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putting together the piece

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  1. Just had Aboulia mentioned at our last neurology appointment. Doc. postulates that there is now frontal lobe dysfunction caused by prior PANDAS. Having a brain MRI on Friday. If you ever got further information on the subject please share it. Thanks
  2. My Pans son had dissociation for years. Turned out he had Lyme disease. Treatment lasted 3 years. Symptoms slowly began to resolve (including the dilated pupils.) He is much improved now but it was a very long road using multiple abx simultaneously for the 3 years. You might want to seek out an LLMD for a rule in/out.
  3. We used it for awhile (2 years) seemed to help.
  4. Hi, I have seen both anorexia and binge eating with PANS/PANDAS. The binge eating occurred while receiving hd ivig. It was crazy. Anorexia occurred at another time. Minocycline addressed the anorexia so I figure that was infection triggered. I suspect when eating is affected the hypothalamus is inflamed. Try to figure out what could be causing the inflammation and perhaps address it that way.
  5. Hello, My older DS tested negative via INGENEX the first time we tested. He had been sick a very long time and was not making antibodies against Lyme anymore at all. His brother was CDC positive as was I. We tried provocation (1 month on antibiotics for Lyme) then retested. Results was CDC positive. His body needed the antibiotics to help him make antibodies against the Lyme. Please google provocation for Lyme testing for a better understanding. Good Luck.
  6. I had good success with my two boys using Dr Garabedian, 491 Allendale Rd #222 King of Prussia , Pa.19406 610-265-0500
  7. When my son had his first ivig there was no after flare. However after his second ivig he had what is referred to as a turning back of the pages. That flare lasted a pretty long time and I began to doubt whether he should have had the second ivig. It finally ended and he was better off than he had been prior to the second treatment. Hang in there!
  8. Sounds like an underlying infection weakening the immune system and allowing everything to hit him hard. Did you check for Lyme?
  9. Check for Lyme and its co-infection Babsesia. Ingenex lab is best. Provocation very helpful before hand.
  10. For what it is worth, both my boys have been on the LDI for Lyme for a year now and that has proved to be beneficial. Last month they started the LDI for strep. We had 1.5 days of disrupted behavior and then things evened out. I am hoping to see good results from this as well. We started at a very low dose of 7 parts per million.
  11. Hi, Both my ds's had strange symptoms which distorted their ability to understand where their own body was in space. Although not the same as your child's experiance exactly, it was similar enough for me to wonder if your child has Lyme diseaese. Both my boys do and these very strange symptoms have begun to resolve with treatment.
  12. For my 10 yo he must wear long sleeves and pants to school even on days when temperatures near 100 degrees. While there is no air conditioning in his school and he is extremely hot his fear of germs will not let him go without the added protection of long sleeves and pants. Last year he had to wear 3 shirts the entire year so I guess we are making progress but omg! this ocd is rough.
  13. Hello Everyone, Our school district is allowing me to educate the staff on PANDAS/PANS. When I speak about OCD I am afraid all they will be thinking about is complusive hand wasing and lining up toys, but I know that OCD manifests itself in many, many ways with our kids. Please help me give some very real examples so I can help educate and spread the word. Thank you!
  14. Not sure about other testing but if you suspect congentital Lyme please consider provoking with at least 30 days of antibiotics prior to Ingenex testing. My kids were congenital Lyme and their systems were so weak from having been sick for so long that their first tests were negative with some indeterminate bands. After provoking with abx for 30days they were both CDC psitive. Could have saved myself the cost of that second test if I had known in advance.
  15. Have the same script here for use with blood draws and iv's. Only used it once. Didn't seem to be that great. May have something to do with the MTHFR mutations or some other reason it wasn't metabalized the way my body would have metabolized it. I haven't bother to use it again.
  16. Emst is correct. If your child has not already been evaluated that is step one. You as a parent can request an evaluation directly from your child's special education department. After the evaluation if you are denied an IEP follow my prior advise on crafting a letter.
  17. Go to webpediatrics.com read the information on PANDAS/PANS/PITAND you can craft a great letter pertaining to your childs needs based on a lot of the information Dr K. has published on this site. Have your doctor sign it. Send it in with a request for an IEP. If you are denied ask for mediation. You may get offered a 504 plan instead of an IEP initailly if this is the case case also ask for mediation. A 504 plan is good but an IEP is much better. You will be asking for OHI (other health impaired) as your disability.
  18. We are flaring here too!. Same scenerio, no obvious triggers yet it has been bad. Maybe there is a lot of mold from the wet summer? Not sure.
  19. Thank you to everyone who has responded I appreciate each and everyone of your suggestions and I am very sorry I haven't had the time to enter a response to each one but I have been trying to work, run back and forth to the hospital, all while feilding about a hundred phone calls, and constantly researching. I know you understand. My son has been very cooperative and calm at the hospital so the staff think its time for him to come home. I rather doubt he has been magically cured of all that erratic behavior just by a brief time out in a different envirnment. I fully expect the behaviors to resurface once he is home. That being said this has given me time to do some research and run his genetic information thru Prometheus which at least gives me a idea on whether or not some various psych drugs will work for him or create an even more toxic load. I hope I am wrong and he can maintain his composure in varied environments but just as he does well in school and then falls apart the minute he gets in the door I fear we are in for a difficult time.
  20. My ds10 has been hospitalized during this most recent horrific flare. He and we are no longer safe with him home. He has PANS and Lyme. The admission was yesterday and the hospital is giving him his antibiotics and his probiotics but in order to keep him the hospital 's doctor just informed me that I must agree to psych meds or insurance would not cover his stay. The doctor is suggesting Seroqeul(sp?) or Risperadal. We tried Risperadal a long time ago and he only got worse. So I do not want to go the anti-psychotic route. I had 23andme done for my son his snps are as follows: MTR A2756G ++ SHMT1 C1420T ++ VDR BMS + - VDR taq + - MTRR K350A + - BHMT -02 + - BMHT -04 + - BMHT -08 + - CBS C699T + - I told the doctor I would research and give him my answer tomorrow. Would SSRI's be a problem with these snp's? Does anyone know? My son seems to be violent, irratable, angry, hyper sexual and very inappropiate and then he flips like a light switch and is almost baseline for a few momoments and then flips back to crazy. He is more stable in the hospital which is probably the effect of adrenaline pumping thru his system as he is afraid there. I don't know if that helps or not. Any insight would be much appreciated. Thank you.
  21. Yes a doctor in Pa. is doing LDA and LDI for our family. We are having good results.
  22. Yes, I am sorry it sounds like your dd is entering the PANDAS world. Please get her to a PANDAS/PANS knowledgable doc asap. She cannot help anything that she is saying or doing. The faster you get her help the better off she will be in the long run do not delay.
  23. I totally understand that issue. I have one of those children where saying "no" is just not a smart option (at least during an exacerbation). It sounds like the abx may be creating some die off your child is not handling well. One thing I would suggest is trying some detox protocols aways from the abx to see if it helps her out at all. Detox with lots of lemon water throughout the day and try Diatimacious Earth maybe at bedtime on an empty stomach or you could use charcoal capsules to soak up the toxins in the body. I hope this helps her.
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