# Should DP stop nursing our 6 month old?



## splash (Aug 30, 2005)

We're in a tight spot here...

Charlie is covered head to toe with an oozing, occasionally bleeding, rash. It's been there almost since birth (definitely was there before we left the hospital, just not as severe) He itches, he burns, he's in pain. We've been to 14 dermatologists and 2 allergists and no one can figure out what is wrong. Jean has eliminated all high allergens from her diet and the rash persists. He was on about 4 oz a day of enfamil lipil (he won't take his meds with BM) but we switched last week to nutramigen (which I did NOT want him on, because it's mostly corn syrup, but we're giving it a shot) for that.
He's been RAST tested and showed no allergies. He is getting skin pricked on Friday







. We do not use detergents, he is not vaccinated.
Okay, you don't need the whole history!

My MIL is really pressuring Jean to switch him to formula and see if it helps. Well that would be fine if it were something like switching laundry detergents... that we could go back if it didn't work. But if she stops, it's over. She can't go back.

Charlie is just miserable. We can't think of anything it is and none of his doctors thinks it's an allergic response, and antihistamines make no difference.

We don't want our child in pain. If it were just a rash that didn't bother him, she would continue to nurse him even if it WAS her milk. The spots don't bother us. The pain and itching does, and definitely bothers him. If it IS her milk, I really think he is probably better off on formula than being BF, and that breaks our heart (and his I am sure). Since we don't know WHAT it is, we cannot eliminate it (if it is an allergy).

I don't know if I am looking for advice or not...









How often would she have to pump to keep up her supply? And if it IS an allergy, how long without BM before he starts to improve? I guess she could pump and he could have formula for a week or so to see if it helps... but it would be a nightmare since he nurses all night long...

I just don't know what we should do.


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## Marlet (Sep 9, 2004)

Hugs to you mama! I don't know what to tell you. I looked through Charlie's pictures (man he's cute!) and noticed it comes and goes. That makes me think it's not her milk especially if she's eliminated things. I put bleeding rash into google to see what came up. I don't know if you have considered it or not but the link talks about hemmoragic rash from meningococcal disease. Here is the link so you can look around on it a bit. I hope he gets better soon and there is no need to wean!


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## laohaire (Nov 2, 2005)

Wow, what a tough situation. All the best to you two.

Your DP would have to pump as often as he currently nurses to keep up the supply... and might want to overestimate rather than underestimate.

You *might* be able to give it a decent try after all. If Charlie is 6 months than perhaps after 7-10 days if he doesn't improve he would still remember how to nurse? I would think so, and hope so.

I am not an expert but I would say 7-10 days to give it a good try and let allergens get out of his system if it is indeed BM or something in it that he is allergic to. Best of luck.


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## Slabobbin (Jan 29, 2004)

I have no idea what the problem could be but I wanted to offer support, that must be so hard.


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## Bleu (Mar 6, 2004)

Jeebus, that's a bad rash. But a cute kid. A *very* cute baby! I have no idea how to proceed, but I'm sure someone here will have some ideas. Let's just keep bumping this up until someone -- either an experienced LC, peer counselor or mama who's BTDT -- emerges.

Meanwhile, have you considered rubbing expressed milk on his rash? I wonder if the healing topical effect would still take place if the breastmilk was causing the skin problem?

I would feel the same way, fwiw -- extremely reluctant to wean or even take a chance on unintentional weaning, willing to ignore the rash if it was only cosmetic. I'm searching to see if I can come up with any ideas. Good luck.

ETA: one more thought: OP, I bet you might get more/better response if you listed exactly what your partner has eliminated form her diet -- or, if it's that restricted, what's left/what she is consuming. Not that I know, unfortunately, but someone else might.


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## momma2finn (Sep 25, 2005)

couldn't read and not offer support


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## bluets (Mar 15, 2005)

My husband has skin problems, and my ds has a mild face rash that comes and goes.

My husband uses nasty stuff from the dermatologist.

On ds, I find good results after spraying breastmilk on him in the tub. I follow up with lanolin. I also found a nice lotion from saffronrouge.com - Viola lotion. It's supposed to be for sensitive skin (eczema, specifically). It seems to keep ds's rash under control.

One thought... is dp getting enough dietary vitamin C? I've been reading a lot about vitamin C and skin disorders in infants. It turns out that increased vitamin C in momma's diet can help with atopic responses in babes. It has to be dietary, not supplements, but she might consider increasing (or examining) that part of her diet.

Keep us posted!


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## johub (Feb 19, 2005)

This may be way way way off base, but a dear friend of mine's baby developed a rash a few days after birth that completely covered her body and was crusty and spotty.
My friend brought him to the pediatrician several times with no avail, once she was prescribed antibiotics, no help. She finally got a referral to a dermatologist who took a sample and did a culture and it turned out to be a yeast infection and not an allergy at all.
This went on a long time but my friend was doggedly determined.
Perhaps the allergy is barking up the wrong tree. Perhaps there is an infective agent such as yeast or staph which needs to be cultured and treated. ( of course in 6 months they probably did that already, but since you didnt mention it I figured it wouldnt hurt to suggest it jik)
I am so sorry for your baby's discomfort.
As for stopping nursing, if you have ruled out all possibilities of infection and your dp has already done a full elimination diet it could be worth a try.
But keep in mind how many ingredients formula has, it is possible that if it is even an allergy he is going to be just as sensitive to the formula as the breastmilk.(if not more)
Good luck, and my wishes for a solution.
Joline


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## Tofu the Geek (Dec 2, 2003)

It sounds like you covered your resources as far as allopathic medicine goes. Before considering weaning I would head Charlie and DP over to a naturopathic physician and to a homepath. The naturopathic physician can give you some good ideas for dietary changes and additions to DP's diet and ideas for proper supplementation if necessary. The homeopath can come up with the correct remedy and it won't harm Charlie in anyway. Resorting to formula would be the absolute very last option I would try and I believe you still have many options before you get to that point.

I wish you the best of luck and hope that Charlie gets better soon. He has beautiful eyes, seriously, gorgeous little boy!


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## UmmBnB (Mar 28, 2005)

If you do decide to give the nursing a break and move over to formula for a bit, I'd suggest she pump every 2 hours, round the clock. I have two friends who have exclusively pumped for different reasons and this is what they both found they needed to do to keep their supply up and provide enough to keep their babies exclusively on emm, recognizing that your goal will be to keep her supply up in case the rash doesn't clear.

Hugs to you mamas!!


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## Mackenzie (Sep 26, 2004)

to you all. I hope someone can offer ideas other than the cessation of nursing. I do empathize with the any port in a storm thoughts though.


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## Ruthla (Jun 2, 2004)

I doubt switching him to formula is the answer. It's possible that he's allergic to one of the few foods your DP hasn't removed from her diet (or something in the formula,) or that it's something other than an allergy. I agree with the PP about seeing an "alternative" medical provider, such as a chiropractor, naturopath, or homeopath. It's also possible that whatever meds he's taking is actually making it worse.


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## thepeach80 (Mar 16, 2004)

I would have DP do the total elimination diet pronto, not all allergies in babies are just part of the top 8. Evan reacts to simple things like potatos and turkey, very low on the allergen scale. I did the TED from 11-12 mos and then weaned him to Neocate. If you do give formula, and aren't certain it's not milk, I would move to Neocate as it's milk free, Nutramigen is not and Evan is one of the 10% that can't tolerate it. Does she know all the names for dairy and soy to know what to avoid? The TED isn't fun, but if you guys do it together and know it's for your baby, it'll definitely be worth it. It helped Evan a lot, but I just couldn't keep it up after a year of heck.







It's not too unusual for babies to react to the base foods on the TED so it's not an instant fix for some moms, but hopefully iit'll point you in the right direction.


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## JamesMama (Jun 1, 2005)

I'm so sorry you're dealing with this mama, but your ds is adorable!

I agree with the pp's, try an alternative dr, see how that goes.


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## Tofu the Geek (Dec 2, 2003)

This might be a dumb question, but do you have ANY pets? Was he tested for allergies other than foods? (i.e. anything environmental?)

Also, to add to my post about going to see an alternative practitioner, anything you try on your own is a guessing game right now. At least an alternative practitioner can set you in an educated direction which means you might come to the right solution faster than you would on your own.

In the meantime, the vitamin C added to DP's diet was a good suggestion by a previous poster as well as adding EFA's to her diet (I use Udo's Oil which I think goes by Udo's 3-6-9 Blend now). To see faster results from either of these, you often have to go WAY above the daily recommended allowance which is where a naturopathic physician (or the like) can ensure a breastfeeding mom has a safe amount for the baby.


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## dukeswalker (Feb 1, 2003)

OMG OMG OMG OMG - I know my fingers will not be able to type as fast as my mind is going - You have my baby! Well.. not MY baby - but one that looks just like her!!!
My dd#2 had a HORRIBLE rash! It came on sort of suddenly and would move around her little body - at one point there wasn't an area less than 1/2 an inch square that did not have sort of crusty, oozy, bump/pustule on her. It was soo sad to look at - When I saw your pics I called my dh into the room and said what does this look like to you - his answer? "Abby" - the parts on his face looked just like hers - but for her it was on top of her head her poor hair would get all matted down in scabs and gunk. Your lil' guys legs looked JUST LIKE HERS - even the small roundish patches.......We went to EVERY dermatologist around - even the *good* one - he told us we had bugs...








