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mom md

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  1. First of all, I am so sorry your family is going through this but please know your son will be better. I think the fact that he I improved on the azith and then relapsed just helps support the thought that this is autoimmune. We had a very similar story although my son had it for much longer before we connected the dots. We did plasmaphoresis with a phenomenal response and then relapsed 4 months later when his immune system was challenged. He then had IVIg and he was brought back to normal. He relapsed 8 months later and had another IVIg. Each relapse has been less acute and each treatment he has responded quicker.he was diagnosed in January of 2009 and he is now thriving. He may relapse again but I now no longer fear it like I did because his response to IVIg has been so dramatic. Azith is a immune modulator which is why they improve on it, but IVIg is a sledgehammer to the immune system. I would consider steroids also if you want to see if he will respond to the IVIg. We did steroids for a period until we could arrange the IVIg. It was a bandaid but kept us able to function until we could move forward with the IVIg. The waxing and waning on azith just supports the diagnosis. Please do jot see it as a failure.
  2. Two years post PEX and post 4 rounds of IVIG, son is 10 and doing great. He is still on azith 250 qd. Doctor has him take it for immune modulating factor and some step protection (although other antibiotics like penicillin would probably work better to prevent strep). azith is used a lot in cystic fibrosis kids long term for immune modulation as well. Plan to keep him on it or something else till he is an adult.
  3. Yes, it works! My son was a very bad case and he is now completely asymptomatic. He has been without symptoms for 8 months now. My son had PANDAS for several years before we knew what he had it and was a more difficult case to treat. He did require a few treatments and did relapse once along the way but IVIG has done wonders. He is thriving in 3rd grade now. I think the number of treatments a child needs may be somewhat related to how long they have had it. I am not sure it is a "cure" because he may relapse again sometime, but I know what to do and what works. I also think it is "retraining" his immune system. When he has relapsed in the past his symptoms are much milder. It is very safe too, just expensive. We premediate with benadryl, zantac, and steroids and make sure he is very hydrated and have not had side effects.
  4. We had one after one treatment when he went in slightly dehydrated. The neurologist said it was a migraine after he had it for 4 days and it did not go away. He took Amerge and it went away. He always does pre-treatment steroids (40 mg for 2 days pre, 40 mg for each day of transfusion, then 40 mg post x 2 days...then quick taper). Also, always go in VERY well-hydrated. He just had his 4th IVIG. No symptoms at all for 6 months. This is just to prevent a relapse.
  5. Our pediatric infectious disease doctor said that azith was a great immune modulator but a poor prophylactic one to prevent strep. She recommended switching to the rheumatic protocol long term when his immune system finally calms down (we are doing really well 6 months post 3rd IVIG but plan to do two more this year to keep him here). It has been a year but I think she recommended a cephalosporin if he has been exposed or gets strep because there are very few resistant strains to this group.
  6. My son's IgE levels were 280 but he also was allergic to 95% of the things they skin tested him for. His allergist said this was more a reflection of his immune system being in overdrive/dysfunction than true allergies. He also has no huge allergy symptoms or food allergies.
  7. Yes, the choreiform movements can be unilateral.
  8. Thank you Buster for all of your hard work. When I am trying to educate a new family or physician willing to treat I always include your hard work in what I send them. I am finding now that a lot of the first line doctors like pediatricians, school nurses, psychologists, etc. have heard of it just have never seen it and don't know what to do. In the last 2 years since I have been on the forum there has been truly unbelievable progress. The scary thing though is I feel new cases are popping up everywhere.
  9. I have no data to base this on but I do think doing PEX pre-IVIG may have helped us. We removed most of the antibodies with PEX and then when he relapsed 4 months later the IVIG was able to target a much lower antibody load. Dr. L had said it would probably take 6-9 months and several IVIG treatment to accomplish what PEX did in 4 days. I do think our response to IVIG has been better and quicker than several other patients. I don't know if we were purely strep induced and did not have any other co-infections or if the antibodies we were targeting had not been around as long and therefore easier to get to. I know the process was pretty drastic but we are in a good place now. We have come so far but I know that even if we step backwards, IVIG has been successful and pulled him back to baseline within a week twice. Our neurologist here thinks this is like all other chronic autoimmune diseases...he will always be susceptible to flares. Our immunologist thinks that if we can retrain his immune system he may improve and be cured after puberty. I hope she is right!
