Neurologist's finding about my daughter

[azhorsegal]

Well my husband and I took our 7 year old daughter in to see the Neurologist because she's been having tics, started with eye rolling when she was 5, and now the tics are pretty much everywhere, though she can still play, run and they don't seem to bother her that much. Other kids do notice but so far have been pretty laid back about it (of course she's not at school yet). She did tell me last night though, that she wishes she was just back to normal, it broke my heart. The Neurologist said she had Childhood Motor Tic Disorder but would not classify it as TS, because she didn't seem to have OCD or ADD or those others, just tics (she's also had motor tics, small ones, but did not have them during our doctor visit). He also said that what she eats or drinks has nothing to do whatsoever with her tics, triggering them or increasing them. He's a firm believer that whatever is going to happen will happen and there is not much I can do about it. He didn't give us a support group # or anything to help us cope with this new issue that's in our daughter's life, and this WILL bring up some emotional times because of her disorder. I for one am not giving up and am going to do my own research to try and figure out if certain foods and/or ingredients do trigger her tics. He said if her tics do become disabling, then we can stick her on Topamax. Has anyone taken this drug and found it to help, or does it just cause more problems than what it's worth? I did order that book "Tics and Tourette's: Breakthrough Discoveries in Natural Treatments" so hopefully that will also give me some help. If anyone here knows of a doctor in the Phoenix area that understands tics let me know. THANKS! Oh, what's a DAN doctor?

[Chemar]

 

Yes, sadly that sounds like the standard response from a neuro!

 

There are very few of them who have taken the trouble to actually stay up to date on anything that isnt related to a prescription or surgery I guess in addition to telling you that what she eats doesnt matter he also said that medications rarely have side effects!

Plus, for him to suggest that ALL people with TS also have ADD or OCD is flat out WRONG!!

 

DAN doctors originated as a group of physicians dedicated to provide help for Autism (DAN=Defeat Autism Now) However, as so many off the issues found to help in autism (detox from heavy metals like mercury, treat gut issues like candida/yeast and food allergies, diet, supplements etc etc) also are beneficial for TS and other neurological disorders, many DAN docs now also treat TS etc

 

There are also other Integrative doctors (conventionally trained but specialised in alternative medicine) who follow similar protocols and a whole lot more! to the DAN docs

 

There is a sticky thread with a heart next to it at the top of the forum here that may help you in finding a DAN or Integrative doctor. Arizona is known to have a lot of alternative physicians so you will hopefully find

one easily. Before you make any appointments tho, you should FIRST ASK if they have experience treating tics and Tourettes

 

I am so glad you have ordered Sheila's book as there is a wealth of information there.

 

Honestly, as most of us have found, we are the ones who have to stay informed and do the research and then hopefully find a good doctor who is aware of these things and is also willing to listen to what we have learned and become knowledgable about it too and see if it is a viable treatment option

[Sydsmom]

I just wanted to encourage you to keep searching. The neurologist we took my daughter to said much the same as yours did. At first I was devasted but decided not to listen to him and find help through diet and supplements. This site helped immensely. I don't even remember how I found it - but thank God I did. Our daughter is doing so, so, SO much better. It's been almost 2 years but boy are we seeing the fruits of our labor and hers. So keep going. You'll run up against opposition from many (even possible family members) but keep going. Goodluck to you and your family.

 

Lisa

[azhorsegal]

Thanks so much Chemar and Sydsmom, your encouragment is greatly appreciated. I will certainly not give up and will not be detered by the Neuro. My father suggested seeing a DO, Doctor of Osteopathy, I guess they focus on taking care of the whole patient, not just the illness. So maybe that will also be an option. I did have a pediatrician friend give me a slight warning about the Neuro I was going to see, saying he doesn't have the best bedside manner's and to just be prepared that he might not be as helpfull as I'd like. So at least I wasn't shocked by his attitude of, "Well, yes it's tics, but not much you can do." My friend did give me a psych's # that she said I might want to go to, to at least help us deal with this new development in our family. Her son sees the same psych for his OCD and said this lady is very helpful and is a believer in the more natural the approach the better. But like you said Chemar, I will definitely ask if they work with Tics and Tourette's. Thanks again!