: Asked us where we got her crib - I replied "there is no crib - her "crib" is our bed" - he then followed it up with - well maybe it's the carpet she is playing on







: I let him know she is a BABY and I HOLD her 99% of the time (the other 1% my dh holds her!) grrr....We eneded up buying a new bed, a new car seat (even though the one she had WAS new, cleaned the carpets 2 times, dipped the poor dog multiple times- triple rinsed everything, washed her more frequently, washed her less frequently, bought special soap, used NO soap, lotions, oils, oatmeal baths, no baths, cloth diapers, regualr diapers, special detergents - we MOVED - WE DID FLIPPIN" EVERYHTHING!!!! There was no rhym or reason to it. And because hers came on suddenly with no introduction of new foods into either of our diets we didn't really feel like it was coming from there. They even did a biopsy on one of her areas - it came up high for eosiniphils (I totally clobbered that word - sorry) which basically meant it was full of allergens -

Fast forward 3 years - her skin is till itchy and bumpy - she has never had that "soft baby skin" - we have to pretty much slather on some thick, almost petroleum jelly stuff or she will keep herself up at night scratching her body away....The only time she ever had *good* skin was when we went to NH for 2 weeks - I think the humidity did it for her...but really, who knows???

For me, I NEVER would have stopped nursing her - it was the ONE thing that gave her comfort when her poor little body was so darn scratchy...And I can't imagine- that something sooo perfect could be the cause of something so painful for my child - it just doesn't make sense in the scheme of all things -


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## dove (Jun 13, 2005)

No time to read all of the replies, but I had to respond!

You have one seriously A-_dorable_ baby on your hands!!!

About the rash - some thoughts and questions:
1) exactly what is dp eating? what kind of diet are we talking here? Eliminating just "high allergens" may not be enough.
2) how long has the diet been in place? It can take weeks, like 2-3 sometimes to make a diff. (I can personally say this)
3) have the derms done _skin cultures_?
4) has any one of them suggested the idea of psoriasis? (if so, I have ideas)
5) or a viral illness that was transmitted in while in utero?
6) what blood tests have been done on little one? (results please)
7) have you considered a homeopath for some relief till you can get to the bottom of this? A very skilled homeopath may even bring a cure, depending what the root cause is. You need a homeopath that is skilled in taking a history and is into classical homeopathy.
8) is he on any meds? now or before? list please (all meds, topical, oral, otc, you name it)
9) does partner know of anything out of the ordinary that she was exposed to during pregnancy?
10) is there anything unusual or out of the ordinary to be considered? Like, for example, where or how you live or what kind of work you do, etc?
11) what makes it better? worse?
12) has there been any genetic testing done? For inherited skin diseases (ichthyoses, for example)
13) please describe the course of a single lesion from start to finish.

I don't think that you should discontinue breastfeeding until all of these (and more) questions can be answered - depending on what it is, formula could just make it worse and then you would really feel horrible. That is just my 2 cents. I would love to know the answers to these questions - I am a nurse, and of course my job is not to diagnose, but I have a diagnostician's mind and have been known to surprise some docs with the answer when it seemed like one couldn't be found.

hope to hear from you! hang in there...someone will be able to help you and your little sweetie!!!


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## lisa78 (Nov 3, 2004)

i dont know if this has been mentioned, but i would try to eliminate the pets and all pet hairs for a few weeks before concidering weaning.

I have a charlie too, and his skin can get bad, and really flares uo when i visit my mom and her dog. it takes me weeks to get it all better after visiting her.
whatever it is good luck!!!


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## Leatherette (Mar 4, 2003)

My daughter had a rash from 4 months to 20 months. We did all sorts of food allergy finagleing (because everyone told me it must be food allergies), gave her borage and flax seed oil, tried every cream, and it turned out that she was allergic to our cats. She had been tested at 6 months, but results are not reliable with babies. When we tested her at 20 months, she tested positive. It took us a few months to find a home for our cats, but when we did, the rash got much better. It is not totally gone, but she is an atopic person anyway.

Might look into the possibility of dust mites as well......

Best of luck,
L.


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## alegna (Jan 14, 2003)

Poor baby! No, I would not under these circumstances even CONSIDER stopping nursing. What if she stopped, and she dried up, and his rash got worse and worse and she had trouble re-lactating? I WOULD eliminate the formula and any other food for awhile. Perhaps a more detailed elimination diet. Perhaps a weekend in a different climate and see if that helps.








for both of you and the little one.
hope he feels better soon.

-angela


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## PatchyMama (Dec 6, 2002)

i wonder if you have looked at yeast as a culprit ? It looks like a yeast rash to me ... Does DP by any chance have a problem with yeast in the past? I saw a baby with a similar rash once and a very knowledgeable mama diagnosed it as yeast, i should see if i can find her email about it..

eta -

Quote:

Candida comprimises the immune system first by killing off
beneficial bactieria in the gut and then moving into other parts of
the body. Candida is actually a part of our system, but when it
grows out of control (it's yeast)that's when it becomes a problem.
Its a bit of a catch 22... improper diet causes the growth of the
candida in the body system, and then candida causes allergies to the
foods we eat! When let loose in the body, it will attack the muscles
(fibromialga is basically candida on the muscle), sexual organs,
brain, moods, skin, poor memory, you name it.


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## Plummeting (Dec 2, 2004)

I have to point out when glaringly obvious problem that no one else has noticed. You mentioned that your DP had done an elimination diet, but you were still giving your baby formula. Obviously, it does ZERO good for your DP to eliminate dairy if you're going to turn around and give it to your baby in a bottle. I don't mean to sound mean, because you obviously realized that and switched formula. I just wanted to point it out, because with a problem that severe, if it is allergies it's going to take a few weeks to go away even after you remove the allergen. Therefore, I wouldn't completely discount the allergy theory just yet, although that may not be it either.

I definitely would not quit breastfeeding, because that is probably the one thing that comforts your baby. Besides, as others have suggested, there is a good chance it isn't allergies.

Whatever it is, hugs to you! I hope you work it out soon. I'll be thinking about you and your family!


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## mamaverdi (Apr 5, 2005)

No I would not stop breastfeeding. Have you considered psoriasis?
I have a friend with a baby who has psoriasis and your pictures look like her baby with an infection. I will email her and ask her to look at your pics.

Heck, it's kind of woo-woo, but you could try muscle testing to find out what allergies he has. I would seek alternative therapies if you can't find anything else....

ETA: What about latex? Have they cultured/biopsied it? I would look into genetics. And perhaps think of geriatric diseases as well.

Good luck.

www.psoriasis.org


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## splash (Aug 30, 2005)

Okay... so many questions to answer!

Yes, they have ruled out psoriasis. And eczema. And impetigo. He has been cultured twice and biopsied once. He'll be biopsied again at his next derm appt. It LOOKS very fungal, but it isn't. He has been on just about everything...

Beginning history, let's start in the womb!

Jean was really sick starting at about 11 weeks. She was hospitalized twice for an infection of unknown origin. Her fever was very high and they could not break it. At once point she was told if her fever rose any higher she would have to terminate the pregnancy. She was THAT sick. Her fever was 105 or higher, and they tried everything to bring it down. Eventually they did, and Charlie, miraculously, stayed put.
After that the pregnancy was pretty easy. She was cared for by a midwife exclusively, and we planned a homebirth. However, once she went to 43 weeks, the midwife by law had to discharge her. She failed a non stress test and no one would induce her, so she had a c-section and Charlie was born at 11 and a half pounds. His placenta was quite dead.
Jean was GBS positive and when he was born he had a quite obvious infection of some sort. We did not want to put him on abx without solid answers but we did. He received 4 days of high dose IV abx twice a day. His infection still didn't clear, and we were sent home (after lots of bitching!) with the instructions that he MUST see his pediatrician 2x a day (she has extended hours, 7a-7p) for follow up blood work and monitoring. Well, finally, the infection cleared. No one ever knew what it was.
The rash was very mild and came and went until about 2 months of age, when it started cracking, oozing, and bleeding. We stopped using detergents (except on his diapers, which are triple rinsed), washed everything in hot hot water, and used only olive oil to bathe him. The rash just got worse. The pediatrician prescribed Ellidel, which did nothing.
On December 6 he saw the first dermatologist who cultured and biopsied it. He prescribed an anti fungal and 2 topical steroids. The rash got better for about a week, and it returned just as bad, and he was in withdrawal from the drugs. We then saw another dermatologist, who prescribed another steroid that did nothing. Then another, who prescribed yet ANOTHER steroid, as well as a 7 day course of Keflex (abx).
It's been the same with each one... a new doc, a new Dx, a new Rx. He was RAST tested at about 4 months, which came back with nothing but dust mites. Originally the lab tech told us he was allergic to cats which freaked us out (we have three) but then we were told she was reading the results wrong. Not cats. No food allergies either. Wheat, dairy, soy, corn, peanuts, tree nuts, shellfish, fish, eggs, and a handful of fruits and veggies were tested, all negative. We also did muscle testing (which, sorry, I have absolutely no faith in) and the only thing he came up with was carrots. We've seen a homeopathic doc (whom I also have very little faith in) who said it was not an allergy, but a skin disorder. This is the same tag line we've gotten from everyone except my MIL and one of the lactation consultants at the hospital. But there has not been a single doctor, even the allergists, who thought it was allergies. He has also been on Zantac for about six weeks, which has helped a lot with the reflux. It runs out in about a week and we will not be refilling it unless we see a significant increase in the puking and back arching, screaming, not sleeping unless upright (which is why he went on it in the first place and we noticed a big improvement).
Eventually we stopped ALL creams and drugs and went to just aloe or beeswax. It seemed to get better for about a week, then back full force again. We bought allergy covers for our down comforter and our pillows. We started vacuuming almost daily (the house is hardwood, with carpet just in the bedrooms) and spraying the allergen reducer on every soft surface. We started wiping down the pets with distilled water (an old wives tales, but something several people have sworn works). No change. A derm prescribed another round of Keflex, which we refused. If they didn't kill it the first time, whatever 'it' is, it's not gonna work a second time.
We started him on probiotics about 2 weeks ago, no change. He's been on the nutramigen for a little over a week now. We cannot stop the nutramigen because we can't get his medicine into him any other way but with formula.
He is seeing a chiropractor tomorrow and another allergist for skin testing on Friday. He has been off his atarax (which we normally only used at night, 2-3 times a week) since last Friday because it will interefere with the results. He has been miserable, but it is also possibly because he doesn't feel good (Jean finally went to the ER last night since she has been feeling horrible for days... she has a sinus and double ear infections as well as bacterial pneumonia).

