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pr40

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  1. Like
    pr40 got a reaction from Hrosenkrantz in Is it typical for PANDAS dr. to not file insurance?   
    yes, most PANDAS drs in New England do not accept insurance. what we do is have "point of service" kind of plan and then submit bills for reimbursement after we meet a deductible.
    among other things, PANDAS is very expensive.
  2. Like
    pr40 got a reaction from Mommy2MCL in no treatment for now   
    here is why wait and see might not be the best strategy: when there is an exacerbation, it means that the body has began to react not to an infection but to its own reaction to that infection. the auto-reaction has already started and it takes time for it to die down.
    for this reason, abx is taken prolifically, to prevent an auto-immune reaction.
     
    one could even suggest -- not speaking as a scientist, of course -- that your kid may not be displaying symptoms even when there is some underlying auto-anti-body process going on. or that you are not catching up on those symptoms.
     
    I don't want to alarm you just to give you a different way to think about what you are seeing.
  3. Like
    pr40 got a reaction from qannie47 in Tapering off steroids can it cause a flare   
    I haven't heard that tapering itself can cause an exacerbation. steroids, if I am correct, lower immune system. it's possible that your son just got sick. the thing to look for is if this exacerbation lasts less than his previous ones and if its intensity is lessened. if that is the case, I would call what you have progress.
    have you tried ibuprofen? diet?
    i read somewhere that IVIG takes about a year to have a full effect
  4. Like
    pr40 got a reaction from MaryAW in 6yr old son, showing signs of PANDAS please help   
    first of, you may want to know if there are PANDAS friendly drs in your area. I would start another post with that question as your topic.
    if there are none, you may want to call closest dr from the PANDAS list and make an appointment.
    you can try with local pedis -- in most cases, you need to convince them to try certain things. the forum, under pinned materials, contains info about blood tests that should be ordered, etc.
    pedi might be also willing to put your ds on prophylactic abx.
    in general, best use of this forum is by asking specific questions like: how can I get my pedi to prescribe prophylactic abx
     
    there are several things you can do while you wait -- ibuprofen seems to help many children as do changes in diet (no sugar, healthy food, toward free of gmos, gluten, etc.)
    give us some sense of your ds's symptoms. why do you think this is pandas?
  5. Like
    pr40 reacted to 3bmom in Alzheimers Infections similar to PANDAS/PANS, Autism   
    Researching around I found this very informative.
    Seems to me we have rendered the innate immune system dysfunctional. What should become dormant is creating havoc neurologically. Depending on the age of onset, infants-Autism, young children- PANDAS/PANS, elderly-Alzheimers. Looks like it's ALL the same thing!
     
     
     
     
    http://www.psychologytoday.com/blog/evolutionary-psychiatry/201110/could-alzheimers-dementia-be-caused-virus
  6. Like
    pr40 got a reaction from Momwithacause in Help with PANS   
    I am taken aback by the complexity of your situation. Can anyone on this forum really add to the options you are already considering?
    If you are in California -- Stanford seems to have a functioning PANDAS center, perhaps trying their is your best bet.
    one thing only, depending on his genetic makeup, mb12 may have side effects might be increased ticking.
  7. Like
    pr40 got a reaction from nicklemama in Tell me I'm wrong...   
    why resists PANS diagnosis? symptoms fit, genes also. such diagnosis offers some hope and you know how do deal with it.
    what would be your alternative diagnosis? bi-polar?
  8. Like
    pr40 got a reaction from Josie in Benefits of going Gluten Free /Relief from Symptoms   
    i doubt very much that you can identify precisely what the benefits of gluten free are, unless you are celiac but even then. So, I want to second rowingmom, diet is an aspect of a comprehensive treatment.
    I do want to add this, you don't have to be gf and df forever. Give it a year or two for the organism to get able to tolarate various kinds of inflammation.
    for our part, diet gf, sugar f, dairy f, nightshade f, non-organic corn free, with abx and supplements is a part of the treatment and kids are doing much, much better. we saw gradual improvement over 1 and a half years and going dairy, sugar, and gluten free where noticable bumps for the better. Our kids do still have issues and they are not completely without symptoms.
    In all, I would encourage you to take this step if this is at all possible for you -- you need to learn how to cook this kind of diet which requires time and resources.
  9. Like
    pr40 got a reaction from ashley in Help! Abx stopped working?   
    have you tried 2 abx? our dd who has some similar symptoms, like nosebleeds, had to start second abx, augmenting was our first and zytro second, three months after the first. after she started augmenting things were improving very slowly, with two we saw a bump.
    I am more skeptical about testing that previous posters since in most cases solution is to do 2 abx. my point is, why test if results would not lead to a drastically different therapy.
    that said, I do think we should try to get rid of things that are not good for you like mold in your house.
  10. Like
    pr40 got a reaction from CYAZ in New Member Immunologist   
    make sure to check Lyme with Igenex. the regularity, if I understand this one correctly, suggests a bacterial cycle. I assume you saw suggested blood tests under the pinned materials.
  11. Like
    pr40 reacted to JoyBop in Some good news   
    I've been MIA for a while and just wanted to give you all an update. A quick refresher on where we were: ds8 was in a constant chronic pandas flare with OCD, anxiety, mild tics, ADHD and General bad feelings about himself. The worst of all was his ADHD like behavior in school which made his daily functioning very difficult. The teachers just ignored him and let him wander around the classroom during instruction. He was often eating things off the floor (compulsion) and then obsessed all night about who saw him eat what and how embarrassed he was. Each day was traumatic and awful. The school refused to meet with me or my doctors and put us off continually until their evaluations we're complete. In the meantime, we had gone to the NIH for the study after winter break and I began to realize that the longer he was away from school the better he became. After 3 wonderful weeks out of school he fell apart the very day he returned. We knew at that time we had to find a new school. We had been asking for meetings and support since August and here it was February and we still didn't have a meeting yet. Enough was enough.
     
