mom md Posted October 30, 2009 Report Posted October 30, 2009 Just found out Carter's cam kinase was 99. Normal is 98. Pre-PEX it was 201 which was in the SC range. We were only 3 months post-tx when we drewit. It may have gotten back to normal so quick because of the IV steroids we had due to his allergic reactiion to FFP. We are still waiting for his antibody titers, but it means his brain is healing!!!!!! I am not sure what the relapse we had last week means, but he did respond to steroids within 2-3 days.
Char Posted October 30, 2009 Report Posted October 30, 2009 mom md, I am so happy for you and your son. That is awesome to hear your sons Cam Kinase score was back in the normal range. Thanks for sharing your good news with us!! Char..
peglem Posted October 30, 2009 Report Posted October 30, 2009 Just found out Carter's cam kinase was 99. Normal is 98. Pre-PEX it was 201 which was in the SC range. We were only 3 months post-tx when we drewit. It may have gotten back to normal so quick because of the IV steroids we had due to his allergic reactiion to FFP. We are still waiting for his antibody titers, but it means his brain is healing!!!!!!I am not sure what the relapse we had last week means, but he did respond to steroids within 2-3 days. Woweeee!!! That sounds fab!
dcmom Posted October 31, 2009 Report Posted October 31, 2009 MomMD- Just wanted to bump this up to the top to make sure everyone sees the great news! BTW, I have been thinking lately, that if these kids do have some type of super strep (maybe that is why two years of high dose augmentin finally helped Sammy), why couldn't we treat with IV antibiotics? Maybe that should be added to the pex protocol?
FallingApart Posted October 31, 2009 Report Posted October 31, 2009 Mom MD, so glad to hear this. I have thought about you a ton this week! We go for PEX next week and your story scared me so much! Is your son back to baseline after last week's setback? I've been off the boards most of this week, so forgive me if this has been posted already. I'm so hopeful for you and all of our families!!!
bronxmom2 Posted October 31, 2009 Report Posted October 31, 2009 That is such great news! I think IV steroids should possibly be part of PEX protocol. I have also wondered why no one ever tries IV antibiotics. Anyway I am so glad to hear you guys are doing better!
memom Posted October 31, 2009 Report Posted October 31, 2009 Nice to hear of your success. It helps to keep us all optimistic. I hope for you and your family continued smooth waters. Ellie
mom md Posted October 31, 2009 Author Report Posted October 31, 2009 WE are meeting with a pediatric infecious disease doctor on Monday and I will ask that question. I still think though the issue is the immune system more than an infectious one. My son seems to flare with any big physical stress. It does not need to be a strep infection. I am going ready though on Monday to ask a lot of questions about antibiotic options.
Kayanne Posted October 31, 2009 Report Posted October 31, 2009 Great News! Thanks for letting us know. I have been thinking about you guys...My PANDAS DD6 started with flu symptom Wed night...I've been watching so closely to see if any behaviors resurface...does anyone know how long after an illness prednisone can be given? does it only start to supress the immune system after a month? My concern is that if I give pred too soon after an illness, her body won't be able to fully recover... My husband and I keep asking each other why not add prednisone into the mix when getting IVIG and PlasmPh...wouldn't it help even more with the inflammation? But, we always figured there was some reason to be careful.
Debbie1 Posted November 1, 2009 Report Posted November 1, 2009 Wow! Such encouraging news! Thanks for posting - please continue to keep us posted! Debbie
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