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kimballot

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kimballot last won the day on May 27

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  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. Hi Kim - Hope you are having a great new years. Someone very nicely suggested I reach out to you when I posted this post last night. Any suggestions feedback: 

    Has anyone had their PANS/PANDAS child with Acute sinusitis have sinus surgery and what was the outcome. We see top PANS/PANDAS doc out of state our son has strep and acute sinusitis the strep titers are coming down form 800 to 236 with augmentium but he can't treat the sinuses with antibiotics so we have to see a PANDAS friendly ENT next week and its been almost 7 years of trying to get our son better so I am thinking sinus surgery ( both my husband and myself had this done) genetic condition. Anyone have any kiddos with PANDAS or PANS have this surgery done? I would love to hear feedback. We are seeing Dr. Donald Keamy at Mass Eye and Ear next week.  Thanks so much for any help to ease my mind at this point I am almost like take the tonsils out and do the sinus surgery I just want it all out NO more infections I am so sick of this condition!!!! 

  3. 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
  4. 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.
  5. 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
  6. 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!
  7. 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!
  8. 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
  9. Sent you a PM and am wishing you all the best. Keep fighting. The right combination of meds are out there.
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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.
  15. 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.
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