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Hello all,

I am brand new to the forum after trying to become a member for a couple of months now... I'm so happy to finally have gotten a validation email, you can't even imagine :) Please bear with me and my long post-

 

My DD7 has, I believe, PANDAS or probably more likely PITAND. Long story somewhat short - she started with a motor tic back in April of sticking her fingers up her nose. She had done this briefly last fall but it only lasted a couple of weeks. Then in May she started with a chronic dry cough that came from nothing. A couple of weeks after that she started with moving her fingers often as if she was playing the piano. Right after that tic started she got a sinus infection and was about to develop an ear infection so dr. gave her Omnicef for 10 days. The fingers tic really made me nervous so her pedi agreed to do blood tests. She tested her for anemia, strep and Lyme.

 

To my surprise she tested CDC positive for Lyme, and no strep. I was really thinking she had PANDAS so I was very surprised when she had a positive Lyme test also she hadn't had a tick bite that we'd known of. Pedi then ruled out PANDAS and she then went on 3 weeks of Amoxycillin.

 

Vocal and motor tics didn't get any better, in fact they became worse and are now always there in some form. A re-test of the western blot showed "no more lyme" so our pedi says she believes that my DD just has anxiety and said we ned to go to a psychologist. Yes, I certainly agree that she does have anxiety! however I DO NOT believe it just came from out of nowhere.

 

So next we found a LLMD. He gave us a "treatment plan" which consisted of a ton of supplements we had to buy from him and 5 prescriptions. This experience was a nightmare. He told us she had a babesia co-infection (based on only her cough) and gave us no direction as to how to take the meds, when to take them, side effects to watch out for, etc. It took a week of researching to get just a slight understanding of why he had given us what he gave us and his office was no help at all. Meanwhile he took 14, yes 14, viles of blood from her all at once. I was horrified and reluctant to do anything before getting those test results back as i don't like the idea of giving my kids meds unless I have to. However, they refused to give us the test results until we went back to his office for a follow up which he wouldn't book for 5 weeks.

 

Anyway, I raised holy ###### as I paid for them all (like most LLMDs insurance doesn't cover it) and legally I have a right to her medical records. I finally got copies of them 4 weeks after the blood draw to find out she has an extremely high level of Mycoplasma as well as very low WBC count, high t-cells - pretty much everything pointing to autoimmune. Luckily, Zithromax is the one RX I have had her on so I am praying it will start to help with something.

 

We managed to find a wonderful chiropractic Dr. who met with us immediately last week to go over her case. He is very familiar with PANDAS and seems to have an amazing understanding of the brain. He explained that a child doesn't always have to have strep right before and that infection can build up and lead to a tipping point where inflammation then occurs and the body turns on itself. Now, our big issue is finding an MD who we can work with to treat her. I am going to our pediatrician tomorrow morning armed with the labs and research and Im gong to ask her to consider this as a PANDAS case again. Meanwhile we have been given other supplements to decrease inflammation and help the blood brain barrier, and I am keeping her on the Zithro.

 

For those of you that have stuck with this post... thank you! And can you offer any insight to a very confused mommy??

 

:)

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