mom md Posted July 16, 2009 Report Share Posted July 16, 2009 We came home last Thursday night after finishing three treatments of plasmaphoresis at Georgetown Hospital. We were admitted Monday and had the catheter placed in his femoral region under sedation. We started plasmaphoresis that evening but after a long day of not eating or drinking much we had to abort the procedure after we were 1/3 of the way through. Carter started having leg cramps becuase he was dehydrated and also had some eye swelling and wheezing. He was hydrtaed overnight and then after lunch on Tuesday we tried the plasmaphoresis again. After 20 minute he began coughing and had some eye swelling. We stopped once again and determined he was the 1% that has a severe allergic reaction to the plasma proteins. We were using albumin serum which has less proteins than FFP but he still reacted. He then was given more benadryl and started on IV steroids. He got through that treatment but they sedated him a little with oral versed just to relax him. The steroids were kept on board for the next two days as we finished the 3 courses of plasmaphoresis. Each treatment he was given versed to relax, benadryl(25mg) IV and alsong with the solumedrol(steroid) and he did fine. The steroids made him not sleep and a little cranky but he was able to tolerate it. Turns out it was a good idea we were in the PICU. The hem/onc doctor there also said he was not a good candidate for IVIG in the future because it has much more plasma protein in it and he would be even more allergic. His IGA levels were fine going into this so his reaction was a suprise. She did say that PANDAS kids were different (their immune systems were over-reactive) and they may react differently to these treatments. His ASO was 1750, fell to 950 with antibiotics and was under 100 after we were done. The first few days were a little hard as he came down from the steroids but I could still tell he was already better. The first night home he sat at the dinner table and ate sitting. This child had chorea and COULD NOT sit in a chair. He did not get up once. I was floored! This has continued every night since. He is calm, patient, respectful...and basically perfect. I slept with him Monday night to see if he moved at night. Prior to the plasma exchange he aroused 14 times an hour from movements. He did not kick me once. Once again, this was unheard of. I asked him if he felt fdifferent and he said"yes, I feel just better". I saw a millisecond of a tic or two the first three days home but have not seen one since. As Dr. Latimer said..."he will be cured. You will see results almost immediately". She was right. We chose the PE over IVIG because she felt his titers were so high it would take 2-3 treatments of IVIG and maybe 6-9 months to cure him that way. After this long road I wanted to be done and let him recover over the summer and be ready to have a good year in 2nd grade. Please let me know if anyone goes this route because I have some tips on how to time the line, 1st treatment, etc. The doctors at Georgetown were wonderful. The hem/onc doctor said she wants to team up with Latimer and study this disease. I made it a point to educate every resident I crossed paths with while I was there too. I was exhausted though after living in the PICU for three nights and dealing with a kid bouncing off the walls from the steroids. It took me longer to recover than my son! Link to comment Share on other sites More sharing options...
dee45 Posted July 16, 2009 Report Share Posted July 16, 2009 Hi, so glad your son did well--hope you continue to see improvement--thanks so much for the update. Deanna Link to comment Share on other sites More sharing options...
dcmom Posted July 16, 2009 Report Share Posted July 16, 2009 mommd- Thank you so much for your detailed post. It offers me so much hope, with a disorder that is so difficult, on a forum that has amazing parents- but not always such hope... How lucky your son is to have you! I am so glad the results are great, and wish him continued health. Please keep us posted! We will be seeing Dr Latimer in early august. If we consider pursuing ivig, or pex, I will email you for your thoughts... Did Carter do a steroid burst at all? Best, Eileen Link to comment Share on other sites More sharing options...
mom md Posted July 16, 2009 Author Report Share Posted July 16, 2009 No. The year before he was having issues and at that time we were trying to figure out if it was ADHD, restless leg syndrome, etc and he had two big sinsitus infections that were treated with Augmentin and steroids. Both times I told his teacher to put her seat belt on because he would be wild on the steroids. Both times she told me it had the opposite effect and he was more focused and less impulsive at school. Dr. Latimer and I agreed that that was a steroid burst we just did not know it at the time. Also, I think she though the PEX would solve the problem. mommd- Thank you so much for your detailed post. It offers me so much hope, with a disorder that is so difficult, on a forum that has amazing parents- but not always such hope... How lucky your son is to have you! I am so glad the results are great, and wish him continued health. Please keep us posted! We will be seeing Dr Latimer in early august. If we consider pursuing ivig, or pex, I will email you for your thoughts... Did Carter do a steroid burst at all? Best, Eileen Link to comment Share on other sites More sharing options...