  10. We are now 5 months without any symptoms post-IVIG and doing well. He is completely symptom free. I still check in periodically but honestly am trying to be "normal" and still heal the damage done. I talk to 1-2 new families a week and try to point them to the right doctors and info. I always mention this forum which was so helpful to our family. We are planning to do IVIG again in the next month to see if we can get a full year without symptoms. My son had it for much longer than some and that may be why we have relapsed post treatment in the past. Because this is an autoimmune disease it will always have the possibility to flare. If I have learned one thing, it does not play by the rules. For his case though...he always responds to steroids, IVIG, and plasmaphoresis. Each time he gets IVIG (he has had three) he goes longer and longer without a relapse.
  11. A high school friend called me tonight and her son most likely has PANDAS (sounds like a text book case). Her school nurse suggested it which I thought was unbelievable...the word is spreading. Her son had OCD, anxiety, tics, panic attacks, and now a fear of throwing up which all developed after a sterp infection. Sounds like some minor symptoms may have been there before this latest exacerbation. She lives in Atlanta. Does anyone know a doctor in that area? Thanks
  12. Interesting Recent Research: Human and Mouse Studies Sharpen Focus on Cause of Celiac Disease ScienceDaily (Feb. 10, 2011) — Blocking a factor that can activate the human immune response against intestinal bacteria or certain foods could prevent the development of celiac disease in those most at risk, researchers report in the journal Nature The study, to be published early online Feb. 9, points to two chemical signals -- interleukin 15 and retinoic acid, a derivative of vitamin A -- as triggers for the inflammatory response to gluten, a protein found in many grains that causes celiac disease. "We found that having elevated levels of IL-15 in the gut could initiate all the early stages of celiac disease in those who were genetically susceptible, and that blocking IL-15 could prevent the disease in our mouse model," said Bana Jabri, MD, PhD, associate professor of medicine and pathology, co-director of the Digestive Disease Research Core Center and a member of the Celiac Disease Center and Comprehensive Cancer Center at the University of Chicago. "It also demonstrated that in the treatment of inflammatory intestinal diseases, vitamin A and its retinoic acid metabolites are likely to do more harm than good," she said. "In a stressed intestinal environment," the authors note, "retinoic acid, which was thought to lessen inflammation in the intestine, acted as an adjuvant that promoted rather than prevented inflammatory cellular and humoral responses to fed antigen." This pro-inflammatory effect in a stressed intestine may also help explain the connections between Accutane--a vitamin A metabolite given for the treatment of severe acne--and the onset of inflammatory bowel disease. Celiac disease is a digestive disorder triggered by the protein gluten, found in wheat, barley and rye. The disease affects about one out of 100 people. Gluten can trigger an autoimmune reaction in the intestines of genetically susceptible people. This prevents the proper absorption of food and nutrients, and causes a variety of gastrointestinal and extra-intestinal symptoms. The current treatment for celiac disease is a gluten-free diet. However, many patients, in particular adults, improve only partially on a gluten-free-diet. This diet is difficult to follow, costly and inconvenient. There is a growing interest in finding alternative therapies, such as a vaccine that could prevent disease development in genetically susceptible individuals. Celiac disease is also associated with autoimmune disorders such as type-1 diabetes and autoimmune thyroiditis. Understanding celiac disease may speed the development of new therapies for these autoimmune disorders. For this study, Jabri and colleagues combined insights and data from celiac disease patients, who had been cared for at the University of Chicago's Celiac Disease Center, with experiments using a mouse model of the disease, developed in her lab. Moving back and forth between "human data, where we develop our ideas, and mouse experiments, where we test them," was extremely helpful, said Jabri. "In turn, the mouse model gave us insights into the human disease." They knew that many patients with this disease had high levels of Interleukin 15 in their intestines. When the researchers increased the levels of this signaling molecule in mouse intestine, the mice developed all the early symptoms of celiac disease. Adding retinoic acid to the mix only made the symptoms worse. When they blocked IL-15, however, the diseased mice reverted to normal, and were once again able to tolerate gluten. Clinical trials of medications that block IL-15 are already underway for patients with rheumatoid arthritis, another inflammatory disorder. Early results, have been encouraging. Blocking IL-15 or IL-15 signaling may be a way to restore oral tolerance to gluten and allow effective responses to vaccines aiming at preventing development of celiac disease, Jabri said. This study is the first to identify an abnormal pathway leading to loss of tolerance to dietary antigens. It suggests that a "dysregulated intestinal environment may be the underlying cause for food allergies," Jabri said. What type of dyregulation is responsible for food allergies, such as to peanuts, is not yet known. Although the IL-15 plus