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Old Tue Jul 16, 2013, 09:07 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
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Quote:
Originally Posted by curlygirl View Post

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. :-(
I'm sorry that you both had such a harrowing ATG experience. While I was getting ATG, my counts were jumping all over the place. The doctors only looked at them to decide whether it was time for another transfusion. After the ATG was over, I felt great as my HGB rose to a new high before slowly dropping again. So don't be surprised if that happens as well. Also, be aware that Prednisone will cause a false increase in WBC. I can't remember if ANC is falsely affected as well.

Quote:
Originally Posted by curlygirl View Post

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?
It shouldn't matter at all.

Quote:
Originally Posted by curlygirl View Post
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?
This could also be a sign of the strain of all the drugs on his kidneys. It is important that your son drinks a lot of liquids while on cyclosporine. I am not sure how you do this with an 8 year old! I think I would give him any sugary drink that he wanted, as long as he kept drinking! Check his urine in the mornings to look for signs of PNH.

Quote:
Originally Posted by curlygirl View Post

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.
High blood pressure is one of the side effects of cyclosporine, as is low Mg. It's good that they are starting the Mg early!

Just curious...what is your son's dosage of cyclosporine and what is his weight?
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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