Suzan Posted July 16, 2009 Report Share Posted July 16, 2009 Wow, really amazing, scary, wonderful. I am so glad all is well and you are home. Please keep us posted. Susan Link to comment Share on other sites More sharing options...
michele Posted July 16, 2009 Report Share Posted July 16, 2009 Hi. I have been waiting to hear from you. I was wondering how you had made out. I am glad things worked out then. I was a bit frightened by the PEX process but am glad he held up fine. What do you think now looking back, is this the best way to go for PANDAS or SC? We have never done seroids, IVIG or PEX but are desperate at this point for something. This has been the summer from ###### since he was sick June 5th. Andrew's symptoms have never remitted yet. The tics and eye rolling is worse, can't sit still, vocal squeals and shouting out bad words, oppositional, angry, and defiant. The bowel issues have gone from soiling to diareah, to constipation and bleeding with his now helping the BM out. His compulsions are through the roof. The anxiety and eyes rolling sideways and bottom pants pulling every second. I just pray Dr. Latimer can guide us since the meds we are using have not helped him yet. We added clonidine and are on Abilify and Celexa too. Tomorrow is another psychiatrist appointment. We can't seem to nail this yet. He is always ahead of us and we are tryin to play catch up. I can't even imagine startin school in his state. What exactly are you giving Carter now? How is he currently doing? I am so happy for you. Thanks for the info. Michele We came home last Thursday night after finishing three treatments of plasmaphoresis at Georgetown Hospital. We were admitted Monday and had the catheter placed in his femoral region under sedation. We started plasmaphoresis that evening but after a long day of not eating or drinking much we had to abort the procedure after we were 1/3 of the way through. Carter started having leg cramps becuase he was dehydrated and also had some eye swelling and wheezing. He was hydrtaed overnight and then after lunch on Tuesday we tried the plasmaphoresis again. After 20 minute he began coughing and had some eye swelling. We stopped once again and determined he was the 1% that has a severe allergic reaction to the plasma proteins. We were using albumin serum which has less proteins than FFP but he still reacted. He then was given more benadryl and started on IV steroids. He got through that treatment but they sedated him a little with oral versed just to relax him. The steroids were kept on board for the next two days as we finished the 3 courses of plasmaphoresis. Each treatment he was given versed to relax, benadryl(25mg) IV and alsong with the solumedrol(steroid) and he did fine. The steroids made him not sleep and a little cranky but he was able to tolerate it. Turns out it was a good idea we were in the PICU. The hem/onc doctor there also said he was not a good candidate for IVIG in the future because it has much more plasma protein in it and he would be even more allergic. His IGA levels were fine going into this so his reaction was a suprise. She did say that PANDAS kids were different (their immune systems were over-reactive) and they may react differently to these treatments. His ASO was 1750, fell to 950 with antibiotics and was under 100 after we were done. The first few days were a little hard as he came down from the steroids but I could still tell he was already better. The first night home he sat at the dinner table and ate sitting. This child had chorea and COULD NOT sit in a chair. He did not get up once. I was floored! This has continued every night since. He is calm, patient, respectful...and basically perfect. I slept with him Monday night to see if he moved at night. Prior to the plasma exchange he aroused 14 times an hour from movements. He did not kick me once. Once again, this was unheard of. I asked him if he felt fdifferent and he said"yes, I feel just better". I saw a millisecond of a tic or two the first three days home but have not seen one since. As Dr. Latimer said..."he will be cured. You will see results almost immediately". She was right.We chose the PE over IVIG because she felt his titers were so high it would take 2-3 treatments of IVIG and maybe 6-9 months to cure him that way. After this long road I wanted to be done and let him recover over the summer and be ready to have a good year in 2nd grade. Please let me know if anyone goes this route because I have some tips on how to time the line, 1st treatment, etc. The doctors at Georgetown were wonderful. The hem/onc doctor said she wants to team up with Latimer and study this disease. I made it a point to educate every resident I crossed paths with while I was there too. I was exhausted though after living in the PICU for three nights and dealing with a kid bouncing off the walls from the steroids. It took me longer to recover than my son! Link to comment Share on other sites More sharing options...
T_Mom Posted July 16, 2009 Report Share Posted July 16, 2009 MomMD-- Your post brought tears to my eyes--so thankful for you. Please keep us updated, when you have time-- T. Link to comment Share on other sites More sharing options...
P_Mom Posted July 16, 2009 Report Share Posted July 16, 2009 What great news!! So gald it all worked out and praying for continued improvement!! We are seeing Dr. Latimer, too. May I ask...did insurance cover this? Thanks! Kelly Link to comment Share on other sites More sharing options...
mom md Posted July 16, 2009 Author Report Share Posted July 16, 2009 Still waiting to hear. Dr. Latimer seemed to think it would not be a problem. The hem/onc doctor's office called today and said they were trying to get in touch with Latimer's office so they could code it the best way possible so it would get paid for. Usually with hospital admissions things get pre-authorized but with Latimer being out I don't know if it got done properly. I will keep you posted.... Claire What great news!! So gald it all worked out and praying for continued improvement!! We are seeing Dr. Latimer, too. May I ask...did insurance cover this? Thanks! Kelly Link to comment Share on other sites More sharing options...
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