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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 ethmoid sinus and immune deficiency. After emergency surgery, we started him on HD IVIG, which initially triggered a severe PANS exacerbation. After several months of repeated HD IVIG, he showed signs of bartonella infection and began treatment for that. Around 2015 he seemed to be at a standstill- requiring rifampin and doxy and HD IVIG every 8 weeks. He was able to attend school part time, eventually finish an alternative HS with a local degree, and take some part time classes at a community college with grades in theC-B range. Vocational rehab worked with us, but did not want to invest money in tutoring or books for college as he scored so very low in math they did not think there was ANY college degree he could ever achieve. In 2017 he started seeing a local immunologist who does work with mitochondrial disorder, who did some bloodwork followed by a muscle biopsy, which showed mito dysfunction. He followed this with a genetic blood test which showed a genetic mutation leading to mitochondrial structural problems. He started on a mitochondrial cocktail and was soon able to go to community college full time. His grades went from Bs to As and he was inducted into the honor society. He transferred to a 4- year college last year as a dual major in philosophy and computer information systems. He loves computer coding. He has a 4.0 average. He has friends, work, girlfriend. He is a nice guy. He is still on doxy and the infectious disease doc we work with cannot explain why, but thinks it is gut-related. We are still searching to get him off doxy. He has not had IVIG since January, 2018, and he is fine without it. I am not telling you this to brag. I am telling you this because 5 years ago I thought he would never be able to live independently. I am also not telling you this to say the your child has a mito disorder. I have been on these facebook pages and forums long enough to know that there are only two things our kids have in common: 1. Unexplained psychiatric symptoms linked to illness; 2. Parents that recognize #1. I know you are the fighter, warrior parent. I know you know your child best. I believe you will find what works best for your child. I don’t care if that is psychiatric meds, mito meds, a gluten free diet, or mold remediation. I believe you will find it and once you do you will hang on to it. I wish I could wave a magic wand and just relieve everyone of their worries. I know how desperate I was from 2010- 2018, I know how many times I logged into this forum and hung on every word I read, and I know how much positive stories helped. I hope this helps you in your journey and I wish you all the best.
  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 helped us to make sense of everything and he is now on mitochondrial supplements. He has only ben on for a month, but his immune numbers looked better than they ever have on his most recent bloodwork.
  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 investigated we found sinusitis, a sinus cyst that needed immediate surgery, hypogammaglobulinemia, and bartonella. A teenager I once knew with severe disabilities told me: Yard by yard life's mighty hard, but inch by inch it's a cinch. Sometimes I feel like it has been millimeter by millimeter and sometimes we move two millimeters forward and one back... but overall it is moving in the right direction!
  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 spent his high school years trying to come out of it. He is now 19, and is really peaking after coming out of the second exacerbation. He finished High School last January, graduating with a local degree from the alternative high school program. He started taking a couple of classes at community college that semester. I did not think he could do it due to continued brain fog and executive function problems, but he stuck to it and finished two classes with grades in the A-B range. I was so proud! This semester he took 3 classes in community college (tried to take 4, but one was math and he still cannot do that - had to drop it). Again, grades in the A-B range and this time I did not do any work for him. I did not help him keep up with his assignments or figure out when he needed to study. It just sort of clicked! Today he said "I think if I was healthy in high school I could be going to a really great college right now!". I said "You are young and you have your whole life in front of you to make up for lost time. You have many years to go to college and learn all you want to learn". He also drives, has a part time job at a pizzeria and is a manager there. He has friends and goes to concerts and buys Christmas presents for his friends - a really supportive group of young men and women. The last post I wrote in 2014 is here http://latitudes.org/forums/index.php?showtopic=22747&hl= How far we have come in a couple of years. All that being said, I also know we are only one infection away from a crash and that stays with me all the time. He is still taking rifampin and doxy and has been for 2 1/2 years, and he still gets HDIVIG every 8 weeks. We want this to become a thing of the past, but every time we try to wean him off he crashes. It is very scary. I continue to look for new doctors and new answers. A new doctor thinks there might be an underlying metabolic disorder that has caused the immune dysfunction, so he had a muscle biopsy recently and we now await the results. The hardest part for me now is allowing him to become the independent person he so wants to be. I want him to be independent and make his own decisions as a 19 year old boy should start doing. I've cut the reigns when he goes to his regular doctor appointments, but I usually send him with a typed- out updated history since I won't be in the room. Today he told me that wants to start going to his specialist appointments alone and I am petrified. I worry that this may be a manic episode because he seems so un-depressed. I worry that he will miss something or that the doctors won't know what to do without me in the room prompting them. I don't know how to let go of this control or if it is even the right time yet. So, my PTSD continues, but my son seems to be doing well, all in all. I pray each night for all of the PANDAS families and I continue to do all I can to help all of our children. If you are feeling lonely, scared, overwhelmed, or just plain sad, please know that you are not alone. Keep the faith, stay connected, and never stop searching for answers for your child. All the best to all of us in the new year ~
  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 friend on this forum, LLM says it is like peeling the layers of an onion and it truly is. Each of our children has different layers, but they all need to be peeled away very meticulously until we get to the core.
