BoyIowa

I have been using Pure Formulas. Cost are often very very close to amazon, they have free shipping and they send you a 10% off your next order each time. Usually get order in 3-5 days.

We use Nordic Naturals ProEPA, at recommended dosing. They carry pills, gummies and liquid I believe.

I have federal cigna, do you think OPM would help with an appeal to a denial?

So happy for you!! It is always great to hear good news stories. It gives us hope.

We first noticed the ticcing before we realized the weird behaviors were OCD. We thought it was just weird games or our ds amusing himself. Then the tics became worse and we realized that the unrelenting behaviors were OCD. We found PANDAS, but the tics and OCD got much worse and were joined by extreme anxiety and hyperactivity before we started treating with abx. I think every child presents differently. Every child has a different 'perfect storm' that is their trigger.

Thanks for the great info and links. I am working up the appeal letter now.

We use Super Nu-Thera with 25 mg P-5-P multivitamin and Nordic Naturals ProEPA omega for ds 8.

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Ds had several rounds of abx from about 9 months to 2 years from many eye and sinus infections. Then nothing until strep at 4 and nothing again until strep and PANDAS/Lyme at 6 1/2. No glutathione.

Our Ped told us last week that he recently attended a medical conference and PANDAS came up as a point of discussion. He said that there were believers, non-believers and those in the middle. He asked me questions about who we were seeing and what their specialties were. I told him that doctors don't know enough about PANDAS and we were seeing those doctors willing to try and help. Not sure where our Ped stands, he is not the point in my ds treatment - I have been. I told him that we were shotgun blasting for help; trying multiple treatments like abx and vitamin and supplements (already tried the psychotropics and SSRIs). So far abx have been the most help. I got the impression that he was trying to be point - he had his shot several months back and didn't act on it. Perhaps your Ped was at the same conference and someone suggested that they ask us these questions. My Ped backed down when I didn't back down on the questioning. He did tell me at our first appointment (after firing 3 other docs) that the ones that know best what a child needs is the parents.

We use melatonin spray at night for sleep, but it doesn't always work. Some nights we have to talk about what is keeping ds up. We bought the books, 'what to do if your brain gets stuck' and 'what to do if you worry too much'. Just started reading them. Ds often thinks about the house burning and loosing all of his stuff. I remind him that it is just stuff and we can always get more stuff. Some nights we discuss the multiple available escape routes in the event of a fire and check the smoke detectors. We only do this about once a month and then remind him that we just did it so we are safe.

We are about 6 weeks in on Methyl B12 shots. They have given ds more more energy as well as his OCD and tics. DAN told me to wait until 8 weeks in and add GABA and Taurine. Both were supposed to be calming and GABA was supposed to help better with tics (though I think some of his 'tics' are compulsions). Because ds hyperness went up quite a bit after starting B12 and has trouble sitting in school, DAN recommended magnesium glycinate to calm. Supposed to take it twice a day, but not sure how we are going to do that and stay away from abx for 2 hours during the school week. Might have to ask the lady that ds goes to before school if she can give to him just before school. Unless it is going to make him too tired. I am not sure which one, but I believe we were told that if one made tics worse to try to back down the amount. I will have to look through my emails from the DAN. We are starting the magnesium glycinate next week when it arrives in the mail. Will only do the GABA if the first doesn't help. Not extremely comfortable playing guinea pig with my ds, but at least it is more natural than the SSRI's and psychotropic drugs and we can stop without harmful side effects.

Some of the things that my ds does that I thought were tics, he does "because it makes me feel good" Or "because I have to" - that I realized is OCD.

Great info, thanks! We will take ours 2 hours away from the abx. We are going to try adding GABA after the magnesium glycinate. We were also suggested taurine.

We have been praying for an approval - denied! IVIG is considered experimental for PANDAS and Lyme. I am so angry! Our insuance will pay for a sex change if I want it, but not for treatment that may help my ds because it is cinsidered experimental, investigational or unproven and not medically necessary. I wonder what nay-saying doctor is on their board. Sorry to vent - spent an hour shoveling snow to work off some anger, but I think it made me more mad thinking about it. Where do I start on the appeal? I think it has to come from me as the request for IVIG came from a LLMD and we are seeing another doctor for PANDAS. Anyone have good experience from an appeal? Did you submit or the doctor or both?

Our DAN just suggested that we try Magnesium Glycinate because it is a 'calming nutrient'. Just ordered it through the mail, hope to start it next week.

Our first appointment with the LLMD was a couple months out. He ordered the test before we saw him, had confirmation of Lyme and on antibiotics from our pediatrician (at the recommendation of the LLMD) prior to our appointment. Not sure if all LLMDs work that way, but ours did.

We were just recommended magnesium glycinate 250mg by a DAN for tics and for calming. We were recommended: http://kirkmanlabs.com/ProductKirkman/128/1/Buffered%20Magnesium%20Glycinate%c2%ae%20-%20Bio-Max%20Series%20-%20Hypoallergenic/

Recently switched from azithromycin to clarithromycin ER (Biaxin XR). Wondering which abx worked better for most kids. Did we make a good choice to switch? Using in combo with Augmentin XR for Lyme, PANDAS, and Myco P.

Agree with posts above. Tested for and found Lyme at the advice of another before we knew fully what Lyme and and PANDAS were. Ds 8 has had chronic back pain for over a year now. Bought him a king size memory foam pad and folded in half for comfort. Didn't help. About a month ago had such pain behind knees that he had to sit down right away. I think his pain is much worse when he is going through a growth spurt.

I am with bulldog24 on this one. With the amount of useless doc visits we had last year that were a huge waste of time, mileage and money, $1k would have been a bargin.

I am interested in this as well. I lost 2 before my ds and 2 before my dd. We are seeing a LLMD and a DAN. Which would I ask about this test?

Not sure yet if gut issues are a piece to the puzzle, but just found ds is allergic to eggs. Don't know how we didn't notice it in the past 8 years, but he had been complaining of stomach aches recently. We had the blood allergy test done by our LLMD at my request. 1 week egg free and no stomach aches, crossing fingers.

My ds has Pandas, Lyme and Myco P. He is on Augmentin XR and just switched from zith to Biaxin XL.

I did see the literature from Cigna that says PEX is considered medically necessary for Pandas. However, I have seen that several kids have IVIG after PEX. Is that necessary? I would be concerned about going for the PEX if our Cigna wouldn't cover the IVIG if it is needed too.