PowPow Posted August 4, 2011 Report Posted August 4, 2011 I really hesitated, seriously, seriously hesitated to post this so soon. However, I feel like there may be some parents out there in latitudes-land who are weighing their treatment options. I know of at least one who was offered pex & too nervous (understandably) to do it. I don't want to say too much yet (it has only been 13 days) but pex did a complete miracle on my child. an utter, complete miracle. she went from.... not speaking or looking at us, hiding in a room under a blanket, (and has been this way for many, many months) to... eating lunch with us, talking to us like everything is normal, changing the littlest's diaper, hugging grandparents, clothes shopping, it goes on... There is much ground to cover still & praying there is no regression. I just felt a very need, almost instinctive in a way, to share this. Maybe someone out there is unsure of their next step tonight. I hope this helps someone.
Kiera Posted August 4, 2011 Report Posted August 4, 2011 Great news! Just wondering why some do PEX as opposed to IVIG? What's the reasoning as to which way to go? Thanks.
PowPow Posted August 4, 2011 Author Report Posted August 4, 2011 She had IVIG in Mid May-- did not really see any change. We may be doing another IVIG in a few weeks- do not know yet. Does anyone know why pex vs. IVIG? I suppose: 1. availability of plasmapheresis-- there are not many facilities that do it this way (central line, 3 consecutive exchanges) and not many that do it for PANDAS (as far as I know, any ways) 2. Insurance or ability to pay for it yourself (hate to say it, but it must play in to it.. right?) 3. severity, I suppose. My children ( 2 have had pex) were both severely affected, nonfunctioning, even at the most basic levels from PANDAS. The child I am writing about now-- was inpatient psych worthy, if you get my drift I feel like we are living a dream right now. My daughter is here- she was just locked inside that PANDAS nightmare-- I still can't believe it!
Mary M Posted August 4, 2011 Report Posted August 4, 2011 Thank you for sharing. My dd has had 2 HD IVIgs and antiDNAse B is still elevated so PEX may be our next route. It is always such a relief to read of someone's success after any treatment. May this wonderful health continue. Mary from Michigan
butterflymom Posted August 4, 2011 Report Posted August 4, 2011 (edited) = Edited October 8, 2015 by tampicc
airial95 Posted August 4, 2011 Report Posted August 4, 2011 Keeping you in our thoughts and prayers for a continued recovery!!!
JJMom39 Posted August 4, 2011 Report Posted August 4, 2011 I am so glad you shared your experience since having PEX. It is wonderful to hear stories of healing. I often think that if my ds needs more intense treatment I would want to opt for PEX so knowing that you are having great results is very encouraging.
ptcgirl Posted August 4, 2011 Report Posted August 4, 2011 What wonderful news for your family! Thank you for sharing your story of hope. It helps me to think that maybe there really is light at the end of the tunnel. Enjoy your daughter!!!
momaine Posted August 4, 2011 Report Posted August 4, 2011 I tear up every time I read something like this. I am so happy for you and wish your dd continued recovery! yay!
T_Mom Posted August 5, 2011 Report Posted August 5, 2011 I am smiling from ear to ear -- thankful prayers.
Joan Pandas Mom Posted August 9, 2011 Report Posted August 9, 2011 Tears of joy here too! We are so happy for you and your family. God Bless.
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