I was reading another post of yours. Just curious if you were up to sharing your story. I just wondered about the birth thing and the cause of what happened.

By Lauram on Thursday, March 23, 2006 - 01:58 pm:

Sure. My sons both had hyperbilirubenemia (severe pathological jaundice). Both were breastfed (risk factor) and early (37 and 36 weeks). My first (almost 9 now) had a huge bump on his head (risk factor). My first is the one who is really in trouble. He was at 14 (bilirubin) when he was discharged and I was told to go to the pediatrician the next day. At that point (Day 3) it was 21 and we were told that it was TOO LOW for the insurance company to pay for him to be rehospitalized. That night he became severely dehydrated (he was not eating at all- he lost a full pound) and was impossible to wake. We put him in the bath, tried to undress him, but he would not wake to feed. At that point, the only thing we were offering him was pedialyte. He went limp in my arms- like a dead baby. I called the hospital and the nurse told me it was normal for a jaundiced baby to be sleepy (NOT!). I went to the pediatrician the next AM and he was completely yellow- head to toe. A sample was taken and the results were to be delivered STAT. I was told not to go home. (I went to my mom's because she lives near the hospital). The ped called four hours later and his bili was at 26. Brain damage occurs at 25 (It's called kernicterus). He was rushed and put on triple bank phototherapy and given fluids for the dehydration. They told me he might die. THen they said he might have MR, never walk, have trouble talking... etc. None of that happened. We though he was a success story. At 2 1/2 he started having behavioral troubles. At this point, he is dx with: Tourette's, ADHD, OCD, sensory integration disorder, PDD-NOS. He also has been diagnosed with anxiety, depression and has been suicidal. He is also extremely bright. RIght now, he has a full-time aide at school. (The last two quit in the past month). He is really struggling with the inclusion model. They are thinking of pulling him out and giving him some 1:1 tutoring for a bit until they can get him mainstreamed again. The district has hired someone to do a Functional Behavioral Assessment and someone to do a second opinion about the autism. We are struggling with medications- we just can't quite get it right. I'm trying to get an appointment with an expert in Tourette's at Yale to give a second opinion to his psychiatrist as she is stumped. We are trying to figure out if he needs an MRI and the pediatrician might be sending us to Columbia or Mass to see a pediatric neurologist who specialized in severe cases. My other son (the premature one) was discharged with a bili of 12, went to the ped the next day and it was 19. The ped fought to have him admitted that day (Day 3) and by the time he was admitted his bili was 25. He went limp in my arms about an hour before he was admitted. He was treated and released in 24 hours. He just turned 4 and so far, so good. He is extremely active- I mean EXTREMELY but so far has been doing really well in the school environment. He's very lucky to have a big brother. IF he hadn't, he probably wouldn't be doing so well. THe neonatologist told me when he was discharged that they had a "plan" for my third. I told him I was happy for him, but NO THANK YOU!

By Kaye on Friday, March 24, 2006 - 10:19 pm:

Thanks for sharing...i have more to say later, but I am on the run. But wanted to let you know that I read it and appreciate it

By Reds9298 on Sunday, March 26, 2006 - 09:40 pm:

I also appreciate your story. Thank you for sharing it. I've never heard of this type of jaundice before.