PANDAS

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Hi everyone,

 

I just wanted to update, seems there are a few new PANDAS mom's joining - we continue on azithromycin once every 5 days( dropped to this dose last week) - our son had been symptom free starting school (while on full dose) and then had some eye tics from the lights. More lights have been turned out and his desk moved and the eye tics are going away - they are not extreme - but still there. Vocal stuff was 100% gone on full dose azith. By day 4 off azith we heard some vocal stuff come back, it decreased again after the dose of azith. His next dose it on Saturday. He is not 100% free of tics, but doing well - most of the time tics are subtle.

We saw the infectious disease specialists again and they were agreeable to running some tests ( thanks Mustang Carole!!) We are also going to be referred to immunology and neurology - so I am happy about that - mostly the immunology. We are also scheduled to see rhueumatology in November.

 

I am really happy we have to date not needed to use meds - but never say never. I am concerned that if tics get worse again, and we have tried everything, that I may have to try that route, very cautiously. As my son gets older I recognize the impact tics could have on him socially - to date when he has had tics, no one has noticed ( even in the early PANDAS days when they were NOT subtle) I am really getting so tired of all of this. But thank goodness for the internet and all of the support I have found here. I went in today with a list of questions and a list of tests I was requesting. The doctors were so kind and recognized my need to not leave a stone unturned. I figured the worst that could happen was they would say no to me. I could not have asked for a more positive outcome of our appt today.

 

Good luck to all the new PANDAS mom, keep searching for answers and advocating for your kids.

[Claire]

Alison,

 

My son became more photosensitive over time (between age 8 and 10). A result of this was an increasing tic reaction to the same level of TV/computer that hadn't bothered him in the past. Something to consider.

 

The light sensitivity can come from many things, as discussed in the past. Pyroluria, b2 deficiency, mercury...

 

If it is pyroluria or mercury, then antioxidants should help...as they cause oxidative stress. I know your doctor didn't think mercury. I think that France mercury urine test that Kim posted that I did was only $112 US dollars (plus $2.50 for shipping). It shows oxidative stress and metals. No doctor's signature required.

 

Claire