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Old Tue Jul 16, 2013, 11:48 AM
curlygirl curlygirl is offline
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Join Date: Jun 2013
Posts: 151
Hello! My son completed his ATG over the weekend. He had an allergic reaction to it despite pre-meding with benadryl and prednisilone. He broke out in poison ivy-like hives all over his body during treatment, so they had to slow the infusions down from 6 hrs to 12 hrs and give him intravenous hydrocortisone. He also developed some fevers. Then on the night the fever broke his temperature went down to 35 degrees celcius and he had a respiration rate of 7 breaths per minute so that shook them up. That said the room was freezing at night. He has a habit of kicking his covers up and I would wake up and cover him up again, but at one point I had to fall asleep so that was when his temperature dropped.

After the first treatment his WBC number dipped to 0.8 with 26% lymphocytes, then during the 2nd treatment the WBC went to 1.3 but 87% lympocytes. I forget the 3rd day's number (analogous to the 2nd), but on the last day he had WBC of 0.6 with 56% lymphocytes. He required 3 platelet transfusions during the treatments. The bizarre thing was that his hemoglobin jumped up and down during the treatment. He started with HGB in the high 9s from a transfusion, went up to 10, went down to 8.6, jumped up to 9.7, and then fell the day after the treatment ended to 7.8 (with WBC back up to 2.8, 75% lymphocytes). I would think that the 9.7 was a mistake except that the reason I asked for his lab work was that this was the day after the fever and temperature drop, and his temp was back to normal, and I kept thinking that his skin looked so pink, as if he still had the fever. So I aksed for the labs thinking "I swear he looks like he made blood" and he did, but I can't figure out how, because his reticulyte count was still 0.010. It stresses me out of course because his HGB shouldn't jump around all over the place, and it's doing it like it did when he was first admitted to the hospital with the virus before he started to get better and then didn't. I hate this disease because there's no normal so you can't even tell if his recent plummet is normal. :-(

Thank you for reading. I also have two questions:

1) Since our stay was extended due to the fevers and allergic reaction, the PICU nurses forgot to give my son Prednisone by mouth for a day and a half after his ATG ended. The doctor restarted it afterward. That shouldn't hurt anything, should it? As far as I can tell the prednisone is for preventing serum sickness and not trying to cure the AA? Will it hurt him that he was accidently taken off of it cold turkey and then started up again?

2) My son's urine has become rust colored. I'm not sure if this is hemolysis from his PNH clone, as his bilirubin jumped to 1.7 during treatment but is trending back downward (1.2 at discharge), or if it could just be a side effect of the cyclosporine. I am just worried about him rushing through his red blood cells before his appointment on Fri. Our hemotologist didn't seem worried about it but it seems odd to me?

Also, his blood pressure has risen from the cyclosporine. They've put him on 3 magnesium tabs a day as his magnesium was falling hoping that would help. Hopefully it will.

Thank you very much for reading! Take care and good luck to everyone!
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