Hey there, so sorry I am just responding to your response to my post below. First off, can I just say I read your post and thought that you are AMAZING. I have seriously been through less than 1/100th of what you have been through and the fact that you are still here, surviving, and a good mother is amazing! And a mom to more than two kids two, wow!
I cannot believe everything your poor son has been through. He is beautiful and it hurts my heart to read about everything he has had to endure. What an absolute fighter. I like to think that God has great things in store for my daughter and reading about your son I already see he must be doing great things.
As for my daughter's treatments and disorder, there isn't really any explanation as to why she has such an extreme case. Such is the joy in an "idiopathic" disease, right? We had her platelets checked yesterday and she had a GREAT response to the IVIG/high dose pulsed steroids combo. We will see how long it lasts, hopefully at least a few weeks. I am having some difficulty with her medical team though. One doctor things that even with her good response we should move forward with a low dose chemo (considered a secondary treatment) in a steroid sparing effort. Her other doctor is the opposite and thinks we should stick with what we are doing in terms of primary treatments (ivig, steroids) for now. So not only do I have to worry about my daughter but I am not getting a clear cut answer either. They are consulting with other hematology clinics so hopefully there will be some consensus here soon.
As for her protection, luckily she is not mobile just yet, thank God! However that is definitely something I will have to worry about. One time when her count was really low she toppled over, bumped her head on a toy and had a huge purple bruise. She also will just bruise super easily from holding her, her bumping toys, etc. I hate seeing her covered in bruises when she is so low. We have tried to be really cautious with her immune system as well but have loosened up a bit compared to the first few months where we basically kept her sequestered! What did you do with your son?
Lastly, we are very fortunate in that my husband works for a pharmaceutical company and we have great medical insurance. We definitely met our deductible early on and have actually met the co-insurance so right now the only thing we have to pay for the rest of the year are co-pays.
Thanks for telling me so much about your son. I think you both must be very special!