  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 and rifampin and we started seeing some energy within one week. Within 2 weeks he was back to doing things with friends one night a week. By 3 weeks he was back at the skate park. Somewhere around 4 weeks he asked if he could have a tutor for earth science, since he did not get a very good grade on the final exam last year and he wants to take it again this year to try to improve his grade. Shortly after that he took a tour of the voc tech programs and decided to do a full day of school next year plus summer school this year to try to catch up on the classes he missed when he was on home instruction last year and try to graduate on time. Needless to say, Dr. B was happy - as were we. My son is making his confirmation this week, and it will be the first thing he has successfully started and completed in 4 years. I am so thrilled. Last year at this time I told a friend that i had accepted the fact that he would likely live with me for many years to come as I could not anticipate him ever being able to work enough to support himself. Today, I am feeling confident that he will one day be self-sufficient. He certainly still has a ways to go, and I understand that. Most of his friends are driving, have jobs, girlfriends, and are racing to get high scores on SATS. That is not his life, but his life is also not spent in bed or in front of the TV. Hang in there, everyone. Hang in there. Our kids are still a work in progress.
  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 days. Generally folks receive 1.5-2grams per kilo over 2 days.
  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. In theory, the "good" antibodies complex with the "bad: antibodies in the brain and remove them from the brain. This can take a while and sometimes kids have some flares while all this is going on, so don't be discouraged if you see some "turning back of pages"- or PANS symptoms you thought were gone. I find it best to look at the big picture and compare each month saying "overall, are we better than last month?". In the case of lyme, IVIG will not remove the lyme or do anything permanent while the infection is brewing. I am hoping you are getting good lyme treatment and he is on good antibiotics. The IVIG will help to support the immune system to make the other treatments more effective.
  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. Last year at this time he barely left the bed to meet with a tutor for an hour. in our case, the doctor believes he has a long-standing bartonella infection, but that is not entirely clear. Whatever it is, the combination of antibiotics and IVIG is helping. It has been a long process. Please tell your mother I feel for her as well and I hope she can also know there is a light at the end of this tunnel. It sounds like you have doctors that you like now and that are really working for you. The most important thing is to NOT GIVE UP. You said that your brain scan revealed autoimmune encephalitis. I hope you have read (or will read) "Brain on fire" and that your Mother will do the same. It is available in audiobook if you are not able to read much now and your local library may have it to download free. Hang in there!
  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/ Patients with Selective IgA Deficiency are often considered to be at increased risk of life-threatening allergic reactions, or anaphylaxis when they receive blood products, including intravenous immunoglobulin (IVIG), that contain some IgA. This is thought to be due to IgG (or possibly IgE) anti-IgA antibodies, which may be found in some IgA-deficient individuals. However, most patients with IgA deficiency do not have adverse reactions to blood products or IVIG. There is no consensus among experts in this field regarding the exact magnitude of the risk of these types of reactions in patients with IgA deficiency, or the need for caution or measurement of anti-IgA antibodies before administration of blood or IVIG. However, these reactions are very rare overall. Furthermore, anaphylaxis has not been reported in patients with IgA deficiency receiving subcutaneous immunoglobulin infusions.
  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 the mucous from collecting in one spot and becoming a breeding ground for bacteria? 3. If he has repeated sinus infections - it can be due to fungal sinusitis and/ or bacterial sinusitis. The doctors may be able to culture the sinuses to determine what is growing in there (though they cannot get back very far) 4. Is your son on prophylactic antibiotics? That may be necessary if the septum is not repaired. Best wishes!
  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 there are kids, like yours (and mine), who have some immune deficiencies. If IgG is declining, it could be a primary immune deficiency that is just now showing up and if that is the case your child may need repeat IVIGs to keep the antibody levels up. If this is the case, then you have to work with doctors to find the correct dosage as there are some conflicting thoughts on whether to do high dose IVIG (e.g.: 1.5-2g/kilo)repeatedly for kids with PANS and immune deficiency, whether to switch to low-dose (e.g.: .4-.6 g. / kilo), or whether to give a dose that is somewhere in between (e.g.: .75-1.0 g/kilo). So - my advice would be to find out why the IgG is dropping if you can. Test carefully for infection and treat before beginning iVIG, and make sure you have insurance coverage for repeat IVIG if there is immune deficiency.