That's about all I can think of right now.

And to answer the questions that... someone... posted-

1) exactly what is dp eating? what kind of diet are we talking here? Eliminating just "high allergens" may not be enough.

*She was, for a time period, eating little more than rice and juice. However she phased things out in phases. Went a month with no eggs or milk, nothing happened. Then a month with no wheat, corn, or nut products, nothing happened. She doesn't eat soy or anything that lives under water, so no need to eliminate those.*

2) how long has the diet been in place? It can take weeks, like 2-3 sometimes to make a diff. (I can personally say this) *See above*

3) have the derms done skin cultures? *Yes*

4) has any one of them suggested the idea of psoriasis? (if so, I have ideas) *Ruled out early on*

5) or a viral illness that was transmitted in while in utero? *Ruled that out too, though it was a contender for a time*

6) what blood tests have been done on little one? (results please) *lead, CBC (multiple), RAST, chemistry, complete titers for all vaccine preventable diseases, um.... I don't know the number results, but everything came back normal, excpet chicken pox, which was high.*

7) have you considered a homeopath for some relief till you can get to the bottom of this? A very skilled homeopath may even bring a cure, depending what the root cause is. You need a homeopath that is skilled in taking a history and is into classical homeopathy. *Yeah, done that.*

8) is he on any meds? now or before? list please (all meds, topical, oral, otc, you name it) *He has been on almost everything... several topical steroids, antifungals, Keflex, abx at birth (I don't remember which ones), Zantac, Atarax, homeopathic concoctions, probiotics. He is currently on the probiotics, Zantac, and some hoo doo drainage potion that we'll probably stop giving him since it's not doing anything.*

9) does partner know of anything out of the ordinary that she was exposed to during pregnancy?
*Besides being very sick in the beginning, no. Also, she was GBS+, had her membranes stripped 3 times (we're pretty upset about this, since we only found out after the fact that it is a bad idea to do this with GBS+ women), went to 43 weeks gestation (we know the exact date he was conceived), tried everything under the sun (castor oil, cohosh, goldenseal) to induce labor before having a c/s at 43 weeks.*

10) is there anything unusual or out of the ordinary to be considered? Like, for example, where or how you live or what kind of work you do, etc?
*I don't think so. Our house is old, but we've ruled out lead poisoning. I work in an office and she homeschools for a family and takes him with her 3 days a week (she quit teaching when she got pg, and this opportunity came up, so she took it). We live in FL (tampa bay area). Pollen season didn't bother him. Sun and temp change do not appear to affect it.*

11) what makes it better? worse? *Nothing, on both counts. There is not a single reliable trigger or treatment. He notices it more at night, but I don't know if that is because it actually gets worse, or because being tired is just the straw that breaks the camel's back. It does not visibly worsen. It does get worse when he cries though.*

12) has there been any genetic testing done? For inherited skin diseases (ichthyoses, for example) *Not yet, but we will be in the future...*

13) please describe the course of a single lesion from start to finish. *Light pink flat rash, inflammed rash, pus, oozing, then (sometimes) bleeding, then it cracks, dries up, becomes a light pink flat rash again, and flakes off. Takes about a week from start to finish.*


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## Ruthla (Jun 2, 2004)

He was on a lot of antibiotics early in life. Has yeast overgrowth been ruled out?

What medications is he currently taking? Am I correct in understanding that he only needs formula to help him take the meds, and if he went off all oral meds he'd be able to go to breastmilk only?


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## Tofu the Geek (Dec 2, 2003)

Wow, that poor little boy has been through alot.







The probiotics sound like a REALLY good idea as he's been on so many antibiotics his little immune system must be going at full tilt. Has DP added probiotic, EFA's, vitamin C to her diet? See a naturopath and find out what she should be adding.

You said his titers came back high for chicken pox? Did they tell you what that meant? Could this "skin condition" be from her herpes family? Did they test him for ALL HSV viruses (there are a LOT). They way you describe the cycle of a lesion sounds VERY much like how a herpes lesion acts.

Additionally I know you said he isn't allergic to cats, but do you have someone who could look after your cats for awhile? Someone here said that allergy testing isn't always accurate for babies. I know it doesn't really sound like a cat allergy but this seems to me like something simple that can be tested (assuming you have a place for the cats to stay) without having to fill Charlie's body with more somewhat random drugs.

Hugs to your family. Charlie is lucky to have parents who are trying so hard to make him better.


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## velcromom (Sep 23, 2003)

I too was under the impression that allergy testing was less accurate the younger a child is. I think it may have been our ped that told us this in response to our queries about our ds's allergies. So not only can we not accurately test what is triggering his allergies, but in addition most allergy remedies had no effect whatsoever during the first two years. That didn't convice us that the runny stuffy nose, itchy watery eyes and sneezing weren't allergies though, kwim? Just that he was too immature to dx and tx in the usual way. So when they claim it isn't an allergy... I'd want to know, how accurate is a test for immune response on an individual whose immune system is so immature? Plus, allergic reactions can change over time... what you are not allergic to now can be deadly later or conversely, what triggers a reaction now may not bother a person much at some point in the future... so for the info from one test to be the last word on an allergy doesn't always make the best sense.

Here's some info on the RAST test that explains why our ped told us it wouldn't be very accurate -

"The accuracy of allergy testing is quite variable. Even the same test performed at different times on a person can give different results. A person can react to a substance during testing but never react during normal exposure. A person can also have a negative allergy test and yet still be allergic to the substance. "

Also I wanted to offer that fungal cultures are sometimes difficult to grow and/or interpret. I have had a rash of my own that by all description acts exactly like a fungus, yet drs have been unable to isolate it by culture.

I'd continue nursing until and unless there were a definitive cause traced back to breastmilk, which seems really unlikely after all the investigation you have gone thru. As a pp pointed out, it takes weeks if not longer to get all traces of dairy out of the system, and nursing is the one thing a baby can count on for comfort when they aren't feeling well - it is actually proven to have analgesic effects.

I hope your little Charlie finds some relief soon, I know it is very stressful to see your little one suffering and not know how to help.


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## thepeach80 (Mar 16, 2004)

Evan tested negative to everything (except via patch test), but still can't have any dairy (even Nutramigen), soy (soy goes by many, many names and is found in a LOT of foods), eggs, turkey, potatos (all), squash, peas, raspberries, wheat, and olive oil. It doesn't matter whatformula you use if your dp isn't on an elimination diet. If you do do the total elimination diet, I would move to Neocate formula. Have you ever thought of having an endoscopy done and internal biopsies?

Quote:

For me, I NEVER would have stopped nursing her - it was the ONE thing that gave her comfort when her poor little body was so darn scratchy...And I can't imagine- that something sooo perfect could be the cause of something so painful for my child - it just doesn't make sense in the scheme of all things
If the scheme of things were perfect, which it's not, then I'd agree. However, there are plenty of true medical reasons in which a child should not have bm, that's life. I chose to wean Evan at 12 mos b/c my milk wasn't making him happy. Yes, he was doing better on the total elimination diet, but wasn't 'fixed'. He's now thriving and gaining weight on his new formula and we're hoping to start food trials soon.


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## KatWrangler (Mar 21, 2005)

Have you tried joining the POFAK list on Yahoo (Parent Of Food Allergic Kids)? I found this group to be a great source of information and support when my son was allergic to soy and eggs when he was 6 months old (he has outgrown it).


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## Tofu the Geek (Dec 2, 2003)

Quote:


Originally Posted by *thepeach80*
If the scheme of things were perfect, which it's not, then I'd agree. However, there are plenty of true medical reasons in which a child should not have bm, that's life.

That may very well be true, but at this point the OP doesn't know if it is the breastmilk causing the issue. Until she finds out it is, her baby should continue to be breastfed. If it eventually gets proven that it is the breastmilk, they can then evaluate whether there is something the breastfeeding mom can do, or if they need to switch to another food source.


