Does anyone have any experience with TEC? Illness mentioned

[DeeEast]

It stands for Transient Erythroblastopenia of Childhood. I've googled it and know what the doctors say but I am hoping that one of the Mommies here will be able to fill in the blanks. DS has it. His hemoglobin was 4.8. Now its 4.7, which is actually up from 4.3. He was in the hospital but we brought him home since there is no treatment other than a transfusion, which the hematologists don't want to give him unless he is in heart failure (a direct quote from the attending hematologist).

His hemoglobin should be between 12 and 13 according to the doctors, so he is still extremely anemic, tires easily, sleeps a lot, as white as a ghost. I am a nervous wreck for many reasons, but not the least of which is because this diagnosis seems to be a default diagnosis for cases where they have ruled everything else out but don't know the cause.

I do thank God that they were able to pretty much rule out leukemia from the blood tests, but they didn't do a bone marrow test. I am trying to be on top of things so if anyone knows anything about severe anemia in 4 year olds and anything else I should bring up to the doctors, I would appreciate it.

[niccig]

I can't be of any help, and I hope someone can post more information for you tomorrow. I'm up late and had to reply, as you may be up checking replies. Hugs, and I hope you get some answers.

[c&j04]

Hugs! I can imagine it's all very upsetting. No personal experience but a friend recently was telling me about their battle thru this. Her DD is approx 3.5 now and after a year they are turning the corner and her #s are slowly improving every time they test. Hope you get more answers soon!

[SheriRae]

I do not have any experience with TEC but my son has a genetic hemolytic anemia called "G6PD deficiency." I'm sure your son was likely test for this?

I know how worrisome it is having a child with anemia. My son's anemia is usually brought on by fever or flu. Erik is usually transfused when his hemoglobin drops below 6.

As I said I'm not familiar with TEC so I'm not sure why they are unable to transfuse your son when his hemoglobin is in the 4's. I know my son can barely function when his counts are that low. Are they checking your son's count weekly now? Or how often?

Hugs to you and your little boy.

[DeeEast]

I do not have any experience with TEC but my son has a genetic hemolytic anemia called "G6PD deficiency." I'm sure your son was likely test for this?

I know how worrisome it is having a child with anemia. My son's anemia is usually brought on by fever or flu. Erik is usually transfused when his hemoglobin drops below 6.

As I said I'm not familiar with TEC so I'm not sure why they are unable to transfuse your son when his hemoglobin is in the 4's. I know my son can barely function when his counts are that low. Are they checking your son's count weekly now? Or how often?

Hugs to you and your little boy.

We are seeing pediatric hematology/oncology specialists and they do not want to go a transfusion until and unless he has more symptoms, other than the fact that he is a white as a sheet and has no energy.

They are testing him every two days or so. We see the ped. hematologist on Wednesday and I want to ask him how cautious we should be with his behavior, going out in public, etc. DH is not as cautious as I am but in my mind I think that his system is compromised and that we should be very careful about him being injured, getting ill, etc. and keep a close eye on him.