# Rare blood disorder (TEC) anemia



## firewoman

This is likely to be a long post so I'm sorry to write a novel but I need to get this down. My 18 month old daughter went through something very frightening this week. For the two weeks before this happened I was noticing small signs but I never put two and two together. Little things had changed like her portwine stain was lighter. I thought that perhaps this was a delayed response to the laser treatments she'd received. Her lips turned blue one morning because it was cold but they were not purple, they were blue. Once she warmed up she looked more normal but her lips still looked rather pale and I figured the warmer it got, the brighter they would get. Last Saturday I had her in the tub with my three and six year old. That is when I realized something was really wrong. Her siblings were pink and had very red lips. Her skin was pale, void of any color and her lips were as pale as ever. On Sunday I voiced this concern to a friend of mine who agreed that she looked pale. She and I reviewed some pictures I had taken of the baby in February and her lips were rose red, her stork bite in the middle of her forehead was visible and she had a vibrant color to her skin. It was a stark contrast and I began to worry.

On Monday morning (April 4th) I called my regular ped first thing. My office is large so you have to leave a voicemail for the triage nurse and wait for her to call back. She returned my call around 10:00AM that day and after hearing my report scheduled an appointment for Wednesday (April 6th) at 10:15AM. I asked her if there were any over the counter fingerstick hemoglobin tests on the market because I needed an answer and she said no. My older daughter has dance at 10:30AM on Mondays so I took both girls and sat down to watch in the studio. Normally, my 18 month old would running all around and I would have to take her out of the studio to run up and down the sidewalk. This day she sat in my lap the entire time. Again I felt a sense of forboding because this wasn't like her and she looked like a full blown vampire. I got home around 11:30AM and decided that Wednesday was too far away and I wanted her to be seen that day. I did not wish to go through the rigamarole of calling my ped's office and leaving a message and waiting for the nurse to call me back because it was nearly lunchtime and I knew it wouldn't be until after 1:30PM that she would even get back to me. Instead I called a small pediatric office near my home that I had never been to. They gave me an appointment at 2:30PM that day.

I took both girls and saw the doctor who was very thorough and wonderful. She explained the she would order a CBC, metabolic panel and an iron study that I could take to Children's hospital at my leisure in the next couple of days. She agreed that Bridget looked pale and examined her. Her liver and spleen were not enlarged and no masses were felt in her abdomen. She was about to send me on my way when I asked her to please do a finger stick and she thought that information wouldn't tell us anything and that the veinopuncture hemoglobin she would receive at the hospital would be more accurate. I agreed but I thought just knowing she was anemic would give me some peace of mind. I figured she is pale because she's anemic and I'll start her on some Floradix and she'll be fine.

That was not to be. Five minutes later the same pediatrician entered the exam room collected but I could tell she was very worried. She told me that I had very good mama instincts and that I needed to go home and pack a bag for us and go straight to the ER because her hemoglobin was only 5.6. She told me they would admit me and likely transfuse her. She did not wish to speculate what might be causing this anemia but she looked afraid for us.

I walked out with the two girls fearing the absolute worst and crying in the parking lot. I was so afraid she had leukemia. I called my husband and told him the situation and then packed a bag after calling my father to stay with our other children and hubby, Bridget and I were off to Children's Hospital ER. We were in the ER for 6 hours before we got any answers. They did a lot of blood tests and then did not want to speak to us about the results until they consulted with hematology. That made me think it was bad news. Our ER nurse came in and said they were still waiting for the consult and I just begged to tell me something and she rubbed my arm and said, "it isn't leukemia but we don't know what it is". Well, that it wasn't leukemia made me feel better and about 20 minutes later the pediatric ER fellow came in and said her iron and folate were normal and that all her other cell counts were normal but that her hemoglobin was 5.1 and that they would be admitting her into the hospital. She also explained that they would probably transfuse her. This was scary because we do not vaccinate and she is not protected against Hep B. When I made the choice to forego that particular immunization I knew there was always a small chance that my baby would require a blood transfusion but it never occurred to me it would be under circumstances like this.

By the time we got into our room in the Peckham Center for Childhood Cancer and Blood Disorders (that was a scary sign to read!), it was 11:00PM. We were all exhausted. The baby had fallen asleep in my arms and an orderly pushed my in a wheelchair holding her to our room. Once there, the nurse explained all the rules and what they would be doing and then a hematology resident and intern came in to talk to us. They asked lots of questions and seemed particularly giddy and interested in our daughter's case. I liked that. My husband went and got something for us to eat and then left to go home. Only one parent is allowed to stay in the room. Once he left the resident came back to tell me what he thought she had. He wrote it on the white board. He explained that he couldn't say this was her diagnosis but he thought that this is what she had and he turned out to be correct. The next morning we waited for the hematology fellow and attending to turn the resident's best guess into a diagnosis.

They got to our room at 11:00AM and explained that they believed she had Transient Erythroblastopenia of Childhood (TEC). It is a condition in which the bone marrow temporarily shuts down the production of red blood cells. It is extremely rare for a child to present with hemoglobin this low and not have it be an iron deficiency. The hematologist told me that a child has about a 5 in one million chance of developing TEC that causes such a slip in hemoglobin. They believe that it may happen more often but that the marrow kicks back into gear more rapidly preventing the child from becoming anemic so know one ever knows it happened. They also explained they are not entirely sure why this happens. There are some ties to viruses, mainly parvovirus (Fifth's disease), EBV, CMV and hep A. They tested her for parvo virus and we are still waiting on the results. I don't think it will be positive because I have seen Fifth's disease and she didn't have the rash.