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## splash (Aug 30, 2005)

We're not ruling out an allergy solely because of the RAST testing. I know they are not that accurate. But it doesn't act like an allergy. Nor does it always look like an allergy. The flat pink rash does, but when it becomes red and raised and pussy, it looks nothing like an allergy. And if it were to the pets, it would be there all the time, presumably with the same intensity all the time. It comes and goes often. This time last week it was only his face that was affected. Now his face is a bit better (just the pink rash now and flaking off, in the end stages of this part) but his back and legs are horrible and bleeding.
This is also the point where I have to mention that my DP is being somewhat childish about this. She was willing to do the elimination, but that's it. She's not willing to add any probiotics or anything else to her diet. I can't change it no matter how selfish I think it is. She does get plenty of vit C though, drinks a lot of OJ.
She talked to her lactation consultant today about renting a hospital pump for a few weeks and giving Charlie formula and pumping. But I don't think we could do it. He would be inconsolable. A possible solution is buying a lact-aid and ME nursing him with formula... it might be something we have to look into.
We've also entertained the (extremely expensive and not at all desirable) option of leaving town for a week, or even just 3 days or so. Get a hotel away from the house and the pets and see what happens. But apart from having to board the dogs (which we've never done) and the expense of renting a hotel room on a tight budget... we don't know if a few days would even be enough, and we just can't afford to both miss work for a long period of time right now. I suppose we could rent a hotel HERE, but what fun would that be?








I guess we just wait and see what the new doc finds out on Friday. If she really thinks it is a food allergy, then we might have to go to formula for a while, if not forever, unless they can pinpoint it.


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## Mindi22 (Jun 28, 2005)

I'm so sorry to hear about everything you are going through. Your son is adorable, and seems so generally happy with a rash that would bring a grown man to his knees!

Some thoughts that I have:

1> I'm really glad that you're going to see a chiropractor. Getting Charlie's nervous system in balance can only help him!

2> Reading through all the posts, it sounds like you've done so much with trying to eliminate things from your partner's diet and from his diet. I'll second what some others have said about it sometimes taking a long time for things to be eliminated from the body, even after they have been eliminated from the diet. As much as you can, be patient and don't reintroduce things too quickly.

3> I can understand your partner's reluctance to do anything else - it sounds like she had a rough time during pregnancy with sickness, and she's been through a lot after your son was born as well. As long as dairy has been ruled out as an allergy, see if she can at least up her intake of yogurt with active cultures. At least it's something!

4> I agree with the poster who mentioned that this sounds a lot like a herpes family infection. Especially with the chicken pox titers coming back high, this seems like something that should be explored further if possible (or if it hasn't already!).

5> I think it's highly highly unlikely that the breastmilk is actually the problem, and given all that I've learned about breastmilk, I think it's likely the best thing that he's getting for nutrition and to help his immune system. So, unless it's really pinpointed as the issue, I wouldn't stop it.

*hugs to all of you*. I hope that you figure out what is going on and your baby feels better soon!

-Mindi


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## kyangel80 (Oct 5, 2005)

Hugs to you and Charlie







I said a prayer for him. I really am so sorry you/he are going through this. I read some of your other posts about the cream and then this one. I looked at the pictures this time and he is sooo sweet







I just wanted to give him a big hug and kiss right through the computer







I am no doctor, but I have great instincts as a mother. I wonder what do Jean's instincts tell her? My momma instincts tell me that this is not a breastfeeding issue. Having said that if I were in your situation I would be desperate to try anything to heal my baby, even if that meant weaning from the breast. Your partner could continue to pump to keep up her supply. I know there are mothers here who do exclusive pumping. Tough situation. I have had thoughts of weaning ds from the breast when he was having gas/explosive poop issues and I felt it was my fault b/c my milk was causing it. Luckily I have MDC and I got through those issues







Just keep searching and make the docks find out what this is. I really don't think it is from breastfeeding. I have been in your situation where I had to really push to find out what was wrong with me or a child. I had a similar situation when I was pregnant with ds. I had an infection on my left thumb that initiated when I was pg with dd2. I had been to doc and derm and the derm cultured it and it came back nothing. Anyway I knew what it was and when I was pgwith ds2 I ended up in ER with phlebitis/xantham. I told the ER doc what I thought it was and he was able to diagnose.







That was over a year after I noticed the rash on my thumb. The ER doc told me to go to a derm and I told him I did that and the derm acted like I had leporasy. Anyway hang in there. Good luck.


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## sadkitty (Jun 24, 2004)

Quote:


Originally Posted by *splash*
A possible solution is buying a lact-aid and ME nursing him with formula... it might be something we have to look into.

I was going to suggest this exact idea; if it comes to the point where this might happen. At least he would still have the comfort.

I guess she couldn't eat yogurt for the probiotics huh? That would involve soy or cow...

Poor Charlie. i am sorry for you all


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## A&A (Apr 5, 2004)

I was also going to suggest that it sounds like a yeast infection/rash.


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## leafwood (Jun 15, 2004)

I was also thinking that applying expressed BM to the rash could help.

I hope that your family finds some relief. I'm sure this must be so difficult for all of you!


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## mykdsmomy (Oct 10, 2004)

I think the yeast thing is a real possiblity.....
The rash looks a lot like excema.....which is just another name for a rash caused by a whole genre of thing...
Has he been tested for any sort of autoimmune issues?? I'm thinking maybe it's his little body fighting itself??
I would think it's also a real possibility that it's a dairy issue.....maybe if your dp could cut out ALL dairy for at least three weeks including milk based formula.....and see how that works out? I"m sorry and I hope you get answers soon....


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## sunnysideup (Jan 9, 2005)

Quote:

On December 6 he saw the first dermatologist who cultured and biopsied it. He prescribed an anti fungal and 2 topical steroids. The rash got better for about a week, and it returned just as bad, and he was in withdrawal from the drugs.
My son had a fungal rash that looked very similar to your son's. The anti-fungal medication took _months_ to start working. The fungus can have such a hold on your system, it can take 3 months of taking anti-fungals to start to see improvement.


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## KA29 (Jan 8, 2006)

Poor baby!







I think it looks like yeast as well...and with as many anti-biotics has he has been on, it wouldn't be shocking. I hope you find answers soon. It's so hard to watch our children hurting. Poor little guy.


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## AutumnMama (Jan 2, 2004)

Just a little side note (and you are probably aware of this already, but..) if it IS a yeast rash then putting breastmilk on it can actually make it *worse*!

Yeast feeds off of sugar and there is a fair amount in breastmilk.

I sure hope you are able to figure this out soon







:


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## johub (Feb 19, 2005)

YOu say they prescribed antifungal creams, but was there ever a systemic antifungal prescribed (is there even a diflucan dose for babies I dont know)
BUt if it is yeast and it is that bad, cream probably wouldnt touch the surface.
The fact that your dp had a cesarean striked me as interesting as my friend whose daughter had a similar rash when she was finally properly diagnosed the doc said "was she a cesarean baby?" because I guess in his practice that type of rash was particular to cesarean babies because they dont get the normal flora exposure of teh birth canal. But my friend's baby was born 100% in the caul, so she also did not get exposed to the vaginal flora.
Keep looking.
Yeast can be extremely difficult to get rid of, so the fact that 2 docs have diagnosed it as yeast but the common treatment failed, doesnt really prove to me that it isnt yeast, but just that the prescribed treatment was just not good enough.

I sincerely hope you solve this for your poor baby.
And best of health to your ill DP.
Joline


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## mamaverdi (Apr 5, 2005)

After reading everything you have done, I would lean toward skin disorder, genetic origin, viral origin, exposure in utero or early neonatal period.

I had a very allergic baby. I think allergies do act like allergies. What you are describing doesn't sound like an allergy. This is what I hear you saying as well.

I would speed up genetics, continue with the skin pricks, and not wean the baby. I would also see immunology and possibly infectious disease.

I warn you, ID runs every test known to mankind. They like tests, but when my son had a mystery fever and nothing else was working, boy they ruled things out left and right, and found the culprit.

I'm assuming you guys are seeing pediatric specialists? At a pediatric facilities?


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## sunnysideup (Jan 9, 2005)

Quote:


Originally Posted by *johub*
YOu say they prescribed antifungal creams, but was there ever a systemic antifungal prescribed (is there even a diflucan dose for babies I dont know)
BUt if it is yeast and it is that bad, cream probably wouldnt touch the surface.

This was true for my son's rash.


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## velcromom (Sep 23, 2003)

Quote:


Originally Posted by *sunnysideup*
This was true for my son's rash.

Also true for my fungal rash. The fungus grows in the deepest layer of the skin and a cream just doesn't penetrate it unless I am willing to *vigorously* exfoliate the area before applying it. Ouch!


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## 2crazykids (Jun 19, 2005)

After reading all this...and I did...I just can't believe that your DP won't even try taking massive amounts of probiotics. I have been having horrible troubles with yeast for several years now and have only begun to see improvement in my life and those I'v breast-fed!!!

Get her to take some pro-biotics, take inulin, eat yogurt (WITH NO SUGAR!!!), stop eating refined sugar altogether. It will take a long time but she's got to keep at it. Consistency is the key in the war against yeast.


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## kaylee18 (Dec 25, 2005)

There was an article in Compleat Mother about a baby with terrible 'eczema' that cleared up completely when salicylates were eliminated from bfing mum's diet. Orange juice is high in salicylates, along with other citrus, aspirin, and I forget what else... I mention this mainly because you said dp drinks lots of OJ (even during the elimination diet?)

Thank you, thank you for not dumping your cats at the first sign of this. I am not saying that pets should be kept in all circumstances, but to get rid of them when there is no evidence that they are even contributing to the baby's symptoms is to rate them no more important than objects, when in fact they are a part of your family.

By the way, since the meds don't seem to be helping, perhaps they could be given up along with the formula? Just a thought...

Hoping you find the answer soon!


