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Everything posted by kimballot

  1. Hello fellow PANS/ PANDAS parents. Some old-time folks may recognize my name. Others are likely unaware of the struggles my family has endured for the last decade. I found this forum in 2010 after a H1N1 hit our family in the fall of 2009 and my son was hit with yet another PANS exacerbation. He was 12 years old at the time and had struggled with chronic sinusitis and Pans for much of his life, though the preceding 5 years had been relatively quiet as a result of a 2007 tonsillectomy. The H1N1 set off a major immune response that led us to Dr. B in CT who found a large muscle in his et
  2. My son is 20 years old now and has struggled with PANS for most of his life due to immune deficiency and chronic sinusitis. Recently we began seeing a local immunologist who does lots of work with metabolic disorders, believing that mitochondrial dysfunction is the root of much immune dysfunction since we need mitochondria to form inmmune cells properly. He did extensive blood work, followed by a muscle biopsy, and then genetic testing. All tests found abnormalities that eventually led to discovering a genetic mutation in a gene that helps mitochondria to function properly. This really hel
  3. My son uses saccharomyces boulardii as a probiotic as it can be taken with antibiotics. When he was younger, yeast was more of a problem and we frequently used diflucan as an anti fungal. (I don't think you can do diflucan with saaccharomyces bollards). We also used acidophilus but always had him take it 2 hours apart from antibiotics. Best wishes.
  4. Yes - We have done igenex 3 times now and never any lyme. Igenex was "indeterminate" for bartonella, but my son developed bart stretch marks about 3 years ago, so we started treating for Bart. Just had Galaxy lab bart test last August and it was the first test to come back positive for Bart!! Just had him retested today - hoping to see the numbers dropping. This disease truly is like peeling the layers of an onion. He has had a crummy immune system since birth with chronic sinusitis and every cold and flu possible. In 2010 his exacerbation started after H1N1 virus but as we investigat
  5. So nice to see you on the forum again too! You were always a few steps ahead of us in recovery, and were a guiding light! you talk about "now the your son is home for the holidays", so I am assuming he is away at school or living away from home now? So very glad for you and him! I remember that he did very well in High School and really has a good head on his shoulders!
  6. Fully agree with Mama to Alex. Yes - make an appointment with the PANDAS doctor. Also, Galaxy labs has a new bartonella test that may be more sensitive than igenex - but igenex is best for the other lyme. Good luck!
  7. Hello old friends and new acquaintances- It is hard for me to believe that I've not posted on this forum since 2014. Our story is long and complex and new folks who are looking to follow a story that was very difficult for a long period of time but is continuing to improve can look up my old topics. There was a time when I knew every post on this forum and checked in hourly for new information. DS has had PANDAS for most of his life, with a lengthy history of chronic sinusitis and two large flares - one at age 7 and one at age 13. The one at age 13 was really devastating and he spen
  8. Sent you a PM and am wishing you all the best. Keep fighting. The right combination of meds are out there.
  9. I really believe he had multiple pieces that led to his immune cascade. He has had chronic sinusitis since birth, was deficient in pneumococcal titers (contributing to the sinusitis), had a sinus mucocele that had infected his ethmoid sinus for several years before it was detected by Dr. B in 2010 and was then removed, probably had bartonella brewing and unable to fight it off for some time due to his immune deficiency, and finally had H1N1 in the fall of 2009 - which led to a marked deterioration in school performance and led us to start searching for answers in January of 2010. My dear fri
  10. I just wanted to share with you that we just got back from an appt with Dr. B for DS17, who has been seeing Dr. B for 4 years now and has been receiving IVIG for over 3 years. Some of you know the very dark times we have been through - which is very similar to what many of you have been through. Over the last year we have increased the frequency of his IVIG and that seemed to help him a bit, but he was still having extreme fatigue, brain fog, and irritability in general and then even more symptoms just before and just after IVIG. Most recently, Dr. B changed his abx to doxy an
  11. Thanks!!!! Appreciate this a lot. Does it make any difference that I had 4 infusions done within a weeks time!????? Yea all my fatigue in mental so something bad is happening in my brain. I did listen to the brain on fire audiobook 2 years ago and that's how I came to know Dr. C and Dr. N - I definitely felt like they could help me after reading their research papers.........which was really hard, reading crashes me mentally, well everything does. I would think 4 infusions in one week would be difficult but I am not sure if they did 2 grams per kilo over 4 days or 4 grams per kilo over 4
  12. If he is adult sized and he did the IVIG for about 6 hours per day for 2 days then it was most likely high dose - either 1.5 or 2 g per kilo. If he did it of half that time then it may have been low dose
  13. IVIG results are different for everyone. It is great that your son did not have severe side effects - especially without prednisone. It is better to not use prednisone if you can avoid it. High dose (1.5-2grams/kilo) is usually recommended for kids with PANS as it is anti inflammatory and stops the autoimmune process. Low dose (usually .5- .75 gm/kilo) is usually used for kids who are immune deficient but not autoimmune as it supplements the low antibodies, but can also cause some inflammation -which we want to avoid in PANS. Results of high dose IVIG can take several weeks to see.