They also explained that her latest CBC revealed a further slip of her hemoglobin. It was down to 4.3 from 5.1 just 10 hours earlier so they felt a transfusion was imperative. They said we could wait another 12 hours to see where her hemoglobin was then but that her reticulocytes were almost non-existent and that because they tell the marrow to make red blood cells, it wasn't likely that her number would be up later in the day. They explained that the lower her hemoglobin got the greater the stress on her heart. We chose to transfuse her ASAP. It was hard and she cried the first time. They have to take vitals a lot during a blood trasfusion and she hated being hooked up and having a blood pressure cuff on her arm or leg. She made it through the first one without any reaction so they gave her another transfusion in the middle of the night from the same unit of blood. That one was much easier because she slept through the whole thing. The next morning her hemoglobin was up to 8.2! They said we could go home with that number but that there was still 150 ml of the unit of blood she'd already received and that it would be better to tank her up in the hopes of preventing her needing another blood transfusion from a different donor before her marrow recovered. Once she received the third transfusion, we had to wait an hour to observe her and we were discharged on Wednesday night at around 5:45PM!

On Friday morning I returned for a CBC and retic count and her hemoglobin was 12.4 and her retic had rebounded slightly from 0.3 to 0.4. I go back with her next Friday for the same tests.

So, that is our tale. It was rough but I'm so thankful. We won the blood disorder lottery. There were many families in that ward that had not been as fortunate. There were many families that had been there for months. I felt guilty when we left only two days. I have NEVER received such superior medical care (other than my midwife!). All of the nurses were sympathetic and amazing with the baby. The entire hematology team was beyond my wildest dreams. Her doctor was so respectful and loved that we asked so many questions. He stayed in the room and talked with us for over an hour the second day we were there and for 30 minutes the day before. I left feeling very happy with the care my daughter received. I would love to hear from anyone whose child has had TEC. Is there anyone else out there?


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## LuminosaJane

No experience with TEC, mama but just wanted to reply that I hope you and your family are recovering well from your wild week. Best of luck to you as you figure out your course!


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## Truckerdoo

As the friend who agreed she looked pale, I am SO relieved this story has a happy(ish) ending. I've been gone in SF but am back now and can't WAIT to see you guys!!!


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## ellairiesmom

Just wanted to chime in & send your DD & your whole family love & prayers. You conveyed the experience so wonderfully. I am glad I clicked into this & read it Mama.

Also, I had never heard of TEC. I hope the road to recovery is an easy one for her.


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## firewoman

Quote:


> Originally Posted by *Truckerdoo*
> 
> As the friend who agreed she looked pale, I am SO relieved this story has a happy(ish) ending. I've been gone in SF but am back now and can't WAIT to see you guys!!!


I can't wait to see you guys, too! Bridget will be happy to see her buddy and so will I.

To all of you who have read my extremely long post, thank you! And thank you for all of your well wishes, too.


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## LeoneLover13

Hi there, I wanted to respond because my DD had TEC a few months back. They were the worst weeks of our lives although she never had to have a transfusion thankfully, she hasn't been vaccinated either.

We went in originally because she had horrendous diarrhea for months and she started to look very ill...pale, quiet, no energy, I thought she was anemic too since I am prone to being anemic. We took her to an appt. and they sent us straight to the Pediatric Specialist where we started the rounds of blood tests. Her levels were extremely low also, she had almost zero reticulation and was around a 5.5 on hemoglobin, so we had to go in every few days to monitor it, they didn't admit us, but they said if she went any lower they would have to transfuse her. It was horrible, she knew the room and the Dr's and would cry and scream as soon as we entered the room, my heart broke for her that week. She went up and down for a few days and then finally started gaining again and we went in once a week, then two weeks until she was consistently gaining and made it to a count of 8 and they released us.

We were also told it is extremely rare and usually caused by a random virus. I'm so happy to hear you had a good experience with your medical team, ours was less than satisfactory and was by far the most traumatic experience any of us have ever been through, but we had no other choice of care. I'm sorry you had to go through all that with your children, it is scary and exhausting, thank goodness it's all over now and I hope you can all take plenty of time to relax and enjoy your time together.


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## firewoman

Oh my goodness! I'm so excited to have found someone else that has been through this, although I know it was hard and would not wish the stress on anyone. I'm glad TEC is all that was wrong with your daughter. It makes me sad that her care providers were not satisfactory. Good medical care is one large aspect of where we live and our Children's Hospital in conjunction with UCSD really churns out some fine doctors.

Can you tell me how old she is and if you have any other children? Bridget is our youngest but they told us our three year old could have a greater chance of developing TEC than a child whose sibling hasn't had it. Apparently once children are six years old they out of danger from TEC. I'm very happy that she didn't have to be transfused. Bridget's hemoglobin was just free falling and I could see from the rapid pallor she developed and then from her behavior that she wasn't feeling well. I'm thankful that the blood trasfusion was available. I keep looking back trying to figure out what could have made her marrow shut down. You mentioned diarhhea in your daughter and our children were all sick with some sort of stomach virus that caused vomiting and diarhhea for a few days at the very beginning of the year. I wonder if that is when her marrow shut down. She and my three year old also had a minor cold at the beginning of February but it really didn't bother Bridget or last more than a few days. It was much worse in the three year old who felt poorly and had little energy for about a week. What bothers me the most is that I'll really never know why this happened, unless her parvo test comes back positive. I don't like how little they know about TEC.