    I had requested the IEP eval in Nov but it took the school until the end of January to set a date to meet with us. We had planned on withdrawing him the day after the meeting as we enrolled him in a wonderful, small private school. Unfortunately the meeting date came and it was a snow day. I had to withdraw him before the meeting. It took a whole month to reconvene and he was denied an IEP. In fact, they denied there was any problem at all and that he was perfectly smart and gave him a worthless 504. They were vicious and angry and pointed their fingers at us and yelled at us. It was ugly. My husband and our doctor were there and I was able to sit there and smile and say , yes, I believe my son is now in the right place.
     
    It's now been about 5 weeks since my son has been in his new school and all I have to say is WOW!!!!! I have a new child!!! I haven't seen him this happy and relaxed in a year and a half. He thanks me daily for everything I do for him, but especially for allowing him to go to his new school. He tells me how unhappy he was at his other school but I always redirect the convo to tell me what makes him so happy now. He feels so wonderful about himself bc he receives positive praise all day long, is in a small classroom with the same teacher all day, and says they just treat you like family there. It just feels like home. It brings tears to my eyes!!! I never would have imagined that simply changing his environment could have had such a huge impact on him. He still has difficulty with attention but he Is held to the same rules and standards everyone else is and he's thriving. His OCD is diminishing and is being replaced with a positive self esteem. The handwriting and math is still very poor but his teacher will always find the positive and that puts a huge smile on his face and gives him the strength and the will to proceed. Yes, he was ready to heal and we've been at this for a while now. But this school situation was holding him back and dragging him down. I'm so thrilled that everything turned out just the way it did bc I would never have thought to put my child in private school Bc our schools are so coveted where we live.
     