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## lilyka (Nov 20, 2001)

I say definitely wage an agressive internal and external yeast battle. change clothes frequently (at least 2-3 times a day) sheets and towels ect after every use. wash everything with tea tree oil or vinigar. use cream or rinse a couple of times a day with a mild tto or vinagar solution. Internally give probiotics and perhaps, if you think you could get it into him (good luck) a tablespoon of apple cider vinigar a day. if there is an antiviral medicine I would push for that too. It looks like yeast to me and from the history there is no reason he wouldn't have yeast. and if you are wrong there is little harm that can come from blasting some yeastie beasties.

I would get rid of the cats for a while an see if it helps. you never know but they are certainly an easy thing to rule out.

have you thought about moving? my dd had respitory issues and immune system issus. we sought Dr. after Dr. , every kind of praticitoner you could imagine, used medicines, herbs, homeopothy, strick diet, everything. what finally worked was moving away from that house. There was just something enviromental. we went on vacation this summer and there was something in that house that caused thinsg to start up again. it was definitely cleaner and no animals had ever been in the house. My BIL built it so we know the whole history of it but we almost ende dup in the ER. with a child who had nothing identifiably wrong with her







but whatever it is it is in some house and not others and the only common link we can identify is carpet.

good luck. poor baby. I cried when I saw his rash. it looks so painful


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## dove (Jun 13, 2005)

Hi, me again - I am the _someone_ who posted all of the questions for you. Wow, I think that the illness of unknown origin that dp had in pregnancy is the key here. My original suspicion when I first viewed the pics of the rash was "herpes virus" of some sort. That her varicella (chix pox) would come back high is not a surprise. This could be the ticket.

I would go to a specialty hospital (think mayo, etc...) and be seen by the *infectious disease doctor*, preferably one that has pedi experience and also one that could co-consult with a pedi dermatologist at the same facility. This REALLY, REALLY sounds like a congenitally acquired infection. Women don't often get really bad systemic infections in pregnancy and have the baby survive. I would suspect that you are lucky that Charlie survived, as you kind of mentioned. So, that he has some sequelae to the disease that dp had would not be shocking.

The other thought is to have some genetic testing done. You said you haven't done it yet - I would do that asap, just to rule that out, too. It could be some strange recessive trait that is causing his skin problem.

I wouldn't stop nursing him, but I wonder why your dp won't do probiotics, etc? It can't hurt, if anything it will help his lesions heal faster.

eta: The infectious disease doc could not only look at ds, but could also help determine what dp had - you would need ALL of her hospitalization records, and ds's too.


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## lilyka (Nov 20, 2001)

I also agree with finding a good hospital center that spcializes in the odd. I second the recomendation of Mayo and perhaps contacting St. Judes since they specialize in children.


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## dove (Jun 13, 2005)

lilyka - that is a funny typo!!!


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## NoraB (Dec 10, 2002)

I'm so sorry you're going through this. How awful for all of you. HUGS

I don't have much to offer, but maybe Coconut Oil could help a little. I've been reading Bruce Fife's The Coconut Oil Miracle and am giving it a try myself. Apparently, CO is very, very high in natural antifungals, antivirals, and antibacterials. The free fatty acids that are antimicrobial are activated when the oil is digested and a mom who eats CO will make more of these antimicrobial FAs in her milk. The book even suggested that topical use might be helpful b/c the natural flora on the skin could digest the CO and release the FAs.

I hope you find a solution soon. Keep us posted.


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## johub (Feb 19, 2005)

If your dp isnt interested in taking pro-biotics, you can give them directly to your ds.
THey have pediatric liquid probiotics that you can give to him directly.


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## flapjack (Mar 15, 2005)

This sounds a lot like Isaac: I'm trying to send you a picture of his bad days, but I'm NAK and can't go find and scan one. Basically, he went from dry skin to extremely dry skin which cracked and weeped at 8 weeks, resulting in an infection and hospitalisation. At one point we thought we were going to lose him (but, bless him, he's a fighter.) This continued on and off for a few years- it did get better with age. He definitely does have eczema, unlike your little lad, but there was an underlying viral infection as well, which wasn't diagnosed until 3: the virus was responsible for the unusual and atypical course of his eczema. It does sound very, very similar.
1) Do NOT under any circumstances take him off breastmilk unless there is a clear diagnosis of a lactase deficiency or another really good medical reason. A child with a chronic health condition needs the protection of breastmilk more than most. I would seriously, seriously consider giving his medication via an SMS or expressed breastmilk and get the formula out of his diet.
This is important: you know that there's a possibility he suffers from allergies. Breastmilk may not be protecting him from his current problems, but could minimise the likelihood of asthma later on. Plus, you don't know how much worse his skin is going to get if he doesn't have the immunological benefits of breastmilk.
What we did: strict elimination diet. I know you've already done this, but I'd consider trying it again but for a full 6 week period. I month isn't long enough: a skin regeneration cycle is 28 days, plus you need to allow time before that for the last of the milk/whatever proteins to leave your dp's breastmilk.
Emollients: like you, we went all natural. There is such a thing as a "healing crisis" where it got worse before it got better, but I found that using vegetable oils helped his skin cope with the damage.
Evening Primrose Oil supplements, also probiotics
(You will think I'm nuts, but bear with me.) Melatonin is one of the brain chemicals which has an influence on skin condition, and is secreted by the pineal gland. One of the conditions that the pineal gland needs in order for optimum functioning is darkness, and low levels of nocturnal light. Because Isaac's skin became significantly worse during the full moon, he responded very well to sleeping in a completely blacked-out room (thick blinds, closed windows): given that your ds developed problems before he was even out of hospital, this could be a contributing factor and an experiment worth trying.
I hope some of this helps- he is a gorgeous little boy, and has this fantastic twinkle in his eye


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## Pandora114 (Apr 21, 2005)

My 2cents

Sounds like Shingles...seriously...especially with the Chickenpox thing coming back high, it honestly sounds like Shingles!


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## MAMom (Mar 24, 2005)

Quote:


Originally Posted by *johub*
If your dp isnt interested in taking pro-biotics, you can give them directly to your ds.
THey have pediatric liquid probiotics that you can give to him directly.

Yes, I was going to suggest this too. We gave DS probiotics directly from about 4 months on. Just put the powder on your finger & let him suck it off.

I know you're thinking it's not an allergy, but *just in case* I would be very careful about using dairy-based probiotics. MOST probiotics are cultured on dairy, and my dairy-allergic son did react to them. Even Culturelle, which claims to be "dairy-free" on its package has a disclaimer on their website about containing trace amounts.

Kirkman Lab used to have dairy-free probiotics (cultured on garbanzo bean I believe) but definitely check with the company first.

Estelle, I sent you a private e-mail as well.....


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## lactationmom (Aug 13, 2002)

Too many posts to read through...

the suggestion for shingles is VERY interesting and worth seriously looking into. Also starting Probiotics (which are SO good for all of us).

Try Rescue Remedy also during your search for what is going on, it's found at your local health food store/Earthfare/Wild Oats etc.

Keep us posted!


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## dove (Jun 13, 2005)

I just had a thought - I know you say that you live in FL, but by any chance before dp got sick did you guys go to a desert area? I am thinking Arizona, Claifornia, New Mexico? Coccidiomycosis is what I am thinking. It fits the picture of her initial illness, and now her "pneumonia", and I'm not sure what it does to a baby in utero, but I know that cocci can cause horrific skin lesions.
?????


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## mwherbs (Oct 24, 2004)

my questions-- what brand of probiotics? there are kinds that work better than others-- there is also straight up MD care providers who have studied particular strains of lactobacillus and may be reachable for consult--in looking over the info this kido has had alot of antibiotic exposure- this has been associated with ectopic dermatitis- abx prenatally and during infancy has been associated with - ectopic dermatitis and asthma later--- interestingly other studies have shown a protective/preventive effect in giving certain strains of probiotics- thing these studies have 5yr follow-up. no matter the cause I would probably keep up the probiotics because it can end up helping reduce the overall histamine- no matter what the cause.

one pattern I saw on the picture that may be incidental is on the legs - where socks might reach-- sox would have elastic= latex- carpet pads can often have latex, if the baby has contact with bras or bed protectors that have latex it could account for some of what is going on-- I know just another thing to consider-- and in the mean time you are going crazy trying to figure it out.
my youngest son had a raw bottom and cried all the time- I changed how i washed diapers I changed to disposibles- I changed how I washed him off- I looked at my diet and the only thing I ate any more often than every 4 days( I was on a rotation diet because of allergies) was some form of wheat and B vitamins-- well I quit both and he cleared up-- 2 months later I got an incidental amount of wheat and got sick myself and while sick got about one bite and it continued to make me sick( I only figured this out in retrospect) well a month later after being very very ill had tons of tests that all came up negative-- I presumed I had gluten intolerance- and DS had it too and if I get gluten(which isn't a true allergy- different antibodies) sometimes I am ok but more often I get sick occasionally very sick-- DS even at 17 still cannot eat it- the "gold"standard in testing is to have a small intestine biopsy- no thanks avoidance has worked for me. Any how sensitivity and intolerance are different than allergy but still can be reactions.
also there is some error in RAST testing- typical allergist testing tests for quick reaction which is IgE there is another form of RAST testing which is IgG and this is more delayed reactions this test is not the common test and you usually have to find someone who is savvy enough to run one-
the other thing about IgE rast testing is you can have an allergy and it give a negative result if it shows positive it is most likely accurate- so a negative result doesn't rule out an allergin a positive result confirms one--
common environmental allergins- mold is the top one- animal dander/mite waste is also right up there I would suspect cats and dogs,birds/feathers, latex, talcum powder, these are just some ideas--
I have a big extended family most have allergies so have evolved a bunch of ways to cope or investigate what is going on.
pm me if you have more questions or ideas you want to kick around
take care S


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## MomInCalifornia (Jul 17, 2003)

I almost feel stupid posting such a simple thought, but since you mentioned you use cloth diapers I thought I would post this just in case.