I took Bridget in for her follow up two days ago and her hemoglobin was 12.5 and her retic count was 2.4 so it seems her marrow is bouncing back nicely. I'm so glad your little girl recovered and thank you so much for posting. It makes me feel less alone to know other mamas have been through this, even though I know it could have been so much worse.


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## mkksmom

How scary! But how wonderful that you trusted your gut and took good care of her. Glad to hear that her counts were good again!


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## Hopeandfaith

Hi, I have just found your story while researching on the internet, as we were told they thought that our son had TEC, As our son presented the same, Im really sorry if this reply is long winded, but lots to say, Our son was getting paler, but he had always been pale as he is ablonde, and he was complaining of shortness of breath and his legs hurting, so we took him to the docs and they said he had a tummy bug and sent us home with calpol. 2 days later he was in the bath with me and he was as white as a sheet, so i decided to take him back to the docs this was a thursday, and she said the calpol wasnt shifing it, so gave us some tummy medication and told us to carry on with the calpol as his temp was a little high but not bad. So trusting our doctor we took him home and carried on. On saturday morning, his eyes were yellower his lips were bluer, and you could she is pulse beating in his neck, which the doc on examination said it was symtoms of tummy flu on the thursay. But something inside me didnt feel right, so off we went to A&E, we saw the triage nurse and she moved us to a seperate room, and then came bk within minutes with the head nurse, who looked at him, and they both came bk with the doctor. who looked over him and told us he needed to go upstairs to she the peadiatric doctor, we moved within 30mins, we were put on a ward with other children then moved to a side room, they took a blood sample after fitting him a canular, and within the hour his results were bk. His hgb was 3.2, and he was suffering form a heart mumar as it was working overtime to keep him alive, they told us we needed to be in isolation, for infection and both me and his dad could stay with him, We were told were going to moved in the morning to sheffield childrens hospital were they would care for him. And he would on arrival have more blood tests and then a transfusion. Throughout the night the nurse was in every 30 mins to monitor him,. My heart sank at the thought of losing him. that following morning we were transferred to the childrens hospital, and were meeted at the doors by a speacialist and nurse we were escorted to a new isolated room, were he had more blood taken within 20 mins his results were bk. he had dropped again to 3.0 so they transfused straight away, we were told about Tec and what it was and that he would be fine with in days, We were so happy, we were told he would be kept over night and that he would have a second transfusion and then we could go home. On the monday morning they came and took more blood to check hgb and do another full blood count. Then he was on his way for his second transfusion. While we sat with our son having his transfusion, a mass of doctors all piled in the room and told us they needed to talk. they told us that his blood had gone up fron the transfusion on sunday, to 4.3 and that his white cells and platelletes had dropped so we were not allowed home, he had to have more transfusins so his body would handle the ansientic so the could do a bone marrow aspiration also a bone marrow biopsiy and a lumbar puncture. We agreeded to what needed to be done. On the wednesday we were allowed home for the night, but had to be back for thursday at 8am for his operation and test. We were told 2 weeks for results but had to keep goin inbetween for blood check ups and transfusions as he kept dropping. When the results came bk we were told jake doesnt have lukeima, but we need to do more tests. Our son is still at hospital alot and we are now just waiting for him to be strong enough to start treatment for his condition he has a rare blood disorder that will effect him for the rest of his life, as there are normally abnormalities in the child with the condition it took the doctors alittle to find as our son doesnt have any. but with hope and a little faith it will be a longer lived life. He is very strong, and he has surrived this long, we were told on arrival that he should of been dead with how low his hgb was. I am so honoured to read your story and know that your daughter is well. as she was so young to go through that. My son is 4 and its hard, and I know how you must of felt, how your heart stops and you cant breath. Well we are bk to hospital tomorrow for another blood and she if we will staying in for more transfusin, before treatment can start or weather the transfusin was enough. Our sons hgb was at 8.9 last week and it hast been higher than that in a long time. So we have a lot of faith for this week. we started this long battle on the 4th of may 2011 and we are now on 5th july. Im sorry if I gone on alittle bit too much but I just needed to get it out. so thank you. xx


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## organicviolin

how scary for all of you who are dealing with or have dealt with this rare disorder. My hugs go to all of you and I am so glad to have read this post. You are all strong mama's who prove to be inspirational to us all. thank you for sharing and may everyone heal well and quickly.


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## firewoman

Hopeandfaith-I'm so, so sorry about everything that you, your husband and Jake are going through. Does his blood disorder have a name? I'm so happy to hear he doesn't have leukemia, but I know that even without cancer blood disorders are frightening. I would love to hear more about your story as it evolves. Please post back here to let us know if the treatment will begin. We aould love to help support you through all of this. I know how scary it can be.


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## LeoneLover13

FireWoman- Sorry I didn't write back sooner, I haven't checked my MDC messages in a while!

To answer your questions, my DD will be turning three October 10th. I am now 8 months pregnant with our second due the same day as DD's birthday 

We weren't told much else about the blood disorder, honestly I don't think they knew much being a military hospital. They never said anything about siblings chances of having it, I was told basically it is extremely rare and is caused by possibly a few different viruses, one being Parvoovirus B19, which she had a few viruses shortly before this time, and I wasn't told anything else about it effecting her future health, or that we should be following up with her blood work ever.

