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kimballot

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  1. Like
    kimballot got a reaction from CandKRich in New Hope New Year   
    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. Thanks
    kimballot got a reaction from Jherrera in New Hope New Year   
    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. 
  3. Like
    kimballot reacted to mcbull in New Hope New Year   
    Having raised a kid now to college with constant PANDAS struggles, I am convinced immune health is key.  We had a period of antibiotics and then tonsillectomy which seemed to provide some relief.  But continue to manage separation issues and particular obsessions.  Currently using prozac and pretty aggressive CBT (ERP). 
    Having recently overcome significant digestive issues, I am convinced the key to strong immunity is a clean and healthy gut.  My kid was exposed to antibiotics at birth, had chronic constipation as a toddler, and was OCD symptomatic at age 3-4.  We have a sibling with anxiety and narcolepsy, another with ADD/ADHD, we had some of these mild tics off and on. I'm sure they are related.
    I recognize the parental panic.  The kids need examples of dealing calmly with these issues.  All we can do is find someone good to work with and continue to try the next thing.
  4. Like
    kimballot got a reaction from 4Nikki in Is it worth seeing a geneticist?   
    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.    
  5. Like
    kimballot got a reaction from MomWithOCDSon in Update on DS - now 19   
    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. Like
    kimballot got a reaction from philamom in Update on DS - now 19   
    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 ~
     
     
     
     
  7. Like
    kimballot reacted to 3boysmom in Update on DS - now 19   
    I haven't been on here in a long time either. So nice to hear things are moving in the right direction.😊 We are doing well also, I'll post an update soon.
  8. Like
    kimballot reacted to DC24 in Update on DS - now 19   
    This story really inspires me, as I am also 19!
  9. Like
    kimballot reacted to MomWithOCDSon in Update on DS - now 19   
    Kimballot --
     
    Great to hear from you, and so happy to hear about your DS's progress, successes, etc. You've worked so tirelessly to help him, and you should pour yourself an extra glass of bubbly this New Year's a toast yourself!
     
    As for the whole letting go of the apron strings things, I hear you! I've been doing the same for the last year or so . . . sending DS into his own doctors' appointments by himself, and then hoping he'll share with me the primary items, advice, etc. He usually does, but I really have to work hard at not prying beyond what he offers up. That's also translated into my turning over his supplement regimen to him entirely. I can see, now while he's home over the holidays, that some days he pops in a zinc and/or a B6, and other days he doesn't, which would have, at one point in time, freaked me out. But he seems to be doing well and managing himself and his life well, so I continue to work really hard at "dialing it back." Way easier said than done, though!
     
    Here's hoping you and yours have a fabulous New Year and 2017!
  10. Like
    kimballot reacted to tinaw in Update on DS - now 19   
    Thank you for posting this. My DS is 15 and we are feeling particularly down and discouraged right now. It's great to hear that there's hope. I will keep your son in my prayers for continued progress.
  11. Like
    kimballot reacted to mama2alex in Does this sound like pandas?   
    You've basically just listed off many of the most common symptoms of PANDAS/PANS. (I include PANS because it's not always strep triggering the problems.) OCD, tics, rages/meltdowns, separation anxiety, biting/picking, and food restriction are all very common and telltale signs.
     
    You should have her checked for strep, by both culture and blood test, because many have discovered strep without having seen a typical presentation of illness (painful sore throat, white spots on the throat, etc).
     
    The foot pain is a very common symptom of Bartonella, which is an infection you can get from ticks, fleas (from a cat or dog), or a cat scratch, and often goes hand in hand with Borrelia (Lyme Disease). You can search this forum for Bartonella and find many discussions. Many families on this forum have found that Bartonella and/or Lyme, as well as a number of other infections, have played a role in causing their child's PANDAS/PANS symptoms. Rages/meltdowns are also a common symptom of
    Bartonella.
     
    If you can get the PANDAS pediatrician to test for Bartonella and Lyme through Igenex Labs (and they know which tests to order), as well as doing the strep tests, that would be a great place to start. If they won't order Igenex testing, you would be wise to go to a Lyme-literate doctor - they will also be able to test for strep and many other things. Other common infections in these kids are Mycoplasma, Babesia, Epstein Barr (virus), Candida (yeast overgrowth), and HHV6 (virus).
  12. Like
    kimballot got a reaction from AliceInWonderland in Interesting perspective from Beth Maloney   
    I know I've not been posting much lately, but I feel a need to chime in here. My son is 16. Grant is 17. My son had a major exacerbation in 2011. So did Grant. My son had severe OCD that made it difficult for him to get to school. So did Grant. I struggled to find help for my son. So did Grant's Mom.
     
    My son's exacerbation was so bad that he had to be hospitalized in a psychiatric ward. We had a file at the local police department so they would know what they were dealing with when I called them in the middle of the night to come and help me put my son to bed. My son never hurt another individual, but he posted horrible things on facebook that he SAID he did - though he never ACTUALLY did any of them. I don't know if it was hallucination, fantasy, or OCD. He listened to depressing, gruesome music and fought with me constantly to wear his hair and clothing in anti-social ways. It is hard for me to sort it out. I just know it was horrible ... fast. One police officer told me my son needed to go on PINS and that I needed to get the justice system involved. Thankfully, it never came to that.
     
    I changed insurance so my son could get IVIG and be treated by experts all around the country. I was very fortunate to have that option. Slowly, with each doctor, we made modifications in his treatment. Slowly, slowly, slowly, he came back.
     
    Today my son is a loving, kind, even-tempered and humerous young man. He still struggles with fatigue and brain fog, but overall he is a very likable kid with a big heart. When people hear who my son is the first thing they say is "what a nice kid". My son received treatment. Grant did not.
     
