# 8 days old, and we have to give our DD a pill daily. Help us with figure this out, please. We are desperate.



## lellian (Apr 30, 2009)

Our DD's PKU test came back with her thyroid levels being drastically off. We had a second test done to confirm. Both test show that her thyroid isn't working. We were giving a pill and told she needs this once a day. We see a specialist tomorrow at Mass General.

Question: how the heck have you succeeded in giving a newborn a pill? We crush the crap out of it, and have tried putting it in a nipple with some breastmilk. The pill, no matter how crushed it is, just collects in the nipple and she can't suck out the milk or the medicine. We put numerous wholes in the nipple, the pill residue still collect in the tip of the nipple and she can't get it down. We also tried a dropper. We crush the pill, mix it with breastmilk, and put the dropper in her mouth with very tiny drops at a time. This has worked twice but she has now discovered how to not swallow and to push the liquid mixture out of her mouth.

This is a very serious matter. Life altering, and here we are new parents trying to figure out how to best get this medicine into her.

Can anyone help? What aren't we thinking of?!

Please and thank you.


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## jeliphish (Jul 18, 2007)

I'm so sorry...I have been thinking about your baby today. I am soooo glad you did the PKU testing/ metabolic screening. Hopefully this will be a good example about how life saving this test is because sometimes people feel it is not needed.

I would continue to crush it and put it in the dropper with breast milk. You need to put it deep in her cheek and squeeze. I would not squeeze all of it at once, but maybe half and half. I wouldn't lay her back all the way, just elevate her so it's easier to swallow.

How is she nursing?


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## Jane (May 15, 2002)

I'd probably try crushing the pill into dust, then dip my finger in the dust, and place in her mouth occacionally for her to suck off.
Please talk to the specialist about a specially compounded liquid medication. Often a particular type of pharmacist can make pills into liquid. I haven't a clue whether thyroid medication can be made liquid, but it would help.


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## MCatLvrMom2A&X (Nov 18, 2004)

I am sure there is a liquid form available at least I have read about it.

With thyroid issues there isnt a need for formula supplementing that I am aware of since they thyroid has nothing to do with what you ingest.


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## KatWrangler (Mar 21, 2005)

I don't understand, isn't there a liquid form? I can't believe they gave you a pill to give her.







Call the Pharmacist tonight, before they close.


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## ktmeyer (Jan 13, 2010)

Look for a compounding pharmacy in your area, they can make it into a liquid for you, even flavor it.

Katie


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## lellian (Apr 30, 2009)

jeliphish: the PKU testing is beyond valuable, as you know. We are SO grateful this was caught at day 5 of her life, and she was taking medicine of that night. IF not, and we waited until she started showing signs it would have been too late to turn back the clock on her mental development, something that cannot be reverse in regards to living a normal life. I cannot imagine one reason to not have the PKU test. Test results are beyond scary. We are beyond anxious to speak to a specialist tomorrow, and we are beyond thankful, grateful this test exist.

In regards to nursing, I've had a problem with my milk coming in, still. The LC and my midwife put me on raglin (not sure if that is how it is spelled?), and we are supplementing with a friend's breastmilk, and when necessary formula. She is an awesome little nurser. The problem is all on my side. I hope once we have some answers tomorrow about her thyroid, I will relax enough to produce. . .my body is still recovery from labor, and I'm told that I should add iron supplements, so I've done that too. We started using a SNS today to get the supplemental milk into her system.

Apricot & MCatLvrMom2A&X: the pharmacy told us that there is a liquid version. . .not yet approved by the FDA.







Hopefully the endocrinologist will know more about this. . .it has taken us 45-75 minutes to get this one pill into her system.

Does anyone have an opinion about when we should give her the pill? Meaning, we tried last night after she ate, and she spit the breastmilk out. She wanted nothing to do with it. We are new to this, and it is hard not to beat ourselves up for not having this figured out yet. . espically when she is the most precious thing in our world, and we have to get this into her. Talk about stress.























Thank you.


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## ErinsJuneBug (Nov 21, 2006)

Put it in a dropper crushed up with some breastmilk. Squirt it into her mouth on the side in her cheek and blow hard on her face. Blowing will make her hold her breath and swallow. Good luck!


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## KatWrangler (Mar 21, 2005)

Cross post this in Special Needs Parenting.

http://www.mothering.com/discussions...play.php?f=157


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## claddaghmom (May 30, 2008)

My brother has no thyroid. It is available in liquid form...heck and he was a babe almost 20yrs ago...what were they thinking giving you a pill?