We are now out of the military (thank goodness!) and I plan to see a more alternative pediatrician soon to have her checked out. We just moved to Flagstaff, AZ and she started looking pale and thin again to me which I attribute to possible low iron levels like I have because of the 7000ft elevation. I am so glad that is all over, my husband and I have basically blocked out the whole ordeal because it was so heart-wrenching for us to go through with her, I am SO glad to hear that your daughter had good care, it makes me happy to know that Jade's experience isn't the norm.

-Vicky


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## cpa8

I really appreciated reading your tale. It sounds very similar to ours. We just found out today that it seems like our son has TEC too. His Hemoglobin is down to a 6 from an 8 a few days ago and they are testing again Thurs to see if he needs a transfusion. We were so confused why he could be anemic but with high iron and the pediatrician wouldn't tell us anything...just that we had to meet with a pediatric hematologist. Since he is in Children's Hospital with the oncology dept we are sitting there fearing the worst in the cancer unit and almost praying that it really is just simply TEC and not Leukemia or something. I appreciated hearing your story and that it ended well. Did they say the TEC was caused by a virus and if so is it contagious? We have other children and I'm worried for them too.


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## Asiago

I just happened to read this thread (I realize that it is dated) and something clicked when I heard the parvo mention. Also for those with children diagnosed with TEC, I am sorry to hear it and wish the best. The reason I am posting is because there is a parallel in veterinary medicine. A type of anemia called Auto Immune Hemolytic Anemia is often linked to vaccination, it leads to an overstimulated immune response which in turn begins an auto immune destruction of the body's own red blood cells.

This led me to search online for vaccination adverse event and anemia in children, and I found a study of DTP vaccine adverse reaction and hemolytic anemia. From what I understand TEC is a hemolytic anemia also (meaning prematurely the RBC are destroyed). I don't know if there is any corrolation of TEC with vaccination but it may be worth a search. It seems there are various events that could lead to the premature destruction of RBC, but it is known in veterinary medicine that vaccination is one factor in the onset of Auto Immune Hemolytic Anemia.

There is more on the subject in the following link: Perdue Study and Autoantibodies: http://www.dogsnaturallymagazine.com/purdue-vaccination-studies/

Edited to add, Auto Imuune Hemolytic Anemia is also found in humans, I just found a study pertaining to it's occurence after Influenza vaccination.


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## relieved mother

I was very interested in your posting. I have a 3 year old who has just gone through exactley the same thing. Diagnosed with tec as well. I had the same fears as you. My daughter thankfully didn't need a transfusion but had a three day stay in hospital. Her red blood count is improving very well but still not back to normal. Another blood test next week to see how she is going and another one before we see the specialist in 3 weeks. Her colour is improving and her energy levels are much better, she is nearly back to normal, I thank the lord she is going to be ok. We also we very lucky with her diagnoses. How is your child going now? I havn't been told if it can happen again.


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## jessierodriguez

im not sure how this all comes down but they have me convince this might be lukemia cancer please tell me something better please i cant stand the intinceapation


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## bernadett

Omg. I know it is 2years old post but i was searching and found his. last week my son had the sam exact thing. like identical story but his num. was 3.5.

It was extremely scary and his check up is not til wednesday but we didnt vaccinate him fully eiher, and he had a set of 3 fusions from one donor, and doctors acted exact same way. we r also in San Diego. Crazy to me... let me knowif you still check this thread...


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## becca Ak

Quote:


> Originally Posted by *firewoman*
> 
> This is likely to be a long post so I'm sorry to write a novel but I need to get this down. My 18 month old daughter went through something very frightening this week. For the two weeks before this happened I was noticing small signs but I never put two and two together. Little things had changed like her portwine stain was lighter. I thought that perhaps this was a delayed response to the laser treatments she'd received. Her lips turned blue one morning because it was cold but they were not purple, they were blue. Once she warmed up she looked more normal but her lips still looked rather pale and I figured the warmer it got, the brighter they would get. Last Saturday I had her in the tub with my three and six year old. That is when I realized something was really wrong. Her siblings were pink and had very red lips. Her skin was pale, void of any color and her lips were as pale as ever. On Sunday I voiced this concern to a friend of mine who agreed that she looked pale. She and I reviewed some pictures I had taken of the baby in February and her lips were rose red, her stork bite in the middle of her forehead was visible and she had a vibrant color to her skin. It was a stark contrast and I began to worry.
> 
> On Monday morning (April 4th) I called my regular ped first thing. My office is large so you have to leave a voicemail for the triage nurse and wait for her to call back. She returned my call around 10:00AM that day and after hearing my report scheduled an appointment for Wednesday (April 6th) at 10:15AM. I asked her if there were any over the counter fingerstick hemoglobin tests on the market because I needed an answer and she said no. My older daughter has dance at 10:30AM on Mondays so I took both girls and sat down to watch in the studio. Normally, my 18 month old would running all around and I would have to take her out of the studio to run up and down the sidewalk. This day she sat in my lap the entire time. Again I felt a sense of forboding because this wasn't like her and she looked like a full blown vampire. I got home around 11:30AM and decided that Wednesday was too far away and I wanted her to be seen that day. I did not wish to go through the rigamarole of calling my ped's office and leaving a message and waiting for the nurse to call me back because it was nearly lunchtime and I knew it wouldn't be until after 1:30PM that she would even get back to me. Instead I called a small pediatric office near my home that I had never been to. They gave me an appointment at 2:30PM that day.
> 
> I took both girls and saw the doctor who was very thorough and wonderful. She explained the she would order a CBC, metabolic panel and an iron study that I could take to Children's hospital at my leisure in the next couple of days. She agreed that Bridget looked pale and examined her. Her liver and spleen were not enlarged and no masses were felt in her abdomen. She was about to send me on my way when I asked her to please do a finger stick and she thought that information wouldn't tell us anything and that the veinopuncture hemoglobin she would receive at the hospital would be more accurate. I agreed but I thought just knowing she was anemic would give me some peace of mind. I figured she is pale because she's anemic and I'll start her on some Floradix and she'll be fine.
> 
> That was not to be. Five minutes later the same pediatrician entered the exam room collected but I could tell she was very worried. She told me that I had very good mama instincts and that I needed to go home and pack a bag for us and go straight to the ER because her hemoglobin was only 5.6. She told me they would admit me and likely transfuse her. She did not wish to speculate what might be causing this anemia but she looked afraid for us.
> 
> I walked out with the two girls fearing the absolute worst and crying in the parking lot. I was so afraid she had leukemia. I called my husband and told him the situation and then packed a bag after calling my father to stay with our other children and hubby, Bridget and I were off to Children's Hospital ER. We were in the ER for 6 hours before we got any answers. They did a lot of blood tests and then did not want to speak to us about the results until they consulted with hematology. That made me think it was bad news. Our ER nurse came in and said they were still waiting for the consult and I just begged to tell me something and she rubbed my arm and said, "it isn't leukemia but we don't know what it is". Well, that it wasn't leukemia made me feel better and about 20 minutes later the pediatric ER fellow came in and said her iron and folate were normal and that all her other cell counts were normal but that her hemoglobin was 5.1 and that they would be admitting her into the hospital. She also explained that they would probably transfuse her. This was scary because we do not vaccinate and she is not protected against Hep B. When I made the choice to forego that particular immunization I knew there was always a small chance that my baby would require a blood transfusion but it never occurred to me it would be under circumstances like this.
> 
> By the time we got into our room in the Peckham Center for Childhood Cancer and Blood Disorders (that was a scary sign to read!), it was 11:00PM. We were all exhausted. The baby had fallen asleep in my arms and an orderly pushed my in a wheelchair holding her to our room. Once there, the nurse explained all the rules and what they would be doing and then a hematology resident and intern came in to talk to us. They asked lots of questions and seemed particularly giddy and interested in our daughter's case. I liked that. My husband went and got something for us to eat and then left to go home. Only one parent is allowed to stay in the room. Once he left the resident came back to tell me what he thought she had. He wrote it on the white board. He explained that he couldn't say this was her diagnosis but he thought that this is what she had and he turned out to be correct. The next morning we waited for the hematology fellow and attending to turn the resident's best guess into a diagnosis.
> 
> They got to our room at 11:00AM and explained that they believed she had Transient Erythroblastopenia of Childhood (TEC). It is a condition in which the bone marrow temporarily shuts down the production of red blood cells. It is extremely rare for a child to present with hemoglobin this low and not have it be an iron deficiency. The hematologist told me that a child has about a 5 in one million chance of developing TEC that causes such a slip in hemoglobin. They believe that it may happen more often but that the marrow kicks back into gear more rapidly preventing the child from becoming anemic so know one ever knows it happened. They also explained they are not entirely sure why this happens. There are some ties to viruses, mainly parvovirus (Fifth's disease), EBV, CMV and hep A. They tested her for parvo virus and we are still waiting on the results. I don't think it will be positive because I have seen Fifth's disease and she didn't have the rash.
> 
> They also explained that her latest CBC revealed a further slip of her hemoglobin. It was down to 4.3 from 5.1 just 10 hours earlier so they felt a transfusion was imperative. They said we could wait another 12 hours to see where her hemoglobin was then but that her reticulocytes were almost non-existent and that because they tell the marrow to make red blood cells, it wasn't likely that her number would be up later in the day. They explained that the lower her hemoglobin got the greater the stress on her heart. We chose to transfuse her ASAP. It was hard and she cried the first time. They have to take vitals a lot during a blood trasfusion and she hated being hooked up and having a blood pressure cuff on her arm or leg. She made it through the first one without any reaction so they gave her another transfusion in the middle of the night from the same unit of blood. That one was much easier because she slept through the whole thing. The next morning her hemoglobin was up to 8.2! They said we could go home with that number but that there was still 150 ml of the unit of blood she'd already received and that it would be better to tank her up in the hopes of preventing her needing another blood transfusion from a different donor before her marrow recovered. Once she received the third transfusion, we had to wait an hour to observe her and we were discharged on Wednesday night at around 5:45PM!
> 
> On Friday morning I returned for a CBC and retic count and her hemoglobin was 12.4 and her retic had rebounded slightly from 0.3 to 0.4. I go back with her next Friday for the same tests.
> 
> So, that is our tale. It was rough but I'm so thankful. We won the blood disorder lottery. There were many families in that ward that had not been as fortunate. There were many families that had been there for months. I felt guilty when we left only two days. I have NEVER received such superior medical care (other than my midwife!). All of the nurses were sympathetic and amazing with the baby. The entire hematology team was beyond my wildest dreams. Her doctor was so respectful and loved that we asked so many questions. He stayed in the room and talked with us for over an hour the second day we were there and for 30 minutes the day before. I left feeling very happy with the care my daughter received. I would love to hear from anyone whose child has had TEC. Is there anyone else out there?