  14. ophelia - I am so sorry you are experiencing this. My son, too, got much worse after his first IVIG 3 years ago. He has some mild immune deficiencies as well. We continued IVIG, continued looking for infections, continued to tweak his antibiotic, continued to change his IVIG schedule. For about 2 years I thought he would never crawl out of that hole and I started to plan my life to have him dependent on me forever. But he is crawling out of the hole. He is in a good place now. He is able to go to school and do some social activities like going out to dinner a couple times a week.
  15. My understanding is that in SOME cases IgA deficiency is actually caused by the body destroying its own IgA through anti IgA antibodies. Most IVIG contains a small amount of IgA. If a person with IgA deficiency gets IVIG with some IgA in it - there is a risk of anaphylactic shock. There are some IVIG preparations that are made with extremely small amounts of IgA and those are generally used for people with extreme IgA deficiency just to be safe. Here is so me info from http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/selective-iga-deficiency/ Patie
  16. Cobbie Mommy - I am sorry but I don't recall your son's history. Bear with me if you've already done this. 1. Does your son have any immune deficiencies that lead to sinusitis - Low IgA is particularly problematic for sinuses as is low IgG - especially if the s. pneumonae titers are below protective levels. if those have not been checked yet - get them checked. 2. If the problem is anatomical (deviated septum), then you want to find out how to keep things flowing and draining while you wait for the sinus surgery. Is there a nasal rinse or netti pot that can be used to keep th
  17. I think your first line really sum it up - there are wide differences in response to IVIG for a variety of reasons. Therefore, what is "latest and greatest" will depend on your child's needs and on his/ her reaction. From my observations, it seems that some kids do very well with one IVIG to stop the autoimmune process with PANS. This seems to be best when the infection has already been eradicated. ​Some kids have underlying infections that were not eradicated before starting IVIG - and those kids seem to need repeat IVIGs while treating the infections with antibiotics. Then t
  18. If your DS has a history of ENT problems you might want to consider Dr. B (if you can get to Connecticut) as he is an immunologist and really looks for infection and for immune dysfunction. It is quite possible that your son has some mild immune deficiencies that are leading to the recurring ENT infections. These infections can then trigger PANS symptoms.
  19. Pr40 - yes this is true. I am so glad you posted. I think what you state is exactly correct and has been a large part of the PANDAS / PANS research controversy - those who say PANDAS is not a true entity use a narrow definition and are looking for specific markers - those who recognize PANS as an entity identify clusters of symptoms and more broad markers. One of the problems with this Singer study is that Madeleine Cunningham and colleagues DID find specific autoantibodies, and found that these were more elevated in kids with PANDAS during exacerbation as opposed to in remission (conva
  20. Singer is colleagues with Dr. Kurlan - who was from Rochester, NY but then moved to Hopkins. Kurlin headed up the large, longitudinal study of kids with Tourette that separated out kids who seemed to have exacerbations of tics and OCD when they were sick and called them "PANDAS" and then compared them to the "non-PANDAS" tourette kids. The abstract of his study basically says there was no difference between the groups, and that is as far as most pediatricians or other folks get when they "read" the study. They published the originial study in a high-profile journal and that study reall
  21. It is awesome that this works so well for you! Your child may also benefit from wearing compression undergarments - like underarmor.
  22. It is interesting that he did not explore this aspect. I want to believe there was a scientific reason for this, but I find myself wondering if it either was explored and did not come out in a way that Singer wanted, so it wasn't published, or if it was not explored because the likelihood of tipping the scales in favor of the PANDAS hypothesis would be too high.
  23. Actually - this is exactly what happened with Swedo and Cunningham. My understanding is that the blood from the PANDAS group in Cunningham's groundbreaking work came from the first 50 kids from Swedo's 1998 study.
  24. I was able to get the full text article. As with other work by this author and colleagues, the abstract does NOT represent the details in the study. Here is my take on the study: Singer took blood samples from the kids from the Kurlan study to test for changes in streptococcal, tubulin, and dopamine receptor 2 antibodies (no - there is no mention of Cam Kinase II in the article). We have to remember that this group of kids received throat cultures every month to check for strep and also had blood tests every few months to check for strep. If the kids had strep, their pediatrician
  25. I watched a TV show tonight. It had nothing to do with PANS, PANDAS, PITAND, mental health, physical health, health care system, parenting, or my job. It was a one-hour who dunnit with commercials. I remember when I used to watch these at least one or two nights a week. That was four years ago. Four years ago in November 2009 my son contracted H1N1 triggering yet another period of problems with attention, handwriting, executive function, separation anxiety and urinary frequency. Subsequent investigation finally led to the PANS diagnosis along with discovery of a sinus cyst, immun
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