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## lellian (Apr 30, 2009)

I don't know what they were thinking giving us a pill except that that was a direct script from the endocrinologist herself. DH asked the pharmacy about liquid version as it is approved in other countries but not here, and when he asked about compounding pharmarcy...he was told that that will destroy the orginal component of the medicine, and she needs to get an exact amount, which can't be tabulated in a liquid form? I'm very confused. We have a list of questions for the endocrinologist tomorrow, but first we have to get through the medicine adventure tonight.


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## KatWrangler (Mar 21, 2005)

Well we are confused too!


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## Veritaserum (Apr 24, 2004)

With your supply issues has anyone checked _your_ thyroid function? My thyroid wasn't working right and my energy and breastmilk supply tanked. I'm glad your dd's condition was caught early and I sure hope there's an alternative to a pill!


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## lellian (Apr 30, 2009)

Veritaserum: good idea. I'm going to call my midwife tomorrow and ask her. I did start all the iron supplements today. Probably a good idea to get my blood checked again now that it has been a week after labor.


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## KCMichigan (Jul 21, 2009)

Quote:


Originally Posted by *ErinsJuneBug* 
Put it in a dropper crushed up with some breastmilk. Squirt it into her mouth on the side in her cheek and blow hard on her face. Blowing will make her hold her breath and swallow. Good luck!











We were given a pill for DDs severe reflux. We mushed it up/mixed with formula and did the above.

Then after about 2 months we got a compounded formula (specialty pharmacy) that was flavored. It went over much better and we paid a higher copay, but we felt she took more of it and it was much much easier to make sure she got what she needed.

For a few month our insurance did not cover her meds since they were not FDA approved for her age. Well, that lasted only 2 months (her DR gave us samples to get us through) and with letters from Dr and contacting our insurance about the meds.

Now that she is older, they have a disolvable tablet- which I think is the best and it is covered by FDA (we could not use it earlier due to her weight too low for the lowest tablet dosage).

Ask the Endocrinologist for samples, donation, contact the company (often they will have free or reduced meds for some patients that can not get them through insurance or afford them).


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## momtoS (Apr 12, 2006)

Could you use a medicine syringe? What condition does your LO have?


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## Kuba'sMama (Oct 8, 2004)

what about a suppository?


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## gillibean (Nov 28, 2006)

Quote:


Originally Posted by *Kuba'sMama* 
what about a suppository?

This is what I was thinking. I really wish suppositories weren't so shunned in North America.


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## mediumcrunch (Dec 10, 2009)

There have got to be online support groups for parents of babies with congenital hypothyroidism. I know my sil had some trouble getting the hang of giving her dd that was hypo her levothyroxine but she had it figured out eventually. PM me if you can't get the info you need and I'll contact her and ask her how she did it.


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## autumnday (Aug 29, 2009)

Quote:


Originally Posted by *lellian* 
and when he asked about compounding pharmarcy...he was told that that will destroy the orginal component of the medicine, and she needs to get an exact amount, which can't be tabulated in a liquid form?

It may be difficult to tabulate it in liquid form, but trying to give a newborn a crushed up tablet is not going to result in her getting the exact amount either, in fact you have no way of knowing how much she is getting. Maybe talk to the endo about trying the compounding pharmacy and retesting to see if the compounded formulation is working. You could also ask the pharmacist at the compounding pharmacy about the uniformity and stability of the active ingredient when compounded, maybe they will have some hopeful information for you.

I hope it gets easier, but glad it was caught early!


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## sbgrace (Sep 22, 2004)

Will it dissolve in breastmilk? We used the cheek pocket technique to get meds in my son when he was an infant. It's described here. http://www.askdrsears.com/html/10/T110206.asp Our meds were liquid but horrible tasting.

He also talks about putting tiny pieces of tablets in the cheek.







I can't imagine why they prescribed a pill for an infant.


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## CallMeMommy (Jun 15, 2005)

Stupid question, but have you called around to other pharmacies? Lots of times pharmacies won't carry every form of the medication but other pharmacies will (like when my son needed to be on amoxicillin right before we were set to head out of town, so I requested the chewables but our pharmacy didn't carry them - their chain in the next town over did, though!







)


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## GoBecGo (May 14, 2008)

Talk to your endo about it. Is he a specific paediatric endocrinologist?

I have Hashi's, and take levothyroxine every day. These are the guidelines for MY meds (which may well be different for a baby, but you need to explore it all i think since i don't know what form you've been given).