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## becca Ak

My son was diagnosed with TEC 15 years ago in Anch Ak the only sign he showed was being pale. They told me at the time he was 1 of only 400 cases known... However he was unique in the fact he acted like a perfectly normal almost 3 year old boy... Although his CBC count was that of a 3 month old baby. He spent a week in ICU his situation was almost fatal, Showing no signs caused his body to start shutting down they said he was within 24 hours of going into cardiac arrest. He was first thought to have leukemia. He had two transfusions that first week and about a month later he required another. His blood counts are still not normal and he is now 17 but he's healthy!!! I too was told they do not know why it happened... He had pneumonia prior and it's thought his body may have stopped producing the red cells and more white to fight the infection. My son was diagnosed by pure luck... I took my infant daughter to the ER and the triage nurse said my son looked pale.... She asked to admit him... I argued he was just fine.... She replied I'm sorry but something's wrong he looks like a walking dead child... That scared me but still he seemed fine he was running, laughing, playing, being a toddler.... I let her admit him she went to the dr and asked him to run the CBC count.... That triage nurse saved my sons life... I was told if Another 24 hours passed he would have gone into cardiac arrest and died. Every dr was waiting for him to be admitted and brought to his room they were in awe he could function his body was near death they couldn't believe he showed no symptoms other than being pale!!!


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## Etrumble

My 33 month son was diagnosed with TEC today. I took him to the doctor yesterday to follow up on a concern for an allergy reaction. He was not sick, not pale (at that time). They drew blood to do an allergy test, and I got called 4 hours after I left the doctor's office and told I needed to bring him back in immediately and to prepare to have to go up to the children's hospital for a transfusion. She told me that she needed to verify that the results from the lab were from his blood (that it hadn't been contaminated) and that his red blood cell count was "dangerously low" and that she was consulting with a hematologist from the children's hospital. We got back in and did a finger poke, which confirmed our worst fears, it was his blood. She told me several times he would most likely be admitted that night. The hematologist called her back and said she wanted more labs done, that she figured he was anemic and wanted to test his iron levels, but that he could go home for the night. (Our wonderful, amazing pediatrician had said she didn't think it was anemia because it wasn't "presenting itself" in the normal way.) Only after the first blood draw did he start looking pale. He had complained about being tired earlier in the week and about his legs hurting occasionally. We went in for another blood draw (just like another post read, he recognizes the lab doors and cries as soon as we go into the parking lot, saying "I don't want an owie") and we were told the hematologist would call us with the results Saturday (today). She called and told us his iron levels were good and that we did not need to continue to give him the iron supplement they told us to start the night before. That is when she told us about TEC. Have all the children that have been posted about in this thread healed completely, never had another issue with this? How long did it take to resolve once you had the diagnosis? I am also curious about the mention of other symptoms mentioned in the primary post (that said there were other symptoms but didn't put them all together), what were these other symptoms? There is not a whole lot out there about this TEC. Thank you so much for posting this!

We are still in the waiting and close monitoring process. Another blood draw on Tuesday and again on Friday. Hoping to keep him out of the hospital all together and no transfusion!


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## bbyington

Wow. I had no clue that there were others out there! Your story is EXACTLY like ours. In 2009 Our 15 month old daughter had been sick. We thought it was just your typical virus that she could have contracted from our other two school age-children or from a child from church. But after a week, still the same. Nothing we did worked. My wife too really paid attention to her color as well. She's already pale with blonde hair and blue eyes, but she had noticed the dark circles under her eyes, and the purple lips. She had also become very non-active and lethargic at times even sleeping almost 10 hours a night. We had scheduled an appointment with our PED the next day, but then my wife had become sick, so she asked me to take our daughter to the doctor that afternoon. Once we arrived and they did their typical check up/vitals/stats, and she suddenly jumped up and left the room. She then returned with half of her staff, and they immediately had me administered oxygen. One nurse looked at me with fright on her face and said "You have 15 seconds to decide what to do with your daughter. Either I call to air lift her to Gainesville, or we send her to the local ER and an Ambulance from St. Petersburg All Children's will come get her." Having just moved to Tampa area from St. Louis, Mo I blurted out "All Children's!" I asked what in the world was going on, the doctor looked at me, and said "In all my years of profession, I don't exactly know what's going on, but I will tell you, she's dehydrated, I have detected a heart murmur, her body is not oxygenating, her CBC is below a 4, and she is beyond the capability of this office. We will do everything we can until the ambulance arrives." One nurse asked for my car keys, and she said she would go out to our vehicle and get her car seat for us because the ambulance would put her on the stretcher in her car seat. I then called my wife, and tried my best to explain everything and told her to get here as quick as possible. The ambulance would only wait for her for 10 min. My in-laws were at my house and the time so my father in-law drove my wife, as my mother in-law stayed with the other children. When we arrived at the local ER, we still had no clue as to what was going on. They were having trouble starting and i.v. Not only was she only 15 months old, her veins were collapsing. They were even looking to try on her feet or her groin. THANK GOD, the All Children's ambulance crew arrived and she walked up and in one shot got the vein. It took a little while to get transferred to All Children's because her organs where starting to fail. To shorten the story we spent two nights in the ICU, received two transfusions and she received multiple tests, including the spinal bone marrow biopsy which made my wife almost pass out and she had to leave the room. We too thought we were looking at leukemia. After the second day, the Oncologist ruled that out. On the third day we were starting to see improvement. Her vitals were looking good. Her fever was gone. And the urologist said her kidneys were working properly again! They then moved us out of the ICU into a normal room. But there was still no clear answer as to what was going on. That is when the Hematologist Finally told us we were looking at TEC. The Hematologist looked me right in the face and said "I don't know who you are, or what you believe, but I can tell your people of faith, so who ever you believe in, you better thank them because 48 hours ago, you would have put your daughter to bed and she would have died in her sleep" Before it was all said and done, she had to have one more transfusion. And they let us go home. We had to have two more weekly visits before she was officially released. She was put on a few different medications; the worst was the iron drops. That junk just smelled just plain nasty, and of course she fought us on taking it, but after that bottle was done, she didn't have to do it any more. But they told us to always be on the look-out for these symptoms, and she should out grow it by the age of three. She is now 6 years old, and havn't had any trouble since. She's half way through her kindergarten year, and every night when we put her to bed, we thank God she is still here!


