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Old Fri Apr 1, 2016, 09:50 PM
jsobo jsobo is offline
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Join Date: Mar 2016
Location: Cleveland, Ohio
Posts: 1
Dad having a rough day

My daughter (13) was diagnosed with AA and PNH. She does not have a sibling BM match. Today was the 4rth day of ATG/Cyclosporin treatment and it was a rough one. She has had reactions to Benadryl and they are having to push it really slow. On top of that she is having hive breakouts from the ATG and her blood pressure is a problem (high) likely from the steroids. Today she had a headache and hives and was crying and vomiting for a few hours... This is the same kid who has was stuck a tun of times to get IVs that failed (thank god for her port)... so when she cries from pain it is serious. After ct scan, platelets, a MRI and a bunch of stuff to bring her BP down she recovered and her pain level is now manageable.

I have dealt with and accepted the gravity of her situation but watching my baby suffer like that was just more than I could handle today. I had to leave her a few times to just go cry. I felt guilty for taking breaks... from other parents should I leave to cry or should I stay with her? I didn't want her to see her Dad lose it.
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