Where to begin...? Doctor question

[Gwen]

I have read the book, I've read the post, I've gone to a TS support group and talked to other families in my area. But I'm still somewhat flummoxed.

 

My son's tics (mainly vocal chirping, some hissing) started in earnest in late June. He'd do minor noise things before that would last a very short time and he seemed to be able to stop so I thought they were just weird childhood things. I didn't even think to mention at his well-child appointment in February.

 

After they escalated, I found this website, ordered the book, researched environmental doctors and talked to other Tourette's families. I got names of neurologists that were liked and disliked and thought I'd make an appointment, but nearly every family said that, given my son seems to have no co-morbidities (although he does tend to want to wash his hands more than necessary, I think, but not to any obsessive degree, so who knows?) the neurologists would pretty much say "your son has TS or tic disorder, here's some info on it, if it gets debilitating we can medicate, see you next time." So that led me down the environmental doc path, but they, of course, require payment in advance and I'm not sure about reimbursement from my insurance company. Which is fine, whatever, I'll pay out of pocket if I have to. But then I started reading about PANDAS and such and I wonder about testing for it and general allergy testing. Who does the strep tests? A regular doctor? The neurologist? The environmental doc? Should I go to a regular allergist first to rule out the big stuff? A regular doc/neurologist if they will do the strep tests? Because, honestly, I would prefer to get any tests that will be covered by insurance done by a provider which is covered by our insurance.

 

Meanwhile, while we already eat a pretty natural diet, we're trying gluten free and not allowing treats or anything with artificial anything or preservatives. (And gluten is the hard one, because the other stuff was already a once in a while treat.) We have yet to give up dairy. The tics themselves have waxed and waned.

 

Anyway, thoughts, advice and suggestions would be appreciated.

[Cj60]

Hi Gwen,

 

We went to an environmental dr. who works in coordination with an allergist and followed their advice. The practice is definitely alternative; where the traditional drs. we saw had zero helpful advice, this practice was very willing and able to explore outside the box. I asked about PANDAS and Lyme, and the dr. didn't think there was enough reason for us to test for those things (though a Lyme test is still on my list of definite things to test for, just to know for sure). We wouldn't have known how to proceed without their assistance. I can't recommend highly enough finding someone who has experience and advice for what you're dealing with. That being said, fortunately, our insurance covered the visits and the tests we had run, so I know that can color things...

Good luck

Chris

[lismom]

We (my son and I) are on the lyme board now but we started here many years ago. Before my son got lyme/bartonella, he was being treated for allergies with shots. He manifested minor ticcing which did resolved after being treated for allergies to grass, weeds, trees, cat and dog. This testing was requested by our peds through an allergist. Most insurance will cover. Shots were the only thing that worked for him after trying everything else available. Dairy is known as a cause for vocal tics sometimes so that might be an easy thing to eliminate now and see what a week or two can bring. Years later my son got ill. I came to the conclusion that it was PANDAS which eventually got diagnosed as lyme with a co-infection of bartonella. He presented with pneumonia type illness and motor tics.

 

If you have a pediatrician that will work with you it will make all the difference. Some kids just have a ticcing disorder. Others have a reason behind it. If you decide to eliminate potential causes, make a plan with the simplest things first. Allergies, food sensitivities, strep(this is the aso & Anti-Dnase b tests.) Your pediatrician can order these. Viruses, and lastly lyme(which is through Igenex. This is out of pocket. Kathy

[Gwen]

Thanks for the replies.

 

It is really helpful to hear what other people have done. I'm still mulling this over. It's so new and I'm having a hard time with it. I want to take action, but there is still the part of me that wants to pretend it just doesn't exist. Difficult to do on the days it sounds like there is seagull in my living room, though!

 

If nothing else, we can start eliminating dairy tomorrow. That one will be easier than gluten, I think. My son likes milk, (and, of course, ice cream!), but cheese, yogurt and the rest, he really does not care for much. He's started sniffing today, though. So maybe that is not considered vocal (?) and it won't help. I'm pretty much willing to do anything at this point, though.

 

I can pay out of pocket if I have to, but given that I have insurance, I prefer to use those resources first, if possible. I just don't want to go that route only to be told there is nothing to be done.