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## johail

My daughter had this 21 years ago. And I have researched this often. I am curious if all of our children have A- blood type? And if all of us mothers are also negative blood types with a spouse with negative blood type. I had to have a rhogam shot when I I was pregnant because I did not know what my husbands blood type was. I think the shot might have caused the TEC. I did not get the shot with my second child because I knew we were both rh negative. She never became sick with TEC. Her blood type is 0 negative. I also wonder if any of your children have had another 1 in 5 million chance of anything happening to them? If only we could win the good lottery and not bad. I have gone through a number of things with my oldest child still to this day that might come from the TEC. Another 1 in 10 million. Would love some feedback. Thank you, PK


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## Liza-m

Hi,

First, i am Dutch so sorry for my poor English!
Our daughter has had TEC at the age of 17 months. The doctor did not know what was going on and we have been stuggeling for 6 weeks. I have been countless times too the Docter but I always came back with just antibiotics. finally she has been hospitalized with a bloodcount of 2.1!
We now know she was nearly dead but we are thankfull to get her tranfusion in time.
I never found an other parent in the Netherlands who has experienced the same. I am so glad i found this site!

Our daughter is now 4 years old and is doing well. She still suffers al lot of illnesses and seems to have has difficulty to recover every time. Does anyone recognize this?

She has bloodtype B en we are both positives. So completely different from the last post here.


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## happyjeffy

Wow I am reading your experiences after a scary few days for our family. I am happy to find personal stories and compare. My Bridgette just turned 2 and all all week had been fighting some kind of virus. She was throwing up and had some kind of physical pain either head or stomach maybe even nausea but didn't have any fever or diarrhea. I took her to the pediatrician on Thursday and all weekend everyone was commenting on how yellow she looked. I thought jaundice but her eyes were not yellow. I took her back to the pediatrician on Tuesday morning and they did a CBC and then doctor came back in shock saying that her hemoglobin level was super low and her blood sugar super high. He was concerned and directed us to to go to the ER for further testing immediately. So we did and they did all sorts of testing. Urine, 2 ultrasounds, 2 xrays, blood. Again her hemoglobin level was 5.3 and they said she looked sallow. When the ER doc got back to us she said she didn't think it was leukemia because she saw some newer red blood cells but she wanted to transfer us to the children's hospital so the hematologist could run more tests. We were in shock and hearing the words bone marrow and cancers freaked us out but we didn't think ahead too much and tried to just go with what was happening. after they transferred us they asked if we were open to do a transfusion. I really really did not want to do this I was scared of the implications but said if she needs it to survive then of course. Luckily my Bridgette did not need a transfusion. Something clicked and she started making a ton of new red blood cells. The hematology dept and ER doctors confirmed it was TEC and said bone marrow suppression of red blood cell production was most likely triggered by a viral infection 2 to 3 weeks prior which was on or around her birthday and we compared pictures to see if we could pinpoint her color fading. We noticed she looked more normal pink color, pink lips, in her b day pics. We feel so lucky that the grandma's kept saying that she was yellow and that something was wrong because aside from the puking I didn't really notice anything. We just got out of the hospital and already followed up with the hematologist and her numbers are looking much better. This whole thing has been really quick and scary but I am feeling so blessed that it is only this and not something long term or terminal! We have another child as well my 3.5 yr old dylan has down syndrome and we were introduced to doctors bringing us shocking news early on so maybe this helped us handle this situation better. Someone was curios about blood types my daughter has O negative blood and I am A Positive. My daughters blood had plenty of iron and the doctors said what great shape she is in for having such low hemoglobin. This is all new to me but to the moms that have previously posted thank you! I love that I can search the Web and find other parents that are going through similar situations. Thank u for your honesty


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## Guest

These stories are unfortunately all too familiar to me. Two of my three children had/have TEC. My girl got it at about 19 months a couple of years ago now and my boy, 18 months currently has it. I agree, these are the worst weeks any parent has to go through. Both kids have IDENTICAL blood reports. But first time round it was suspected that girl had iron deficiency and was treated as such. Coincidentally her retics began to go up at the same time as the iron started so it was supposed that as treatment was working that that is what it was. Anyway, she recovered fully well before her 2nd birthday.

