Frustrated!

[mommaonamission]

I made my son an appointment at the end of October to see a Neuro. That is when the PANDAS triggered the loudest vocal tic imaginable. I couldn't believe that was the soonest they could see us, but we took the appointment and have been supplementing in the mean time.

 

So his appointment was for yesterday in Austin, and we got the big freeze. In this state when it gets that cold, everything shuts down. They cancelled school, and we were determined to make it to the long awaited Neuro appt no matter what. Then the docs office calls and cancels with me. She just said to call back this morning. So, I'm thinking that they will reschedule me right away since we have waited over a month.

 

She told me we could not get in until mid January! My son is regressing for some reason right now and he can't wait that long. Carnosine was working like magic for a couple of weeks...less ticcing and no rage. Then literally overnight they came back really bad. I've been racking my brain. At first I thought it was the doughnut his grandma gave him, but that should have been out of his system by now. He is still ticcing pretty bad. It is becoming a little less frequent I noticed this morning, but the shouts are coming in three's, and really really loud. He is our new alarm clock.

 

I can't wait that long to see the doc. I don't expect miracle answers, but it is our next step. Did any one else have this problem.

 

Also...

 

Just wanting to make sure that no one has ever experienced ticcing from allergies to Christmas trees?

[Chemar]

Hi Mom...we dont ever have a "real" tree because my son reacts to them!

 

honestly, although an appointment with a neuro is important in terms of neurological diagnosis, in my experience personally and in talking with enough others, once the neuro has made a diagnosis they will likely try to recommend prescription drugs

 

In the meantime, maybe you should try to see a good Integrative or DAN doctor to at least start the process of testing for heavy metals, yeast etc etc and begin a physician guided treatment protocol.

 

also remember, as hard as it is, try not to let your own frustration and concern over all this to show to your son. The best medicine to keep tics down really is lack of stress.

 

I can fully understand your annoyance with the neuro.....if they cancelled they should put you on a wait list and then fit you in asap.......not make you wait another long time!

 

((hugs)) to you........

[mommaonamission]

That is exactly what I thought they would do...not put me at the back of the line again. I am going to insist on getting in. I have heard good things about this particular Neuro, but even if he tried to push the meds, I don't plan on going that route. I think I'm going to check out the DAN doctor. Thanks for the advice!

 

Does your son react to the tree by ticcing more, or is it just an allergic reaction? Thanks!

[Chemar]

yes, he tics more, and I think it may be allergy or SID related.(he has always had hypersensitive olfactory sense, and reacts the same way to chemical smells, perfume and other nasal stimuli. So I think it is some form of nasal stimulus setting him of re the trees. Only real fir/pine/spruce trees do this to him, not artificial so I confess we have a large lookalike tree: In our previous home we had a lot of pine forest nearby, and he ticced a lot more there.

[mommaonamission]

Thanks Chemar. It kind of freaked me out last week after we got the tree, he was ticcing really bad, and it was the first time the thought even crossed my mind. But he had actually started ticcing bad the day before or so. Plus, he has never had any reaction to smells, and so far we have had a real tree every year. Could the PANDAS that triggered the tics now be causing him to react in a different way to smells? Oh, this is going to be a long season.

 

How is your son by the way?