My daughter gets an aweful rash that looks alot like your sons when anything that has been near baking soda touches her skin. I used it a few times on her diapers (even with a double or triple wash) and she still breaks out.

I had one other thought...you say he will only take his meds with the formula. Can your DP pump and you could offer the meds with expressed milk instead?

I'm so sorry you are having such a difficult time with this. Love to your sweet baby!


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## mwherbs (Oct 24, 2004)

just re-read over the posts and saw or noticed something I hadn't seen before
so if you were to go away from home and stay somewhere without feathers- or animal dander is there a change?
an allergy cover over a feather or down pillow works for about 15 minutes for me then I still get hives and sneezing--


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## splash (Aug 30, 2005)

Thanks guys for all the suggestions!
He saw the allergist on Friday. What a NIGHTMARE. See my blog for details because I do not have the emotional fortitude to do it again.
What we're doing now-
I'm ditching the feather comforter today. We have another blanket in the shed I jsut need to go get and wash. Might help, might not, oh well.
We've chucked the latex nipples. Silicone only. He is NOT happy about this. He way prefers latex nipples. But I want to try to eliminate latex and see if it helps.
He is also on acyclovir (topical and systemic) for herpes. 3 times a day for a week for both. We'll see if it helps at all.
The infectious disease doc who saw Jean in the hospital (she's home now thankfully) did say that it could possibly be shingles. It doesn't present exactly like shingles, but it's worth a try with the acyclovir.
Is he supposed to get an adult dose of the probiotics? I use capsules, and just break the capsules open and put it in a bottle of water or milk and give it to him about 2-3 times a day, with a capsule lasting about 2 days. Adult dose is one per day. I give him the bacteria and the food (which kinda squicks me out... 'here little beasties. I will not only let you take up residence inside my baby, I will feed and nurture you as well!') but it doesn't seem to do anything!
Her supply is WAY down now from being so sick and being in the hospital for three days. She's pumping (we rented a hospital pump) or nursing every 2 hours or so. The LC told her to give it a week and if it wasn't back by then, to come see them. So he's gotten more bottles than normal lately. Mostly BM though, since I gave him formula while she was in hospital so everything she pumped we still had.
I'll let everyone know if the acyclovir does the trick!


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## sofysmommy (Feb 15, 2005)

Hi I just tried to read your blog, but could not. I am so angry about the way you were treated at that Dr.'s office







So angry I just want to scream!!!!
My heart goes out to you. I know my post sounds stupid , it is hard for me to express myself well through writing especially since Spanish is my language of origin. But I just wanted to tell you that I hope you will be able to find out what is causing sweet Charlie's ailment








sara


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## Tinas3muskateers (May 19, 2004)

After reading this I had to respond. First I must say he is so damn cute its painful! Secondly I am totally shocked at how you were treated by that "doctor" (i use that term losely with this loser) I hope he gets better soon as well as your dp.


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## Mindi22 (Jun 28, 2005)

OMG - Your poor baby! And poor you!







: I'm sorry you had to go through that asshole. He sounds like a total looser with no bedside manner whatsoever!







Yucky him!

I'm glad that he's now on the acyclovar, I'd love to hear how that goes. And did you see the chiropractor yet? I'm dying to hear how that goes as well!

I hope your DP is home soon and feeling better soon.









=Mindi


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## velcromom (Sep 23, 2003)

Wow, that allergist was a total asshat. Good for you though for standing up to him the way you did - I would have been crying at the first insult for sure. Maybe once you three have less going on to deal with it would be worth filing a complaint with his superiors, the way he treated you was deplorable.

hope the new Rx brings your little one some relief & you all can be at home together soon too!


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## Ruthla (Jun 2, 2004)

Poor baby. I can't beleive what that "doctor" said to you!


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## lactationmom (Aug 13, 2002)

I want you to REALLY hear what I am saying here.

You need to write a well-written, count by count letter to the AMA, his medical board (I forget what the abbreviations are) and his office. Make sure you make copies. You can sue over this behavior. I would never rec. suing a doctor because they too are human, but HIS behavior was very discriminating. You have every right to get his license removed over how your baby and you, were treated. Seriously, this guy is practicing with a huge chip and dispensing harmful and incorrect medical advice (circ this baby now, stop breastfeeding it's no good after 6 months, etc). Do something. Save another, weaker mother this kind of treatment. Do it for your son. Do it sooner rather than later because it won't be fresh in your mind. Write everything down (well, your blog says it all) so you don't forget. Write the facts and this guy is going to have a serious problem explaining his words and behavior to the medical board. Guys like him bring ALL good doctors down, the AMA does not want people like him practicing.

Make sure you praise the nurse, something good needs to be mentioned.


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## coopnwhitsmommy (Jan 13, 2005)

I don't know if anyone has mentioned this yet haven't made it past the first page 

I looked at his pictures...the rash looks like Psoriosis to me. My Mom has it, it comes and goes in patches. It's rough flaky, itchy, and sometimes bleeds.

She uses Steroid cream on it when it flares up.


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## stafl (Jul 1, 2002)

too much to respond to everything I wanted to..... But, if the probiotics dose is one capsule/day, I'd try three, even for a baby. I'd try several different brands, too, and make sure they are kept refrigerated, and I'd take them at least two or three times a day. If they get too warm, even in transport to the store, or waiting to be put on the shelf, they will not be as effective. You cannot take too much of them.

If anyone in the household has any problem with candida, yeast is a very real possibility. If anyone ever has problems with vaginal yeast infections, athlete's foot, thrush, dandruff, or has been on antibiotics reguarly..... I would seriously do everything in my power to eliminate yeast as a possibility. That means no dairy, sugar, or wheat in baby's or mama's diet. That means drinking lots and lots and lots of water and taking at least twice the recommended dosage of probiotics. I'd also suggest that mom max out on grapefruit seed extract, both internally, and externally for baby, in a very dilute solution with plain water. Prescriptions won't work against a resistant strain of yeast, and most yeast is now resistant because of over-prescription of the usual medications. Search the breastfeeding forums for "thrush" and you should find tons of helpful information.

About elimination diets... if a person is allergic to rice (my oldest child is) the regular elimination diet won't do diddly. And I want to echo those posters who have said you need to give it more time to know if elimination diet is working. it usually takes me between 4-6 weeks to completely get certain allergens out of my body, and then you have to give baby's body time to adjust to the changes as well. But my first thought is that this is either yeast or an auto-immune problem. (((((hugs))))) I really hope you get some answers and good results soon.


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## bri276 (Mar 24, 2005)

the fact that chix pox titers came back high should NOT be ignored, it is a very interesting clue. it seems likely this is a herpes-ish thing. as far as allergies, I think you're right, it doesn't act like it.
please encourage her to continue pumping and nursing and eat oatmeal to help the supply come back up (after 6 months EP'ing I can tell you a fluctuation does not necessarily mean a permanent loss!)
you may have answered this but what medication is he taking in the formula? if it's not working, why keep it up? I only ask because at this point it seems you could give him a hundred meds to try to cure everything it could be or you could wait and do nothing until you prove what it really is. I know he's in pain- but switching to formula is opening a whole other Pandora's box. and that bottle of formula can hurt the supply even more, pumping just doesn't cut it for some ppl. I know it's hard to not do SOMETHING just to see if it helps but that chicken pox test is a humongous clue.


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## veganf (Dec 12, 2005)

I'm so sorry your family is going through this. I've read your other posts, so I know the derms "ruled out" psoriasis and eczema, I'm just wondering how they ruled it out. It looks just like the rash my first son developed at a few months old. I did an elimination diet too (I'm already vegan, so I did wheat, gluten, citrus, nightshade family, nuts), but it changed nothing. The Elidel just maded the rash get infected (a side-effect mentioned in the package insert, though not common), and then we tried ProTopic, which worked amazingly. I wish I hadn't had to resort to steroid cream to treat it (recent studies have shown both these ointments to be cancer-causing in laboratory studies), but he too was miserable. He slept next to me with mittens on and I had to hold his hands down all night long to keep him from scratching and just nurse him all night. But luckily we were able to solve the problem within a few months (don't know the cause, except that my husband's side of the family seems to have problems with eczema, and none of them have been so quickly fixed before, so we consider ourselves VERY lucky, but maybe it's our diet and breastfeeding that helped, I hope.)
I can't imagine how frustrated you must feel not being able to get definitive answers and having no way to help your son.









- Krista
mother to Ryan (3, self-weaned in Nov.), A.J. (2, still nursing), both born at home, and babe #3 (due Aug. '06)!


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## lilyka (Nov 20, 2001)

Someone else emight be able to give you specific dosing for probiotics but that is one of those things where the suggestion on the bottle isn't really enough to fight anything. when I am fighting yeast I take 9-12 a day. I would say at least 3 for a baby (although slowly work up to that).


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## beanma (Jan 6, 2002)

wow. just read all this and your blog. poor charlie! poor jean! poor you!

hope jean is feeling better and got to see some nice drs and nurses. the allergist you saw with charlie -- geez whatta piece of work. so sorry you had to deal with that.

the mystery illness that jean had while pg -- does anybody thinnk that could have been chickenpox? i know it's bad when you get it as an adult. i had shingles in my 20s and while it was annoying for me it wasn't too bad. it did not look like charlie, though.

the yeast theory intrigues me. i know when bfeeding moms get thrush sometimes they have to take a 2-4 week course of diflucan instead of the one time shot you might take for a vaginal yeast infection. if charlie's rash is from systemic yeast i can well imagine that a little nystatin wouldn't do much.

hope the acyclovir does the trick, though and am glad you have a supportive ped.

take care of you and your family!


