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mom2ty

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  1. FYI Here's what I sent!! YIKES!! The Oprah post will only allow 2000 characters...the below is a lengthier version of what was sent. Dear Oprah, I'm writing to you to request your help in shedding light to a very rare disorder called PANDAS. PANDAS is an acronym for Pediatric Autoimmune Neurological Disorder After Stroptococcus. Please take a moment to read my son's story. Tyler, once energetic, fun loving, compassionate, gentle and polite, a thirteen year old (yes teen aged boys can be all of these things) was stricken with Lyme Disease in the fall of 2008. Prior to the onset
  2. Fired my reply off already colleen....thanks all! Knew I wasn't just in a bad mood when I read the article!!
  3. The only treatments I am seeing they want to give is medication for symptoms which leads to multiple meds for all the different issues. Really scary isn't it?!!!!! Has anyone posting here heard of a psychiatrist in the Washington Area - Dr. Adam Hedaya? Would love to get some feedback. Ty's infectious disease doctor is referring us to Dr. Hedaya who is supposed to be knowledgeable of PANDAS and LYME and uses very holistic approaches. Anyone familiar?
  4. Your daughters great week sheds hopefullness to all who read. May she continue to recover. Healing wishes
  5. Sorry all...specialist hails from Boston not DC. Sorry for the error.
  6. http://www.childrenshospital.org/views/april09/q_and_a.html Recent article posted by specialist at Children's Hospital....the more I read the more disheartened I become. Mom2Ty
  7. hellllooo? what am I missing here? Hi EAMom. I don't think you're missing anything...I think they are! I absolutely agree that there is very limited and conflicting information on NIMH site. With John Hopkins, Children's Hospital and NIH in my backyard...I still am not quite sure where I should seek the best care for my son!
  8. I do know about the plastic and all the bad stuff (chemicals) that come out when its heated. For this reason we never put plastic in the microwave and we never drink water out of a plastic bottle that has been heated (like left in the car) Myrose, I have also heard that it is not just heating plastic that can release these harmful chemicals....I think the reaction occurs anytime you have extreme temperature changes. I was known for freezing water bottles for coolers, sporting events, etc. It is argued that these same chemical releases can occur when you go from a freeze point to t
  9. http://clinicaltrials.gov/ct2/show/NCT0000...ccus&rank=3 I didn't find this through NIMH website. I found it through www.clinicaltrials.gov. BE SURE when you're entering in the condition that you type out the FULL name of this disorder and not the acronym PANDAS. Hope this helps. I've logged a call to the trial organizer and hoping to hear back soon. She said it could take up to a week or two, we're on to the 2nd week.
  10. Mom2Ty - How are you guys treating the Lyme? Just curious. My little guy also has the Lyme diagnosis on top of PANDAS and Aspergers. I'm sorry to hear about you son. We've been treating the LD since October. First round of abx was Augmentin for 30 days in October. Ty didn't respond as much as the pediatrician would have like so she then referred us to the IDD. The IDD prescribed Minocycline 250 mg a day and upped this to 500 mg after about 2 weeks. He discontinued the Augmentin. We were on the Minocycline through January, even though Ty's OCD kicked into high gear. After we complai
  11. hi sandree, Just wanted to address the portion of your post re: clinical study at NIMH. I was able to find a PANDAS study that has been ongoing and is currently taking patients. It is research based and not treatment based. I don't hold out much hope that we will benefit too greatly from this as their goal is to gather data and not to implement treatment protocols. I contacted NIMH and spoke with a coordinator. She felt that my son Ty (13) was a good candidate and indicated that we should hear something in a week or two. We've been maybe 4-5 days into the process, but haven't heard
  12. My son ty was taking minocycline for quite some time in treatment of his Lyme Disease. Doctor indicated that discoloration of the tooth is a very real symptom of long term use of Minocycline. Not sure if you're daughter has been treated with Minocycline or not. I think we've come to the conclusion that we'll take the discoloration over the other symptoms of LD and PANDAS. Now we're off the minocycline, hopefully things will get better.
  13. Hi all, Our infectious disease doctor was the one who suggested to us that the family dog can carry strep. I've called the vet, waiting for a response.
  14. One more question: Pandas dd has raised skin color bumps on both of her knees (this is relatively new), any thoughts? Hi DCMom, As a newbie to PANDAS I don't really have a suggestion for you on the strep portion of your question. Re: the bumps, my son does have these and they drive him quite crazy...they itch and he digs at them. The infectious disease specialist is constantly looking for rashes like these each visit. This past week the bumps increased in number and severity of itch; he suggested that we re-test for Bartenella (a co-infection of the Lyme Disease). He indicated tha
  15. Best of luck, and hang in there. Things will get better for our kids and families. They have to! Hi Dad, Thanks for the post prior to spring break...I was blown away by your son's story (it was so familiar to our own). I really appreciated the information you posted and the encouraging words your post brought to me and my husband. I'm not sure how to add friends to my friends list but when I figure it out would like to add you to my list. New to this blogging, I'm slowly getting it! Thanks again and I will continue to check in on your son's progress and update on Ty.
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