retinoic acid combination leads to inflammation and tissue damage in those at risk for celiac disease, the authors suggest that for those who, for genetic reasons, are less susceptible, the same combination could help enhance vaccines against several bacterial infections that cause diarrheal diseases. Children in developing countries often lack vitamin A. But by vaccinating them with selected bacterial proteins plus vitamin A, instead of using live viruses, they may be able to reduce the risks and increase the protective response. The Digestive Disease Research Core Center at the University of Chicago, the Crohn's and Colitis Foundation, and the National Institutes of Health funded this research. Additional authors include R.W. DePaolo, V. Abadie, F. Tang, H. Felhner-Peach, W. Wang, C. Semrad, S. Kupfer, and S. Guandalini of the University of Chicago; J.A. Hall and Y. Belkaid of the NIAID; E.V. Marietta and J.A. Murray of the Mayo Clinic College of Medicine; D.D. Kasarda of the U.S. Department of Agriculture; AND T.A. Waldman of the National Cancer
  13. We did PEX July of 2009. We had immediate results with complete resolution for 4 months. We had it two weeks after Latimer's husband passed away. I thought we would have to cancel but Georgetown let us come anyway. I did call the pediatric intensivist at the hospital where I work and he said he would do it if he had a recommendation from Latimer. He said the red cross comes every Friday to do PEX on the severe sickle cell kids and they could get them to do it Fri and over the weekend. We never did it but it was nice to hear it was an option and that the red cross can come do it at a hospital if the hospital does not have a team. We did relapse 4 months later after sickness came through the household but then had IVIG and were back to baseline in 7-10 days. I think our turning back the pages was not as severe because we did PEX before IVIG. I have nothing to base that on but that is just my theory. We are now doing IVIG every 4-5 months for a year to see what happens. Each time our symptoms are gone within 4-5 days and return 4-5 months later. Each time they return though they are less. It is like the body is loosing it's ability to attck like it did before.
  14. We did high dose IVIG at home without issues. The cost of doing it at the infusion ceneter was $15,000 and the cost at home was $6700 including supplies and nursing care. I looked into all options because I was ready to pay out of pocket. (This was our third infusion and BCBS denied us after PEX and two IVIGs which all had worked). The difference was the hospital "facility" fee. We did give pre-treatment oral steroids and a 5 day taper, benadryl, pepcid, and an extra bag of 500cc of fluid post-tx. We had no isues. After we were denied I had all our treating docs write letters and then had one personally call the medical director of BCBS. She said all denial came across her desk and she had never recieved any medical records or letters on our child. That was BS. The info was sent multiple times. Finally a phone call and refaxing everything got us approvad. It was exhausting. All insurance plans are not equal. Even within a company like Cigna. We now have Cigna but our IVIG decisions are made through Walgreens because that is the pharmacy the hospital I work for contracts with. It will cost us a flat rate of $70.00 whenever we do it. We can have it whenever at no cap. Unbelievable. The hospital buys it in bulk so it is cheap. We are planning to do it every 4 months this year to stay where we are. We are doing great.
  15. I consider us an IVIG success story even though we have had three treatments this year. Each treatment has brought us back to normal and each time we have flared post-IVIG it has been with milder and milder symtpoms. We have had 2gm/kg over two days in January and then again in March just to be safe. We went all the way to August without any symptoms. My son is thriving in school and with friends. Within 4-5 days of treatment he is always much better. We have gone from severe chorea to down the spectrum and last time just anxiety and OCD. It has saved our life. We will plan to do it at home again every 4 months for a year and see if we can avoid symptoms all together. Some may say it is not a success because we have had to do it again but I can tell you it has worked for us. My son has started playing the guitar, spending the night out, rock climbing, and went to spend the night camp this past year. Our bad days have been few and tolerable. I am still not sure exactly what our enemy is, but IVIG has worked for us.
  16. We have seen a great response to IVIG. We had our first treatment in January at 2gm/kg, and had 7-10 days of exacerbation and then a calmness I had not seen in a while. At week 5 we saw a flare but it only lasted 1/2 a day. We did IVIG at the same dose 8 weeks later. After that one we saw little or no change, but he was already about 97%. We went 5 months without symptoms and then started to flare again. Due to insurance issues we waited 2 months to treat and then did the 2gm/kg dose again. We once again had some stirring of the pot and turning back the pages but it was mild. After 4-5 days his significant issues were almost gone. Today he said he only had one PANDAS thing he was doing now which was is so mild I did not even notice. I have to say he is 98-99%. After each treatment we seem to be moving closer and closer to our goal. We are planning to treat him at the 2gm/kg dose every 3-4 months for the next year. Our insurance has changed and getting it will not be an issue. It has saved my child.
