New here - Need suggestions for 6 year old DD! Please help!

[Ashley B]

Hello! This is my first post so bare with me! Heres our story: We first noticed my DDs tics at age 4.5. It started with eye rolling and head turning and has manifested into various tics ever since. She has no history of strep, and we don't have any family history of TS. She is now 6.5 and is about to start 1st grade. I feel that we have tried everything: we saw a naturopath, did acupuncture, chiropractic care, had her allergy tested (strong seasonal allergies and a few food sensitivities caught by the Elisa Test), bough expensive HEPA filter air purifiers, etc etc. I have read every possible book and website on natural approaches to treating TS. We have eliminated the foods that she is sensitive to (including milk, wheat, gluten, peanuts, etc), she has been on several supplements for the past year, and yet her tics are still there. They arent SEVERE per se, but they are very noticeable (especially to me, and to her as well). Right now she has a weird ear-pulling tic, as well as neck stretching, arm stretching, wrist stretching and the wincing/frowning tic. She is a very bright little girl and is extremely outgoing and fun-loving. She is very social and is very talented. In Kindergarten her teacher pointed out that she has a hard time focusing and staying on track at times. She is not hyperactive at all so she would be better classified as ADD. She is a very smart little girl but she can easily fall behind in school due to her lack of concentration, so we have to work extra hard on schoolwork at home. She also has slight OCD (cant stand when I dont shut the car doors hard enough has to re-shut them herself) and some sensory-type issues. For example, she doesnt like the sound of my voice, especially if I use any inflection or excitement or silliness. It REALLY bothers her. Its very strange and its literally only with me.

 

Here are the supplements that she is currently taking:

 

- 1 Multivit

- 1 chewable Vit C 500 mgs

- 250 mgs magnesium taurate (sometimes up to 375 mgs)

- 1 Calcium/mag/zinc supp

- 1 krill oil supp (weve tried fish oil and flaxseed oil as well)

- 1 prebiotic/probiotic combo supplement

- 1 Quercitin 500mgs

- B-Complex 50

- Methyl-B lozenge

- Dr. Weils antioxidant supps

 

I did purchase NAC and ginko, but I am hesitant to give her anymore supplements at this point. My poor child, she is SO sick of vitamins!!!

I have heard that people have had great success with Bonnie Grimaldis supplements. However, I already give my DD a lot of the supplements that she puts in hers-- so do you think it would even be worthwhile switching to her program?

 

I have taken DD to the neurologist a few times and he has recommended Intuniv for her. But since its over $100 per month even with our insurance, he then recommended Tenex, 1mg 2x a day. I have heard great things and terrible things about these drugs and I dont want to go that route unless its absolutely necessary. Also, I have heard that these drugs tend wear off after a few years and you have to keep increasing the dosage. I would hate to start her on them now while her tics are mild/moderate and by the time shes 12 and if she REALLY needs meds, she will have to take a super high dose.

 

I just feel that we are at a complete loss. I feel like we have tried it all and she is still ticking. And the fact that she is only 6 years old, doesnt make me too optimistic that her tics are going to be getting better anytime soon. If you have any thoughts, input, recommendations, ANYTHING, please let me know!!!

 

Thanks in advance!

Ashley

Edited August 9, 2011 by Ashley B

[Familyof5]

Have you tried detoxing? I didn't see any reference to that. My childrens' tics have become very manageable with constant detoxing. Their tics are MUCH worse when they eat gluten so we continue to keep gluten out of their diet. Food additives and artificial sweeteners make their tics worse as well. But there is no doubt that deotoxing is the number one remedy for keeping their tics at bay. We use a prescription drug for detox: cholestyramine, but there are many posts about natural choices for detox therapy.

[chez]

Hi Ashley,

I too am new here, although have been reading some of the various posts for a while, but particularly wanted to reply to yours because your story is soooooo much like mine! ie. .....daughter ...started tics at 4.5yrs, ...1st tic was head turning (came on so suddenly I took her to a medical centre after dinner one evening) ....have tried heaps of things with no improvement .... the car door thing happened with her too! ....etc.

 

My daughter is now 8.5yrs.

Things I've tried (through a lecturer/ex GP at a school of Natural medicine): eliminating sugar, wheat, dairy, adding various vitamin and mineral supplements (cant remember what they all were now). Also it was hard to monitor if anything was working as the tics wax and wane, sometimes waning for several weeks, and then slowly increase again. Then when they build to such a point that I "just have to do something for her", they subside again. Also, the waning would sometimes occur when I was doing NO diet control! I decided that diet restrictions and supplements were putting so much pressure on her (and me) so I've basically given up doing anything! which I feel very guilty about.

 

She's now at an age that she's very aware of it all and can describe some of the feelings she's having when she tics, so I'm thinking of doing some sort of cognitive behavioural therapy, or habit reversal training, etc. I'll certainly be investigating it thoroughly first!! The reason I think there's a glimmer of hope that it may work is that when the car door thing started I decided to try to "nip it in the bud" by a mixture of forcing her to stop it, bribing her with something, and distracting her attention away etc. and it worked! She's never done it since except once, about 12months later, and I immediately put an end to it again. I know it's more of an OCD thing rather than a tic, but there's a lot of similarities between the two.

 

I absolutely think that the key to finding a cure or treatment for TS will be when doctors work out why the waxing and waning occurs! I keep asking myself "what is happening when there are almost no tics for such a period of time?!".

 

Chez.

[Cj60]

Hi,

That does seem like a lot of supplements. You didn't mention brands; are they all "clean" (no additives/artificials)? Did you add them one at a time to see what effects each had? I ask because my son definitely benefits from mg, but recently I was curious and added taurine into his supplements, and the effect was clearly adverse (even though his multi includes a small dose of it already). Also, the multivitamin posts on this forum seem to point to the fact that all multivitamins are not equal, so make sure to supplement a strong, clean one.

 

I would think some sort of test for possible infections (lyme?) might be helfpul. From what I've read on the forums here, they can be there even though there is no readily obvious indicator. If nothing else, by testing you could eliminate it for sure from the list of potential causes.

 

Good luck, and hang in there. If your daughter is happy and bright, well, that's two pretty good things she has going for her!

 

Chris