It must be taken on an empty stomach (the pill is supposed to get to the small intestine without being "digested" in the stomach for optimum absorption - washing it down with water upon waking and at least 30mins before food is how they advise adults/younger people to do it, but this is obviously not possible with a baby).
It must absolutely not be taken with a vitamin pill, an iron pill or anything with calcium in it (including milk) because it binds with some other minerals and will not get into the blood properly if that happens.
It should not be chewed, powdered or broken unless to adjust dose (25mcgm is the smallest pill readily available for adults, this will not be the case for newborns) - i'm not sure why.

As a person with hypothyroidism who has been on this medication for years i would give it to my newborn as i would a cat - i.e. i would put it far back on the tongue and then squirt a little liquid (of whatever sort was deemed ok - breastmilk or water or whatever) in on top then blow on the face to cause a swallow. I would then soothe and nurse immediately. I know this sounds cruel, and it certainly isn't the kindest way, but if no liquid form was available, knowing what i do (first hand from adult hypothyroidism and in reading about paediatric hypothyroidism) i would regard it as a necessary evil - child diabetics hate their injections, but it's too important to muck about with.

Hopefully your endo will be able to answer all of these questions. I too am a big supporter of the PKU test for this reason. Huge







to you, i know how daunted i felt when I was dx, i can't imagine having to deal with caring for a similarly affected newborn.


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## gardenmommy (Nov 23, 2001)

Hugs Mama! I have no advice for you, but I just wanted to say again that your baby is so fortunate to have such loving and dedicated parents. Definitely take care of yourself, too! You are doing a terrific job of mothering your baby, but don't forget to look after your own needs, they are just as legitimate as your baby's.


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## jeliphish (Jul 18, 2007)

Quote:


Originally Posted by *GoBecGo* 
Talk to your endo about it. Is he a specific paediatric endocrinologist?

I have Hashi's, and take levothyroxine every day. These are the guidelines for MY meds (which may well be different for a baby, but you need to explore it all i think since i don't know what form you've been given).

It must be taken on an empty stomach (the pill is supposed to get to the small intestine without being "digested" in the stomach for optimum absorption - washing it down with water upon waking and at least 30mins before food is how they advise adults/younger people to do it, but this is obviously not possible with a baby).
It must absolutely not be taken with a vitamin pill, an iron pill or anything with calcium in it (including milk) because it binds with some other minerals and will not get into the blood properly if that happens.
It should not be chewed, powdered or broken unless to adjust dose (25mcgm is the smallest pill readily available for adults, this will not be the case for newborns) - i'm not sure why.

As a person with hypothyroidism who has been on this medication for years i would give it to my newborn as i would a cat - i.e. i would put it far back on the tongue and then squirt a little liquid (of whatever sort was deemed ok - breastmilk or water or whatever) in on top then blow on the face to cause a swallow. I would then soothe and nurse immediately. I know this sounds cruel, and it certainly isn't the kindest way, but if no liquid form was available, knowing what i do (first hand from adult hypothyroidism and in reading about paediatric hypothyroidism) i would regard it as a necessary evil - child diabetics hate their injections, but it's too important to muck about with.

Hopefully your endo will be able to answer all of these questions. I too am a big supporter of the PKU test for this reason. Huge







to you, i know how daunted i felt when I was dx, i can't imagine having to deal with caring for a similarly affected newborn.

I too wondered about giving it to her like you would a cat. That was my first thought actually because with crushing it you may potentially lose some of the pill as well as lose some of its effects.


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## AfricanQueen99 (Jun 7, 2008)

My cancerous thyroid was removed a couple of years ago and I've been on Levoxyl since then. GoBecGo mentioned good guidelines, but mine are different:
1. Take first thing in the morning with one glass of water
2. Do not eat or drink anything for one hour
3. Do not take ANY other medication within four hours (in either direction)

Honestly, I would call the Pharmacist and ask the protocol for an infant on your specific brand. That person should have access to a Q&A database (I've seen them access it) to determine how breastmilk might alter the medication. Then find out who can provide a liquid form for you.


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## Contrariety (Jul 16, 2007)

Would something like this work? I've seen them before and it seems like it could work? Maybe?


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## Bea (Apr 6, 2008)

I'd crush it between two dessert spoons and mix it with a teaspoon or so of water and give it that way. Either with a dropper or just straight off the spoon.


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## tessie (Dec 6, 2006)

Did the pharmacist give the ok to crush it? it can be dangerous to crush some types of med as they are absorbed at the wrong rate. Hope all goes well with treatment and they can prescribe something easier for the baby to take.


