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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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Nursing my own son thru a lyme herx at the moment, so I'll write more later. But if your DD was sick enough to test positive on CDC. its highly possible that 3 weeks of an abx did not get rid of it. Lyme and Pandas symptoms look very similar in some kids and lyme can also cause an autoimmune response.

 

I'm sorry for your horrible LLMD experience. You should never have to buy supplements from your Dr and it sounds like your care was very poor. But I wouldn't dismiss lyme and co-infections (mycoplasma being one of several tick borne infections) as at least one force behind your DDs symptoms.

 

Some of us have kids with both Pandas and lyme. If you can say what region of the country you're in, maybe someone can suggest some resources for you.

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Thanks LLM! I am in the south east - NC and willing to travel. That's where I am at in my head... thinking that the Lyme has caused PITAND. Just so confused right now as to how to proceed and getting such mixed messages from doctors. Sorry to hear about your son... what is causing the herx?

 

hugs-

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I know this is awful right now with the new school year approaching. Just FYI. Amox does nothing for my son and has never worked real well for any infection for him. I don't know why it took you so long to get registered for this forum, but glad you can finally get some answers. I can't offer much in the way of doctors in your area, but I know others will chime in on that. We found a good doctor on the list of treating doctors located on the pandas resource network. They list them by state so maybe you could find someone within driving distance to you. From what I understand the top five specialists have about a four month wait list so you would probably want to find someone close to home in the meantime. I really understand your frustration. Our pedi also wanted to say that I was crazy and that my sons tics must just be transient tics related to stress. I of course knew better. A child does not go from totally normal one day to non-stop ticcing overnight. He gave me a list of all the "good" psychs in our area. When the bloodwork finally all came back five days later positive for strep I was like-Duhhhhhh. Anyway good luck and I hope you get the answers you are looking for. This forum is wonderful and helps keep me sane. The moms here have a wealth of knowledge and are willing to help.

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Thanks Missmom :) Yes, Dr. L in MD has a wait until December. It makes me sad to think of how many kids must be suffering to have such a long list. But it sounds like she's worth the wait. I'm happy to finally be a part of the forum. We start school on Wednesday and I'm praying for a miracle to keep her able to focus and I know I'm going to need the support! Best to you and your family-

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Be sure to bring a copy of Dr Swedo's white paper describing PANS, so your ped can't dismiss PANDAS due to no strep trigger! The PANS paper includes lyme as a trigger (found on pandasnetwork.org)Seems like you have done your research, you're on the right track!

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