    I do not know what would have happened to him if we could not get treatment. I have no doubt he would be in trouble with the law.
     
    Can untreated PANDAS become antisocial behavior? I don't know.
     
    I do find it interesting, though, that many people in the PANDAS community have gone to great lengths to support the families from LeRoy and the families at Boston Children's when the doctors have said "this is not PANDAS"... but we are so quick to turn away from a controversial case when it is not pretty. No, we do not want our children associated with antisocial behavior... but if this IS the result of untreated PANDAS then it is best that we find out soon!!
     
    I am wondering why we are not screaming at the top of our lungs to find out if Grant has PANDAS and if immune treatments remove the antisocial behavior. Is it possible that a portion of the children in juvenile detention centers could be helped with antibiotics, steroids, and IVIG? Wouldn't that be amazing.
  13. Like
    kimballot got a reaction from afsml in Interesting perspective from Beth Maloney   
    I know I've not been posting much lately, but I feel a need to chime in here. My son is 16. Grant is 17. My son had a major exacerbation in 2011. So did Grant. My son had severe OCD that made it difficult for him to get to school. So did Grant. I struggled to find help for my son. So did Grant's Mom.
     
    My son's exacerbation was so bad that he had to be hospitalized in a psychiatric ward. We had a file at the local police department so they would know what they were dealing with when I called them in the middle of the night to come and help me put my son to bed. My son never hurt another individual, but he posted horrible things on facebook that he SAID he did - though he never ACTUALLY did any of them. I don't know if it was hallucination, fantasy, or OCD. He listened to depressing, gruesome music and fought with me constantly to wear his hair and clothing in anti-social ways. It is hard for me to sort it out. I just know it was horrible ... fast. One police officer told me my son needed to go on PINS and that I needed to get the justice system involved. Thankfully, it never came to that.
     
    I changed insurance so my son could get IVIG and be treated by experts all around the country. I was very fortunate to have that option. Slowly, with each doctor, we made modifications in his treatment. Slowly, slowly, slowly, he came back.
     
    Today my son is a loving, kind, even-tempered and humerous young man. He still struggles with fatigue and brain fog, but overall he is a very likable kid with a big heart. When people hear who my son is the first thing they say is "what a nice kid". My son received treatment. Grant did not.
     
    I do not know what would have happened to him if we could not get treatment. I have no doubt he would be in trouble with the law.
     
    Can untreated PANDAS become antisocial behavior? I don't know.
     
    I do find it interesting, though, that many people in the PANDAS community have gone to great lengths to support the families from LeRoy and the families at Boston Children's when the doctors have said "this is not PANDAS"... but we are so quick to turn away from a controversial case when it is not pretty. No, we do not want our children associated with antisocial behavior... but if this IS the result of untreated PANDAS then it is best that we find out soon!!
     
    I am wondering why we are not screaming at the top of our lungs to find out if Grant has PANDAS and if immune treatments remove the antisocial behavior. Is it possible that a portion of the children in juvenile detention centers could be helped with antibiotics, steroids, and IVIG? Wouldn't that be amazing.
  14. Like
    kimballot reacted to T_Anna in Hang in there! We are doing well   
    So happy for you! We are hoping to get over the hump soon too.
    T.Anna
  15. Like
    kimballot reacted to sf_mom in Hang in there! We are doing well   
    Fantastic News!!
     
    It is always amazing to me how certain combinations of antibiotics can be so helpful. It has been our experience under the guidance of LLMD that when things plateau or regress we typically switch at least one antibiotic or sometimes do a complete rotation of antibiotics and recovery takes off again (minus the herx). With 3 children suffering from chronic infections we have experienced this type of turn around many, many, many times.
     
    I can't wait for the next update as I sense the improvements will continue.
  16. Like
    kimballot reacted to bigmighty in Hang in there! We are doing well   
    Oh yay!
  17. Like
    kimballot reacted to Hopeny in Hang in there! We are doing well   
    Great news. So in the end do you think this is Lyme/bartonella?
  18. Like
    kimballot reacted to qannie47 in Hang in there! We are doing well   
    So glad for you and your son!!! It is like an elixir for hope and provides great emotional nutrition when good news is shared!!!!
    q
  19. Like
    kimballot reacted to Dedee in Hang in there! We are doing well   
    I am so happy to hear this news from you. You deserve it after all the years of struggle. Happy Day!
     
    Dedee
  20. Like
    kimballot reacted to searching_for_help in Hang in there! We are doing well   
    Awesome! So happy for you, and it gives the rest of us much hope.
  21. Like
    kimballot reacted to dut in Hang in there! We are doing well   
    So pleased for you
  22. Like
    kimballot reacted to MomWithOCDSon in Hang in there! We are doing well   
    Great news, Kimballout! Kudos to you and your DS for all the hard work, resiliency and determination. You guys rock!
  23. Like
    kimballot got a reaction from philamom in Hang in there! We are doing well   
    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.
     
  24. Like
    kimballot got a reaction from SSS in Hang in there! We are doing well   
    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.
     
  25. Like
    kimballot reacted to Sheila in Dr. Triffiletti   
    Hi Pik,
     
    We know how very difficult it is to find a doctor that is the right fit for a family (Not to mention the expense!). Unfortunately, it is a major challenge.
     
    That said, we do our best to avoid focused discussions of any particular physician in this open forum.
     
    Members should please send a private message if they have any comments they would like to share.
     
    We hope you understand--and also hope you find the right doctor for your family.
     
    With best wishes, Sheila
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