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## rozzie'sma (Jul 6, 2005)

Oh He is sooooooooo cute.

Please don't wean him. It gives him comfort if nothing else, and since you aren't willing to give away the pets unless they are pinpointed as the cause I know you won't give away his mama milk unless it is pinpointed.

Third, that "doc" is a butt brain. I am so sorry you were treated like that. I am kind of glad he did not do the prick test because I could see a person like that putting your child through unnessecary pain just because he was in a bad mood.

Please keep us posted and take care.


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## Jen123 (Mar 16, 2004)

I have read the OP and not the responses...it looks like psoriasis (sp?)...probiotics would clear it up.

I would NOT stop nursing. I would actually encourage your parnter to nurse more.

You could also apply breastmilk directly to the rash. Breastmilk is amazing. When my dd had severe cradle cap I applied breastmilk directly to her scalp and rubbed it in. It was clear with in days. It also helped clear up my eczema.

I'm not trying to comapre the baby's awful rash with cradle cap and mild eczema...but rather wanted to give more info on the healing powers of breastmilk.

I really feel that formula would make it worse.

another thought:
The mama doing the nursing might have something in her diet that is aggrivating the rash. She may want to do an elimination diet...and definitley start taking some acidophilus.....find one with eight strains in it and buy it refrigerated and KEEP it refrigerated...

I'd also up the vitamin C and start taking an essential fatty acid like cod liver oil or flax seed oil.

Hugs and kisses to that sweet baby. And to the parents also.... that's rough having sick baby and not knowing what to do.








s:
ps
I'd stay far away from steriods or steriod creams...too many scary side effects.


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## splash (Aug 30, 2005)

Okay, I decided I will give him more probiotics and Jean will take them as long as I badger her about it.
She has been on 500 mg zithromax and 50 mg rocephin 2x a day for W, Th, F and is now on 500 zitromax and 400 augmentin 2x a day. We're trying to keep her OFF of avalox and vantin which she cannot nurse on, but we may have to use those. If the zithromax doesn't keep the infection down, Charlie WILL have to be a bottle baby for at least a week.
Charlie also started 125 mg Keflex 2x a day today. I did NOT want him on abx, especially with all the abx Jean is on... but there was no way avoiding it. These abx were prescribed weeks ago, and we never filled the rx because we were trying to avoid ANOTHER round of abx (so much for keeping him abx free for the first year...) but his skin is too infected. As bad as abx are for him, it's not worth letting the infection completely take over. I hate hate hate that he is on these meds. I just hate it.
So, this is the THIRD TIME in 6 months (if you count birth) that he is on abx. I hate it. But abx do have their place and I know we are not abusing them. We're using them as a last resort. So, ten days of keflex for him. On top of the atarax (antihistamine) and the acyclovir (antiviral). His body is so anti right now! He hasn't gotten Zantac in over a week and he hasn't gotten worse. Yay!
I am so worried about pumping all these drugs into his system... but I HAVE to. If I stop the atarax, he's miserable. If I stop the acyclovir, we'll never know if it's herpes. If I stop the keflex, the infection gets worse. He is also, of course, on topical acyclovir (zovirax cream), and one of the main side effects is increased itching. Great.
We're also probably going to use disposable diapers (except at night) until he's done with the meds. His urine reaks, and he has diarrhea to boot. I can't be washing diapers daily.
He is just totally miserable right now. I feel so bad for him. I don't want to give him MORE drugs but I've been giving him tylenol for the pain so he can sleep at night.
He's really not getting formula much though. He's getting some (1-2 oz a day), because Jean's supply has taken a big hit. But she has nursed him a LOT this weekend, as well as pumping, so hopefully it will get back up. But he LOVES the keflex (watermelon flavored), doesn't mind the atarax (strawberry) and will take the acyclovir with BM or sometimes with water.
He saw the chiropractor on Wednesday and is going back tomorrow. He'll be going twice a week for 2-3 months. Hopefully she can help him.


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## kaylee18 (Dec 25, 2005)

Please please please do as lactationmom suggests and report Dr. Scummypants. But first please get a complete copy of your chart from that office. If you don't, they may modify your chart and thereby reduce the impact of your complaint.

The board of medical examiners needs to hear about this in order to protect other patients from this person. Physicians are not supposed to behave this way.









My own dp has been to many allergists [and we have kept the cats btw]. He says, "No allergist ever asked to see my [intact] penis and if one did, I would be very worried..."








to you and dp.


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## stafl (Jul 1, 2002)

Quote:

His urine reaks, and he has diarrhea to boot.
if he didn't before, he most definitely has candida overgrowth now, especially given all the abx he has taken. There is no good bacteria left inside him.







poor little guy. Your whole family is in my thoughts and prayers


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## thepeach80 (Mar 16, 2004)

OMG, HUGE hugs! We've seen 2 different allergists (a total of 3 times) since Evan was born and we've never been treated like that. Good for you for standing up to him. I know I had to smack the GI's hand away from Evan's penis too. What is up w/ that? Ugh! Anyways, he handled it totally wrong, BUT if Charlie's rash is covering most of his body they can't do the skin test. It has nothing to do w/ age though, it has to do w/ being able to get as accurate of info as possible and on a child who is broken out head to toe, they will probably react more than they normall would. I do hope the acyclovir helps. If it helps, AJ was on it at 4 mos and at 2.5 he's brilliant!







On some days anyways, lol, other days I wonder who abducted my child.


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## Devaskyla (Oct 5, 2003)

No advice, just


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## l_olive (Jan 18, 2005)

I just wanted to say that I've read your story -- both here and on your blog -- and that I think you're a really strong and amazing mama. Hang in there, be your son's best advocate, and you'll find the right way to help him.

One other thing. I've had herpes for 18 years now, and for me, acyclovir only really works if I take it right when an outbreak starts. I feel a prickly sort of tingle before I ever see a lesion. If I wait to take it, it basically does nothing for me. I guess that what I'm saying is that, if it is a herpes virus, you may not notice much change on existing lesions. If it were me, I'd consider using it with him for awhile to see if it eventually lessens the duration and / or frequency he breaks out.

I'll be thinking of your family,

--Olive


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## kcbabe (Jan 11, 2005)

I think one would be able to find out exactly what it is. I took my dd to one when she had an urinary tract infection. The ped didn't want to give her antibiotics to see if it would clear up. Took dd to our ND and he hooked her up to a computer generated machine which measures every bodily function/area by chi energy. He was able to tell us exact cause and prescribed natural and homepathic remedies. DD's uti cleared up on it's own and it was caused by yeast and fungal infections. We've had huge problem with that since birth (almost quit breastfeeding, so painful) and I still battle an infestation in my body of candida. Antibiotics, unfortunately, is a main culprit to yeast/fungal infections. So if your baby has this then antibiotics may be making it worse. Cause when all the bacteria, even good ones, are killed off the strong yeast bacteria comes in and takes over.

You should give your baby some kind of probiotic to help replenish good bacteria. Just read in another post that you're giving already. I used a good quality probiotic, www.culturelle.com that is clinically proven to withstand stomache acid to make it into the intestines. My ND also said it was a good brand. I gave my dd 1 capsule/day mixed in a medicine cup w/breastmilk. I took like 2-3. Don't worry it won't harm your baby.

Sorry that you're going thru this. I had such a tough time, and still do, battling yeast. Hang in there.

Reeran


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## mwherbs (Oct 24, 2004)

Quote:


Originally Posted by *kcbabe*
You should give your baby some kind of probiotic to help replenish good bacteria. Just read in another post that you're giving already. I used a good quality probiotic, www.culturelle.com that is clinically proven to withstand stomache acid to make it into the intestines. My ND also said it was a good brand. I gave my dd 1 capsule/day mixed in a medicine cup w/breastmilk. I took like 2-3. Don't worry it won't harm your baby.
Reeran


This brand of lactobacillus is a good brand but very expensive--a doc at a hospital pattented it and it is the strain of lactobacillus that has been studied to work it produces live colonies even after being capped up-- the forms of lactobacillus rhamnosis (or rhamnosus) it is lactobacillus GG- and guess what it is also in cultured sour dough-- the thing is you could give it with every feeding- there are over 300 known strains of lactobacillus, in all sorts of foods- anything fermented - there is a nice cookbook out there called Nourishing Traditions that has some fermentation recommendations. ---------I have found that self investigation is about the only way to get good and timely treatment -- at the culturelle site there are some studies - there are others at pub med or you can look at google scholar


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## heatherzenzen (Aug 21, 2004)

I don't know if it's allergies or not, but a lot of environmental allergies are NOT detected in allergy test (or contaminant allergies, like pesticides, for that matter). I've struggled with un-diagnosed allergies for about 15 years now (I get hives for "no reason", they're worse in the spring, summer and fall than the winter (a LOT worse), but they're still there in the winter. The only time they truely have disappeered is when I've traveled or lived in different states. I'm in MN, but when I travel/lived in CA, NC, SC, and FL they were virtually non-existent.) I've been on the generic version of Atarax forever it seems, and that doesn't keep them from breaking out, but it does help a bit. Maybe your son has an allergy like that? I've had allergy tests, and nothing ever shows up except a very slight reaction to dust mites.