Much the same as many of your stories, a few weeks ago my son began to follow the same trend if gradual pallor. He is blonde (white almost) so was hard to tell if he was pale at all really. But I took him to the Dr and went for blood tests. He was originally 5.4 but within a couple of days, dropped to 4.3 with retics at 2.5. Even though it was thought he had TEC, based on the blood results, they needed to do a marrow biopsy to 'rule out leukemia and other forms of aplastic anemia'. Even though it's the second time we'd had this discussion, it still strikes fear into anyone. I suffer severe anxiety anyway so was beside myself. So we went ahead with it. His levels were 3.8haemaglobin and 1 reticular count. After a relatively short wait, it was confirmed that it's TEC... phew!!!

Fast track to today, just 9 days post biopsy and we are looking at a haemaglobin of 4.3 and reticular count of... wait for it... 198!!!! Yay He has low neutrophils which is standard I am lead to believe so needs to avoid even the most simple of illnesses like the common cold (hard to do when mum and sister have colds and dad and brother have tummy bugs) so it's face masks and isolation all round ... but anything. 

We have been fortunate to avoid transfusions in both kids as they were still incredibly bright and bubbly so it's close monitoring to check for downhill trends like difficulty breathing. The imminent cold is also a threat. 

Now we are doing one blood test per week and this week coming up is the first we don't have to see the lovely staff in haematology and oncology, but I won't miss them sorry to say!

They say TEC is very rare but I wonder if this is the case really. My thoughts are that sometimes it's just really hard to pick up as kids are often pale after viruses. So I say, yay to us parents for going to get it checked and doing the absolute best for our precious little ones. It's a horrible journey, most if all for the kids, but looking at my now 3.5 year old girl with perfect blood counts... there is definitely life after TEC.

Good luck to all of you who are just beginning this journey. Ours hasn't finished, by a couple of months still yet, but I'm hopeful.


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## Jessy Lakiere

Hey Liza-m

Ik zie dat je ook Nederlands praat, kunnen we misschien even privé praten over Tec ? @Liza-m


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## Marilyngurl22

Just wondering if anyone is still on this thread. My son had TEC earlier this year that required a blood transfusion. Your stories are incredibly similar. I can relate to all of it. I've never spoken with another parent of a child that had it so I would love to connect. I'm also curious if any of your children had health issues following the TEC. Even after they were released from care of hem/onc. My son has had an array of issues even though he was released from care in early February. His hemoglobin has been fine, but we are looking at various autoinflammatory issues now. Of course the doctors don't think it's related but I know it is. 2 incredibly rare disorders in one child back to back is more than coincidence. So I am on a mission to advocate for my son and see if I can put the puzzle pieces together. He is currently being seen by rheumatology. I'm hoping beyond hope you guys still get notifications for this post!!! Thanks!


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## Bugzbee89

Hi everyone. I have a sister n law that just found out 2 days ago that her 1 and a half yr old little boy has a rare bllod disease(TEC). We understand the gyst of it all but she still has so many questions that she feels wont be answerd because its so rare . 5 out of 100,000 are diagnosed with it. We are all trying to help her and support her and answer as many questions as possible, but we dont really know how to comfort her about the situation. I feel lile she needs to speak to a family that has dealt with it, so they can help her through this difficult time. Can anyone or any family come foward about their experiences, only if you feel comfortable with discussing it. I just want her to have all of her questions asked so she has a little comfort.


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## Nava4

Hi,I 'm looking for an answer because doctors can't give it me.I am from Greece, so I 'm sorry for my english. When my daughter was 5,5 months had done a vaccine and after this began our drama.we went in our doctor three times because she had cough and the last time our doctor said us that something is bad with my daughter's color and she send us for blood exams.The hb was 3.8, platelet 198000 and reticulocyte count 1,75.After this number my daughter need transfusion. From then until now, namely 4 months we have done a lot of exams but all of them are fine except bone marrow biopsy...it show that the bone marrow produce some but not enough erythrocyte and there is a problem with their maturation. Our doctor say something very general,that my daughter has "bone marrow failure" o.k!he can't understand what she has.So, we are still with transfusion because if they don't decide about her disorder they can't do enything else. My daughter has very good development and she look like very well even when her hemoglobin is 6,5. We don't know what we must doing about our child.If someone has similar experience or could suggest someone doctor or hospital in everywhere who has to suggest something different about my daughter's situation please contact with me.Thanks!


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## Giselle river

Nava4 said:


> Hi,I 'm looking for an answer because doctors can't give it me.I am from Greece, so I 'm sorry for my english. When my daughter was 5,5 months had done a vaccine and after this began our drama.we went in our doctor three times because she had cough and the last time our doctor said us that something is bad with my daughter's color and she send us for blood exams.The hb was 3.8, platelet 198000 and reticulocyte count 1,75.After this number my daughter need transfusion. From then until now, namely 4 months we have done a lot of exams but all of them are fine except bone marrow biopsy...it show that the bone marrow produce some but not enough erythrocyte and there is a problem with their maturation. Our doctor say something very general,that my daughter has "bone marrow failure" o.k!he can't understand what she has.So, we are still with transfusion because if they don't decide about her disorder they can't do enything else. My daughter has very good development and she look like very well even when her hemoglobin is 6,5. We don't know what we must doing about our child.If someone has similar experience or could suggest someone doctor or hospital in everywhere who has to suggest something different about my daughter's situation please contact with me.Thanks!


Hello I was reading your testimony my daughter is suffering something similar how is daughter doing dis they found out what was the reason she wasn't producing red blood cells.y daughter still on transfusión they haven't confirm if is tec cause her retyculocites still low and her hemoglobin stills dropping.
Hoping the best to you and your family.


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