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About wornoutmom

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  1. My ds17 has a story similar to those posted above. Diagnosed at age 6 after several chronic strep infections - complex vocal tics, separation anxiety, enuresis, sensory problems, food restriction and confession ocd to name just a few restrictions. T&A at 7 along with SSRIs and ERP therapy provided some significant recovery for several years, albeit definite flares with illness (usually bacterial). 2nd exacerbation at age 12 brought on panic attacks, rages, severe school phobia. Despite having a diagnosis, there was no evidence of strep and therefor no medical treatment. Instead, psychia
  2. Tomorrow is my son's 17th birthday and I'm feeling emotional, and more than anything, a profound sense of gratitude. He'll be celebrating tomorrow a very different person than when I first posted to this group 3 years ago. Though I rarely post anymore, and I'm not sure how many reading now remember me, I often think back to that lonely night in a Maryland hotel room 3 years ago when yet a second PANDAS expert told me "this doesn't look like classic PANDAS". I turned my computer on completely devastated and defeated, to say goodbye to this group, and was met with warriors, urging me not to g
  3. Wish I could help. We had aetna two years ago when we pursued ivig and got nowhere despite the head of pediatric neurology conferencing with their medical director and two appeals. I see not much has changed. We ended up taking out a home equity loan and paying out of pocket. You might look into purchasing secondary insurance privately that is known to have a good track record with coverage. One thing that had changed is that kids with preexisting conditions cannot be denied benefits and despite the cost it is bound to be cheaper than paying out of pocket like we did!
  4. I rarely post here anymore, but still read the forum faithfully. I just wanted to say that you guys are my heroes for being so proactive in contacting Dr T, contacting these parents, contacting the media etc. If these kids are PANS, are treated and improve, it may be the tipping point that this disorder needs to finally finally gain mainstream acceptance. Think of all the future kids who might be properly diagnosed and TREATED. My ds16 has been diagnosed since 2002, when there was barely any knowledge, treatment or support. We spent many years alone with this... It is amazing to me to see
  5. melanie: I can't imagine the stress you and Danny have been under this past week. You both need some time to recover just from the experience of teh hospital alone. This was major treatment and it would be normal for both of you to be anxious, depressed, and a bit traumatized. I would encourage you to give it some time and a return to "normalcy" and then try to evaluate if you see any of his PANDAS symtpoms improved. Meanwhile, try to take care of yourself and recover. I have to say that I disagree with PANDAS16 in that learned behaviors, no matter how long they have been around, can be
  6. Hi, possible to add me to the Michigan PANDAS group if it exists?


  7. My 15 yr old PANDAS son has been sufferring from chronic headache and vertigo. His pediatrician suspects rebound headaches from Ibuprofen use, and wants to try him on a low dose of Topomax to see if we can stop the Ibuprofen and get him headache free. In my research about this drug, i find that it is a glutamate inhibitor, and has been found useful in some OCD clinical trials. Hmmm...has anyone tried this on their PANDA or used it themselves?
  8. I am SO sorry I havent replied to your post!!!!! I just now signed in and realized it was on here! Dr Harry Chugani at Detroit Children's Medical Center is a world renowned neurologist who is treating PANDAS, and also specializes in Autism. He will see you!! Also, email me at rhelinski@aol.com if you would like to join our Michigan support group online...

  9. Yes and yes... But u already knew that. Call dr c again if u can. He has been good about getting pandas kids in asap if they are in distress. Or contact Cathy at the above email and she will likely get your appointment moved up
  10. Hello! I have two sons with Autism. I have suspected PANDAS for my oldest for some time. This past weekend my 4 year old developed an eye blinking tic. I am in Michigan and I am trying to figure out where I should take him. Are there any neurologists in Michigan (or surrounding states) who are familiar with PANDAS?

  11. Joan. I am so so so happy for you and your son I am grinning from ear to ear. I hope your son understands and appreciates what an amazing mom he has in you. You have never given up on him and worked your tail off doing everything under the sun to help him. I hope you see lasting relief and both of you can enjoy your summer
  12. my PANDAS kid passed out in the office after receiving these vaccines. A week later, massive stomach cramps, fever, diarreha, and the beginning of a downward mental spiral that has not returned to previous baseline 3 years later. I believe it was the overload on the system. If i could take it back, I would have never done it. I have felt guilty, angry etc.. My Youngest, nonPANDAS, was due for these vaccines this year. We discussed each indivdually, and found no reason to administer them. The risks of the vaccine seemed to outweigh the chances of him actually contracting these diseases at this
  13. Wow Kim. Reading that update was like reading my own story from a year ago with my 14 year old son. Like - down to almost every last detail except we hadn't gotten IVIG yet. It's eerily similar. Almost creepy. Can I ask if you have tried Biaxin as an antibiotic yet? The start of that drug began the tapering off of the rage and defiance for my son.
  14. Mia: I am so sorry you are having to fight so hard. I've been there, and it is an awful, helpless, powerless feeling. Our children shouldn't have to suffer because of doctor's arrogance and ignorance.
  15. Wilma: We went the hospital route 3 years ago when my son pulled a knife on himself, at the urging of his therapist. We had to call the police to get him there. It was so incredibly traumatic for all of us. The docs at the hospital knew about PANDAS, but had no idea about treating it and did not. My son cried for 7 days straight from separation anxiety, and came home like a zombie from the ramped up dose of Risperdal. Two good things came out of that week, the first being that I got a few days of respite after months and months of exacerbation. The other was that from there on out, no si
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