  17. Yes, I agree with this thought. I have always felt our disease had more of an autoimmune component than an infectious one. He was "cured" immediately with PEX. When his immune system was challenged with H1N1 he started making antobodies and flared. We have responded very well and quickly to steroids and IVIG. His ANA was also 1:640 when he was diagnosed.
  18. We went to the park today to take our holiday picture. My son (3 weeks out from IVIG) turned to me and said..."this is fun!" Never have I ever heard him say that taking family pictures was fun. In fact, last year in a flare when we took them he was in a rage with a dark look in his eyes. It was actually a very pleasurable experience...and I have proof on film!
  19. I am so happy for your boys. I know you feel like you just ran a marathon (or two!) I iknow you are relieved but you should be very proud of yourself. You are truly a warrior. We are three weeks out from IVIG and doing great. We are actually having a spend the night friend tonight! We still have some healing bumps but I know we are moving in the right direction. All my thoughts and prayers!
  20. When my son was diagnosed his ASO was 1750 and his AntiDnaseB was 1950. After amoxicillin for 10 days and azith for three months his ASO was 950 and AntiDnaseB 1320. Then his anitDnase went up to 1360. PEX cured everything instantly for us. Four months after PEX (his titers were <100 when we left) his ASO was 500 and the other was 700. We did high dose IVIG (2gm/kg over 2 days). Three months after IVIG his aso was 378 and aniDnaseB around 500. He was doing about 95% then. Pre-third IVIG his ASO was stablr at 378 and I am waiting on the antiDnaseb titer. Interesting too that prior to PEX his ANA was 1:640. We have also not had strep to our knowledge since 2006.
  21. I know the importance of hearing positive news so I wanted to update on our son who is 9. We think he had PANDAS 5-6 years before we connected the dots. His symptoms were very waxing and waning and it is hard to point your finger on the day it all started. He had it all. Hyperactivity, poor impulse control, OCD, anxiety, sleep issues, rages, etc. and finally tics and chorea. We were diagnosed in Feburary of 2009. We had PEX at Georgetown due to the significant chorea and left cured. Four months later we relapsed after he was exposed to H1N1. He always responded to steroids but we were unable to wean him without symptoms returning so we did IVIG in Jan of 2010. We had a bumpy 10 days and then he was almost back to baseline. He did IVIG in March 2010 just to keep him there. He began with mild symptoms in August and after fighting insurance (and finally winning!) he did IVIG 10 days ago again at home. Prior to this treatment he had severe anxiety and OCD. His symptoms were gone in 2-4 days. Unbelieveable to watch every time I see it. Prior to it he would touch things 5-25 times and be unable to walk without turning because he had a "string" attached to his back. The string was almost gone 4-5 days after treatment. My friend came over yesterday and said his eyes looked clearer...as if the "fog" was gone. I think we have a pretty classic case but also one that was there for so long that retraining the immune cells not to make antibodies may take a while. This has definitely turned into a marathon and is our normal. Looking back though over the past year and a half though he has done excellent in school, he has made great friends, plays sports, and basically looks like every other 9 year old boy. I still suffer from PTSD, but at least I know my enemy and what works. Each year is getting better and each relapse is less severe. I am also doing all I can to slowly help spread the word among the medical community. We are having a grand rounds next month at the teaching hospital here on the disease. I speak to everyone I can and preface it by..."you are never going to believe this story..."
  22. I am in Charlotte and have a group of doctors that are all working together to treat my son. We live in Charlotte. He was diagnosed almost 2 years ago and is doing well now. There are several other parents in this area as well.
  23. It is a visiting attending that I don't know. I am going to figure out who she is and call her before she comes. I will make sure she is not giving a "PANDAS does not exist speech and if she is I will plan to raise my hand an tell my story." We are getting IVIG tomoorw and Friday at home. My son is flaring now but if he responds like he has before, he should be back to baseline well before the 24th...but oh do I have a story I could tell!
  24. My immunologist e-mailed me today the grand rounds schedule for the residency here in Charlotte. In November they are having a grand rounds for the doctors and residents on "Tics, OCD, and PANDAS". Needless to say I will go and hear what they say. My immunologist said she would go also and spread the word among her colleagues.
  25. Thanks. I did not list Nelson only because I only listed the Concord neuro I know. The boys are holding steady but Carter still needs IVIG. We are waiting to hear back. Dr. Corbier called and I have not heard. I am ready to just get it done though and continue appealing.

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