One thing I'm looking into is NAET or NMT http://www.neuromodulationtechnique.com (which is actually what I'm leaning towards since it seems more efficient). Not covered by insurance, though, so I have to wait for my husband to get a good commission check first. But I REALLY don't want to go through another summer like last summer.

Maybe your son would benefit from such a treatment? Perhaps you could get a consult? It's basically allergy elimination, and I can't believe all the wonderful things I"ve heard. People have been on the brink of death from their allergies, and this cured them. All natural, so no side effects. The only side effect is in the pocketbook, but even then it's not astoundingly expensive, and your practitioner may let you pay a little every month.

Until then, my prayers that you find the cause and cure your son!

Oh, and KEEP UP THE BREASTFEEDING! Stopping will probably just make it worse!


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## pjlioness (Nov 29, 2001)

You and your partner sound like wonderful caring moms, and Charlie is absolutely adorable. He may be miserable with this skin rash, but his eyes show that he knows he is loved.

I hope you have an answer soon, and that you are able to avoid other Dr.'s who have no business practicing medicine - I was shocked at that dermatologist's behavior.


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## Heffernhyphen (May 3, 2005)

Quote:


Originally Posted by *l_olive*
I've had herpes for 18 years now . . .

Olive,

I'm so impressed by you. I don't think I've ever heard (or seen) anyone openly admit to having herpes. I've always wondered why the stigma? Why the shame? There are tee shirts that read: I've had an abortion. But nobody EVER talks about having herpes.







:

Good for you for being unashamed and open about it. If it were up to me, there'd be a national ad campaign with celebrities admitting that they have it and advising others how to avoid it. Maybe then when a little guy like Charlie gets a mystery rash, some of the mystery would be eliminated.


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## Rainbow (Nov 19, 2001)

If I were you I would give up with the different types of Drs and head in to your closest Children's Hospital. Charlie will get a better quality of service and various specialists can conference together and look at it together with a more unified approach. Childrens hospitals also have the cutting edge in research and technology. It really sounds like he needs this... each Dr is throwing at him the best meds they can figure out based on their speciality and area of expertise. I really think he needs a more ''whole'' approach and I think you'll get a better standard of care at a children's hospital.

In combination with that, I read an article recently on acupuncture and skin disorders... and how there have been significant scientific studies to show an improvement. Since you haven't tried it yet, it might be worth a try. I can't find the article, but here is one on the theory behind skin disorders according to chinese medicine. http://www.msingler.com/Frame/skin.html


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## l_olive (Jan 18, 2005)

Quote:


Originally Posted by *Heffernhyphen*
I'm so impressed by you. I don't think I've ever heard (or seen) anyone openly admit to having herpes.

LMAO, I impress somebody and it's cuz of the herpes!









And if I thought it would help this little boy in the slightest, I'd shout it from the rooftops!

--Olive


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## kimbies (Aug 31, 2004)

My baby had eczema for a while. My holistic pediatrician (she is also an MD) recommended 1 tsp of Cod Liver Oil per day. Get a bottle from the health food store- a good brand is Nordic Naturals- find one that is distilled and free of toxins. My baby like the orange flavored one best. Also, give 1 tsp of Flax Oil everyday. Just spoon it into the baby's mouth. You can also rub Flax oil on the body, into the rash. This will help with itching and getting the Omega into his body more quickly. Your partner should also take the same amount of oils everyday so it gets into her breastmilk. Many rashes are signs of too little Omega 3 acids in the body. Either way it will help- even if it's a yeast rash or whatever.
I wouldn't stop breastfeeding- it's way more nutricious than formula- but you could have your partner pump for 2 weeks and just use formula instead, just to see if the rash gets better- then her milk supply won't get low.
You probably shouldn't get any vaccinations until you have this rash under control (your baby's immune system is already compromised for some reason and the rash signals that he is already pushing out poison through the skin). You don't want to compromise it more by introducing all the extra "infections" that vaccines introduce.
Your best bet is to find a true homeopath or naturopath. Any MD will tell you to use drugs. The homeopaths get (or try to get) to the root of the problem. The oils worked for my baby, and he had a nasty eczema. But it took like a month for the rash to go away totally.
Also- stay on the probiotics- your partner should take them too! THey are essential if you baby is on antibiotics.
Also- Aloe vera juice is an immune system stimulant. Get George's Aloe Vera Juice- it has no flavor. I have read about the great things it does for the body. You can get it at the health food store.
If it is a yeast infection- this is very complicated to deal with, and your partner should go on a Candida diet....a homeopath will steer you in the right direction with that!
Coconut Oil for cooking is anti-viral, anti-bacterial, etc. I used this on my baby's cradle cap, and it went away with one treatment. You can also try that on his skin and see if it helps soothe the itching....
GOOD LUCK!!!!


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## mwherbs (Oct 24, 2004)

do you have some general lab work for this kido?
there is a dermatology web site you can look and compare -- I spent a while comparing your pic with the pics they have and there are a few look-alikes
seborrhea
eczema
the zinc deficency disorder one and
some that have to do with immune problems...
contact dermatitis
if you want the web address just let me know it is alot of upsetting pics to page through..


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## agcj (Sep 20, 2005)

I agree. babies with allergies do better with breast milk. The stuff they have for allergic babies is very, very expensive. And this might not even be caused by allergies. The breast milk might actually be making it better. It could be worse if you go to formula. I would get off all the formula. that stuff has so many ingredients that could cause problems.


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## inspiredmommy (Nov 29, 2005)

Hi Hugs to you all,
What a very hard thing for you all. It looks almost like an atopic eczemia, but it is strange that it has been present since birth. If the MDs are thinking it isn't allergic then I would be hesitant to put him on formula versus bm. It has been my experience that babies are generally not "allergic" to mom's milk, but many a baby has had issues with formula intolerance, both in the gut and the skin-I would hate to see a baby that weaned and ended up with a miserable tummy from formula and continues with a wicked rash.Best of luck to you in whatever you decide to do.


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## hoffmas5 (May 5, 2003)

You have So many wonderful responses already, I'm not sure if I should reply.. or if you'll even make it to reading my long story. I'm going to post it anyway in case it helps!

My son had severe eczema from his first few days of life. I tried all the elimination diets, thinking I was doing it right... Finally I tried a total elimination diet, Dr Sears has a nice one - you eat like 5 foods, no seasonings except sea salt, etc. After 2 weeks, my sons problems (and he had alot more than severe eczema) were GONE. So I knew at that point it was certainly a reaction, its the perfect way to rule it one way or the other. Problem was I couldnt figure out exactly what food it was still. At that point we started seeing an allergist. RAST tests are highly inaccurate in infants & small children, dont put alot of weight into those results. Skin-prick was the only thing that ever worked with my 2 allergic kiddos.

Sure enough, after 1 skin test we had our answer. Seemed easy enough, I started eliminating every trace of the food & he got better. 2 months later he developed a new allergy & we had to go thru the testing again. Same thing, skin test found it, I eliminated - he was better for a couple of months. Whole thing started again.... ugh. Throughout this entire ordeal our allergist was pretty adamant that it was time I gave up BF, too many reactions & too many new exposures to food proteins thru my bm. I ignored him, but at 11 months I started to cave... maybe they were right, it was just SO hard. (my son had severe, constant projectile vomiting along with the eczema- so it truly seemed as though I was causing him great harm...) I finally gave in & weaned. He ended up on Neocate (prescription, extremely expensive & no complete proteins in it). Well, wouldnt ya know, he STILL had reactions.

Then we end up in a GI docs office who specializes in food allergic children. The first thing he said to me? "I really wish you had come to see me before you quit breastfeeding, I could have helped you & he would be far better off getting breastmilk than formula" Wow, I cried...

My point in all this is not to let anyone dissuade you from bf'ing. A child with health issues is a child that really NEEDS BM!!

And I second all the other posts... cod liver oil, borage or evening primrose oil for mom, maybe wheat germ for the vitamin E (great for skin healing), and a probiotic supplement would all be very helpful to babe.

It does get better too, my ds is now 3 1/2 and he has outgrown many of his food allergies. Now only has 2 left. He hasnt had an eczema flare since he was 12 months old.

Good luck to you, keep searching & the answers will find you!!

Stephanie

Mom to Paige 6/01 and Aidan 5/02


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## dawnof77 (Feb 6, 2006)

i am so sorry for you. i have been there. i DID put my son on formula for 2 days and it helped (he woke screaming every 15 minutes at night and could not sleep without vibration, colic tablets and a stupid pacifier-didn't have a rash). i was going to go off for a week but i tried to feed him on the third day and he was better. in the meantime, i got a double electric pump (recommended as "the only way to keep my supply" by a lactation consultant) and tincture/tea for boosting supply (fenugreek, mother's milk). i think it's doable. i was really freaked out about possibly losing my supply, but i think it would have been okay. looking back, i wish i would have relaxed. i love my pump but i don't really need it








.
i'll pray for you-hope you don't mind.
lindsay
p.s. i also have a lot of milk-still, often, more than we need. i don't know if that has a bearing on our success.


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## HerthElde (Sep 18, 2003)

I have to agree with those who suggested going to a homeopath - the skin is the vital force's vehicle of toxin elimination which has the least impact on the major organs. If allopathic drugs suppress the problem without the actual cause for weakening of the vital force being addressed, the problem will present in some other way (which allopathic medicine will not link together), likely in a more internal location.
Another option is bodytalk, see http://www.bodytalksystem.com
Good luck to you







, whatever course you take with this.


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