It's now been 16 months since my sons diagnosis with HSP. He was most recently hospitalized for 7 days before Christmas with bleeding in his lower intestines. This time the IV Prednisone did nothing to alleviate the purpura.
He has slipped into a deep depression with a lot of anxiety and anger I don't blame him, he's been in daily pain since Oct 06 he keeps himself covered from his neck to his feet. people comment on the purpura when they see it and he says he feels like a freak. Some people come right out and have asked him if he has AIDS which upsets him even more, he lost his uncle my brother to AIDS.
I asked for a psychiatric consult while he was in the hospital this last time. I was frightened at some of the changes in him. The Dr. placed him on an anti-depressent and an anti-anxiety med as well. Now we have to work on monthly visits to a Mental Health Clinic for follow through.
This is all so very hard on the two of us I am disabled myself since 1997 with PTSD Anxiety and I'm borderline Agoraqphobic. Caring for him has pushed me beyond my own limits and where I once kept my meds to a minimum I find I rely on them more and more just to be there for him when he needs me.
We're now working with a lawyer to help him get SS and medicaid he's been turned down twice now. I'm praying this is the answer to getting him better medical help and filling his prescriptions. It's a struggle repeated every month to get them paid for and I often let mine go so I can fill his.
pt2
I'm sorry I'm a mess at this point. We are having one problem after another. First off my son's HSP is behaving completely atypically and without Ins. we are having nothing but problems finding any consistant healtcare. The Doctor who had agreed to manage his pain relief with Vicodin is now backing off because of how long this is going on. The problem is that there is no cure only management of symptoms. He's been in the hospital so many times and all they can even do is provide relief for symptoms. On the last CT scan they found polyps on his gallbladder as well.
On top of me getting upset over his Doctors behaviour I just got a call from his new Lawyer that when they called SS for a follow-up on his last appeal SS said they had no record of receiving it. That did it, I couldn't stop crying because they said we'd have to start all over again. I don't even know if I made a copy of that appeal My son was in the hospital when I sent it in and I was already in an emotional state and may have sent it without copying it. I just don't know anymore. As my son's only caregiver I'm too often overwhelmed.
I really need to plead is there anyone out there who has experienced HSP as an adult or know anyone who has? I feel so isolated here with my son. I also have several posts on this board that are scattered I wish I had understood how to keep them all together when I started posting here.
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