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## wednesday (Apr 26, 2004)

I think a medicine syringe with a plunger may work better for you than a dropper where you squeeze a bulb. Prevacid for babies comes as a tablet that you dissolve in a little bit of liquid. It disintegrates into little granules. When you pick it up at the pharmacy they give you a prevacid branded syringe that has a tip big enough for the granules to pass through. I'm thinking that's the sort of medicine syringe you need.

The Target and Walgreens pharmacies give out a very similar syringe whenever you pick up a liquid kids' medicine. If you don't have such a syringe already I suggest just going to one of those pharmacies and asking if they can give you one.

I do think tho that you absolutely need guidance from a pediatric endocrinologist on the ideal way to get this into your baby. I don't understand who prescribed this for your baby but they should not have just left you in the dark as to how to give it to her.

Good luck -- it sounds like you are trying very hard to take care of your precious girl.


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## mwherbs (Oct 24, 2004)

info from a metabolic screening site about hypothyroid-

"Only the tablet form of levo-thyroxine should be prescribed. The U.S. Food and Drug Administration has not approved liquid suspensions. Suspensions prepared by pharmacists may lead to unreliable dosage. The tablets should be crushed daily, mixed with a few milliliters of water, formula or breast milk and fed to the infant. "

so this is why you have a tablet to give your baby- ask the pharmacist or maybe go to the hospital and ask one of the neo nurses they may have a trick or 2


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## CorasMama (May 10, 2002)

We used a syringe, and I would squirt the meds in the very back of her cheek, and immediately blow in her face. Then sometimes, massage her throat to make sure it all went down.


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## smeisnotapirate (Aug 24, 2007)

A pharmacist who actually DOES compounding (not your local Walgreens) is trained to create exact dosages from a solid to a liquid. Many will give you single-serving liquid forms (where I worked, we did it all the time because you're right- dosing can be tricky). I'd call around to your little pharmacies (mom&pop) to talk to the pharmacist. No pharmacist is going to risk compounding a liquid from a pill that shouldn't be compounded, and if you are able to talk to a few who can do research on it, it would save you a LOT of grief.

I agree - it's insane to give a newborn a pill, and it will only get harder.


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## 3*is*magic (Sep 13, 2007)

I see that you're in Boston, OP. Skenderian Apothecary in Cambridge (on Cambridge Street, I believe) is a compounding pharmacy. Perhaps they could help you.

You are in one of the best cities in the world to serve your baby's medical needs. Good luck!


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## kgraham (Jan 25, 2010)

I had the same situation. I also went to the internet for help and found basically nothing out there. Here is what we figured out.

Don't dissolve the pill in anything because it will stick to the sides.
1. Crush it and dump it into an oral syringe. (Put your finger over the end so it doesn't spill out on the floor, then flip it over and put the stopper in just a little bit of the way. Flip it back and flick the sides so the medicine is against the stopper and not your finger. Take your finger off and then push the plunger in about half way)
2. Then suck in liquid (I used breast milk for the first 6 months or so, it didn't dissolve as well but she didn't spit it out) cover the end and shake it.
3. Give it to the baby
4. Do a "rinse" (suck in liquid a second time)Give it to the baby

5. Wash everything except your pill crusher. Never wash your pill crusher.
This way you stop losing some of the pill each time. Just store it in a clean place and only use it for this specific med.

This is the perfect way for synthroid. Our endocrinologist was no help with coming up with a method but approved this one.

I created a blog to try to put some of this stuff that I had to figure out myself out there. If you want the rest of the tips from someone who started doing this at 4 days and has made it to 10.5 months here is my blog:
http://www.momgauntlet.blogspot.com/

Wishing you less stress!


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## Dov'sMom (Jan 24, 2007)

I don't know how big this pill is, or how much powder it makes, but I know when I had to give my DS antibiotics at a few weeks old and the doc said to give probiotics as well, what I would do is smear the powder over my nipple so he took it in when he nursed.


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## KatWrangler (Mar 21, 2005)

Any update?


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## itsang (Apr 12, 2006)

my son, who was born in november, was also dx'd with congenital hypothyroidism & has been taking a levothyroxine since he was about a week old. we just crush it between two spoons, then put it on our finger & into his mouth...he takes it very easily, as it tastes a little sweet, not bitter at all. we do sometimes have to hold his chin down a little with a finger to open his mouth, but often if we give it to him when he's in a happy mood or sleeping, he is just fine and doesn't fuss one bit. you're so right that it just doesn't work going the syringe/medicine dropper route...just gets stuck in the syringe. if you have any specific questions, feel free to pm me! good luck!









eta: it's easiest with two people...one to hold the baby's arms back & open her mouth; the other person to hold the medicine spoon & put the medicine in the baby's mouth.


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