    Keep the faith everyone. Follow your gut and don't give up. Sometimes it seems like they will never get better. I've been there myself for so long. But if my kid can have this incredible turn around yours can too. I encourage you all to consider the impact that emotional stress has on the blood brain barrier and do what you can to help alleviate it. It just might make the difference your child needs to heal. I am 100% convinced the the wrong school environment and lack of support perpetuated my sons symptoms each and every day.
  12. Like
    pr40 got a reaction from ashley in GFCFSF vegetarian suggestions?   
    qannie, I never liked pancakes and I have no experience with them. Here is the logic however: what makes wheat flour good for baking? gluten because it acts as a pliant glue. Xanthan gum does the same. Garbanzo flour is heavy and tasty as is corn meal. Starches (potato, tapioca, corn) are light and absorb a lot of water.
    I can improvise: 1/3 garbanzo flour, 1/3 tapioca starch, 1/3corn starch, one egg, some coconut milk, some oil, one teaspoon of xanthan gum. perhaps, coconut yogurt for added aroma.
    if pancakes are your chief problem, you don't really have a problem at all.
  13. Like
    pr40 got a reaction from ashley in GFCFSF vegetarian suggestions?   
    qannie, there is a substitute for everything. just ask.
  14. Like
    pr40 got a reaction from ashley in GFCFSF vegetarian suggestions?   
    trader joes has the cheapest version of coconut oil that we could find. at 70 degrees it is not liquid. and, yes, we use it to replace butter, approximately one to one. this oil gives our muffins special aroma and smell, frankly, much better than regular muffins. we put it on bread and it it with jam.
    we also use it as substitute for other oils and fry with it.
  15. Like
    pr40 got a reaction from ashley in GFCFSF vegetarian suggestions?   
    one advice about CF. you got to do two things to go CF. First, throw out all the CF containing products and do not buy them again. Second, start using coconut products. It is easy to get used to and fat content makes it a great substitute for cow milk products. You can bake with it in place of butter. You can use coconut milk just like you use milk. The only thing that there is no substitute for is cheese, unfortunately. For many people, dairy is among the worst triggers. Do goodle search on dairy and mental illness
  16. Like
    pr40 got a reaction from qannie47 in Does this sounds like PANS / PANDAS?   
    if abx changes her asd symptoms, I would run to Latimer.
    I would NOT however, introduce my child as ASD with possible pandas. I would start with grimacing and the effect abx had on her, with a recent tick bite. If you start with ASD, you might seem like yet another mother too hopeful for her child with autism -- I am quoting what I heard from two PANDAS drs, said with a very disparaging tone.
  17. Like
    pr40 got a reaction from MomWithOCDSon in FYI -- fish oil and brain   
    this site ranked different fish oils https://labdoor.com/c/fish-oil
  18. Like
    pr40 got a reaction from Mommy2MCL in Need Help...Still Struggling   
    only a slightly different response from the previous ones: slow and gradual change is the kind of recovery we saw. change in symptoms as well. so, I would say that it seems your kid is on her way to improve. transitional times are going to remain the more difficult then the rest of the day.
    ocd book helps us with those -- dawn hubner's when your brain gets stuck. we read it with dd several times and then tried to practice it.
    i noticed no fish oil -- see my other post on it. it seems to help healing
  19. Like
    pr40 got a reaction from qannie47 in FYI -- fish oil and brain   
    story seems unbeleiveble, http://www.cnn.com/2014/01/18/health/fish-oil-recovery/
    what's even more strange is that this appears not to be the first case.
    i am positng it here since, in part, PANDAS healing involves recovery of certain parts of the brain.
    we've been on fish oil (w/out mercury) for as long as on abx.
  20. Like
    pr40 got a reaction from MomWithOCDSon in FYI -- fish oil and brain   
    story seems unbeleiveble, http://www.cnn.com/2014/01/18/health/fish-oil-recovery/
    what's even more strange is that this appears not to be the first case.
    i am positng it here since, in part, PANDAS healing involves recovery of certain parts of the brain.
    we've been on fish oil (w/out mercury) for as long as on abx.
  21. Like
    pr40 reacted to Dedee in Advice Needed   
    Here is my suggestion.....You have a ped that is at least opent to the idea. You have a child that you know exactly when this started. The NIMH says these are the critera. Dr. Sue Swedo and her team at the NIMH are more than happy to discuss these criteria and treatment with physicians. All you have to do is e-mail her and give the information. Include physicians name and phone number, and the background on your daughter. If Dr. Swedo can't contact your ped personally then one of her team members will.
     
    I know a couple of people who have done this and it really works out well. Just goe to the NIMH website and the information is there. They highly encourage this exchange in order to educate physicians and help kids.
     
    Other wise you need to immediately find a PANDAS / PANS specialist and make an appointment. You need a full lab work up and appropriate antibiotics. You need someone who is experienced and knows how to deal with this type of situation.
     
    Dedee
  22. Like
    pr40 got a reaction from Janny in Got no where fast!   
    what's really frustrating is that this dr does not ask himself what mental illness is. are there many kinds? how is it connected to immune system and how to digestive system? how can it be managed given the complex relation with immune system and stomach? etc.
    in my mind, most "specialists" are just that "specialists" and we, Pandas parents, need to educate ourselves to be able to manage our children's care since, obvisously, "specialists" are not going to do it for us.
    this is then not to say that my children don't have "mental illness" but that what they have is wastly different than what this dr assume under that term.
  23. Like
    pr40 got a reaction from qannie47 in Got no where fast!   
    what's really frustrating is that this dr does not ask himself what mental illness is. are there many kinds? how is it connected to immune system and how to digestive system? how can it be managed given the complex relation with immune system and stomach? etc.
    in my mind, most "specialists" are just that "specialists" and we, Pandas parents, need to educate ourselves to be able to manage our children's care since, obvisously, "specialists" are not going to do it for us.
    this is then not to say that my children don't have "mental illness" but that what they have is wastly different than what this dr assume under that term.
  24. Like
    pr40 got a reaction from BeeRae22 in Daughter has emergent condition- I suspect PANS and NEED HELP   
    if you are in CT, why not contact Yale Child Study Center and dr Lekhman? he was one of the two principlas in the NIH PANDas study.
    I would call them right away.
  25. Like
    pr40 got a reaction from Lymefight in New to forum- DS 9 has Lyme, severe OCD question   
    like the other posts say, don't focus on the content but on the fact that your child has intrusive thoughts. i am surprised that LLMD is suggesting stopping abx. Personally, I would not do it. Instead, i would try anti-inflammatories like ibuprofen and steroid taper (if it is appropriate for lyme).
    are there conifections? yeast?
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