neurologist

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Hi Everyone,

 

We had a follow up with a neurologist - my son continues to do well on azith and there is no plan to try any other meds at this time. He is 9 now. My main question to the neurologist was my ongoing concerns when I see ANY tics that they are damaging the basal ganglia. My fear is of course permanent damage. She assured me that all the studies done and imagining done to date do not indicate any permanent damage to the basal ganglia with PANDAS patients. She said it was not like a regular injury - like if he have a bad knee but kept running, it just gets worse and worse. She also said that since he is doing so well now - there is a good chance things may not get any worse - and stay status quo. She said she usually sees things get worse from ages 9-11. She also assured us as have every doctor we have ever seen - that he will more than likely be tic free by 18 if not sooner.

I know all of our kids are different, and there are no guarantees - but this was good news for us. We have seen our son with terrible tics - and at times worried if he could attend school (luckily things have always been worst in the summer - at the time of onset, and again when we took him off antibiotics). Today he is happy and tics are minimal - and I have also come to terms with them. She agreed with the ID clinic that he would probably stay on antibiotics until 18.

[kim]

Alison,

 

I'm so glad you got some reassurance and a Neuro who is informed about PANDAS, what luck there!

 

You have posted about using Bonnie's vit recently. I just wanted to remind you, since they contain calcium and magnesium, be sure not to give them at the same time as azith.

 

I hope you will let us know what you see, after your son is on them for a while. They have been very helpful here.

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Hi Kim,

 

Thanks for the info on the azith - I did not know there was a problem - you are sooo knowledgeable. Where in your brain do you store all this info?????

I just asked itsme on another thread about her experience with Bonnies - did you see any increase initially? There are so many variables going on that it is always hard to pinpoint what is causing what. We are starting them slow - and seeing where it goes. From the ingredients - it is much like the vitamin protocol he was on before - but easier as it is in one bottle.

[Chemar]

so glad you have a good doc, Alison

 

re Bonnie's vits...yes some report that they see an initial increase in tics and then the improvement follows

 

as you know, some do not tolerate them and need to take separate supps rather than the combination in the TS-plus by Bontech

 

if I recall correctly, Ronna's PANDAS child initially increased tics on the Bontech, but then did really well on them

 

hoping for steady improvement for your child