  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 (convalescence), AND that the autoantibody reactions were highest in kids with Sydenham's Chorea, next highest in kids with PANDAS, and both of these groups were significantly higher in kids with tourette, OCD, ADHD or typical kids. So... when Singer comes along and does a study using different methodology and does not even DISCUSS how his findings are different than Cunningham's or how his methods were similar or differeht... it is like the Cunningham study never existed... and that is disheartening since so many of us have used her work to help understand our children's illness. The Cunningham study is here. http://pandasnetwork.org/CunninghamJNICaMKinase.pdf
  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 really was a notch in their professional belts. They became famous and basically told the medical community that just because a child develops tics and had a recent bout of strep does not mean that the two are related. Kids fall who fall out of trees and break their arms probably had Pizza recently, but it does not mean that pizza makes you fall out of trees (yes - I have heard that quote from more than one doctor). This article by Singer is the bloodwork follow-up to that Kurlan study (just like Cunningham's 2006 article was the follow-up to Swedo's 1998 paper). The thing they don't tell you in the abstract of the original article or in this artical though ... is that 1. The kids in that study may not have even had PANDAS 2. The kids in that study were tested for strep every month and their pediatricians were given permission to put them on antibiotics if they tested positive for strep (heck, most of our kids would not have exacerbations EVER if they had monthly tests and treatment!) 3. The kids in that study stayed on their medications designed to decrease tics and decrease OCD... then the authors reported that they did not have an increase in tics and OCD when they had strep (which was probably quickly treated with antibiotics anyway - see #2 above). All in all - a whole lot is at stake as far as the reputations of the researchers here and, unfortunately, our children are caught in the crossfire.
  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 pediatricians were notified and pediatricians were allowed to put them on antibiotics if they wanted to - but no one actually measured who went on antibiotics. Also, this many children in this study were on medications to supress tics and manage OCD symptoms and they remained on those medications throughout the study - so we really don't know if they missed exacerbations because the symptoms were suppressed. Furthermore, the kids in this study had relatively few changes in OCD during exacerbation - as opposed to the kids in Swedo's first 50 cases. Now - here is my take on this article Singer and colleagues had 44 kids with PANDAS - of those, 19 were in exacerbation at the time of the blood draw (as determined by a clinician in the Kurlan study). He had 40 kids with Tourette - of those 13 were in exacerbation, 27 were not in exacerbation at the time of the blood draw. He had 24 kids who were just typically-developing kids. He ran Elisa assays based on a modification of Lopez and Schnaar (2006) procedure. I really don't know anything about assays, but the Cunningham (2006) article used a different method for their analysis, so I wonder if the method itself can lead to some differences in findings. When he did his analysis, he used non-parametric statistics. Cunningham used a combination of parametric and non parametric. Parametric statistics actually make it more likely that you will find difference between the groups; non parametric statistics are less robust and make it less likely that you will see differences. However, you really need larger sample sizes for parametric statistics... so the point here is that just the type of statistic alone could make a difference in the outcome. RESULTS: 1. Antitubulin - they actually found that kids with TS in exacerbation were significantly higher than those who were not inexacerbation. However, kids with PANDAS in exacerbation were not significantly higher than those who were not in exacerbation. However, he then compared the TS kids in exacerbation with controls and those not in exacerbation with controls and reports there was no difference. So... the take home message here is that the kids with TS actually showed increased tubulin binding when in exacerbation as opposed to not in exacerbation. 2. Table 2 looked at tics, OCD, and ADHD symptoms and compared kids with PANDAS who had an exacerbation with a strep infection to those who had an exacerbation without a strep infection. Interestingly, of all the children having exacerbations in both groups - only tics increased consistently. 6/12 had increases in OCD with the exacerbation, and only 3/12 had increases in ADHD. So - this is the question about the Kurlan study all together - were these really PANDAS kids (with only 1/2 of them having OCD increases) and, if so, were they really in exacerbation? 3. Anti -D2 - no significant differences were seen among the groups, although the PANDAS kids showed some differences between those in exacerbation and those not in exacerbation, but it was not significant at .061 (.05 or lower is significant). 4. N-acetyl-beta-d-glucosamine (GlcNAc)- For this test, the kids with PANDAS overall were actually significantly LOWER than both TS and controls, and the binding was higher in PANDAS kids in exacerbation than those not in exacerbation. Since the overall binding was lower than controls, they dismissed it. I really don't know how to interpret this. Perhaps someone else out there knows more about this test. So that is my take on this study. I am hoping Cunningham will chime in at some point (perhaps on Radio Pandas??) to let us know more about the intricacies of this research vs. hers.
  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, immune deficiencies, and mycoplasma. Surgery, antibiotics, steroids, IVIG, hospitalizations, inability to attend school, and multiple trips to out of town doctors and local doctors ensued. I believe his case is one of the more complex cases. He is now attending school and continues to receive IVIG regularly. He is still tired much of the time, but is learning in school and is a great, fun teenager. And me... I am a Mom who watched a TV show tonight. Now THAT is amazing! Hang in there folks... we are all going to beat this thing!
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