New Mom Seeking Advice from Old Timers

[cherylcam68]

Hi All! I am a first time poster, although I've been lurking for a while. My six year old began ticcing this summer as soon as school got out. We have an appt with a ped neurologist Aug 19 but after reading what others have experienced I am not expecting much. I got the Sheila Rogers book and was immediately encouraged. However, after doing some food eliminations, introducing supplements, etc the ticcing is basically the same. Has anyone else experienced this. I guess after reading the book I was expecting big changes but none yet. How long does it typically take to notice changes after introducing supplements and dietary mods. I am also a little worried about the supplements I have chosen and the dosages I'm giving. Right now we are doing a kid's multivitamin, a kids Omega 3/6/9 blend, Vitamin c (500 mg), vitamin b6 (100 mg), and magnesium (250 mg). These are adult sized dosages I know so I am a little worried that I am overdoing it. Does anyone have any inight into other suppements that might be beneficial? I am interested in the amino acid component but don't know where to start there. Any advice from more experienced TS parents would be greatly appreciated! My husband thinks that I am now obsessive about finding treatment but if there are things we can do to make it better than I am willing to do whatever it takes.

[Pudgeo]

Hi, I am a PANDAS Mom..but I felt the supplements you started with were good! I will warn you that your pedi neuro may be a "traditional Dr" and want to prescribe a med for the tics. If I were you I would read up on the meds(if that's what you want to do) so when you are in the appt you are ready(so they don't throw one at you, read about the side effects!!)

ALot of the meds zombie the kids out!

..My pedi neuro is very anti-biomedical (even though she advocates the ketogenic diet for seizures Hmmmm) and told me all the supps & diet changes I was doing was meaningless. You never know..your pedi might be a little more open minded?

Could your son have been exposed to strep??? Have you run any ASO titers or anti-Dnase test??

Good Luck! Sarah

[lurker]

Hi,

 

I am a little concerned about the b6. I'd suggest half of that until someone who knows more than I do can advise you.

 

CHERI, help!

 

 

Tami

[Chemar]

Hi and welcome

 

yes, I agree the B6 is high especially for under 12 yo. and also as it is likely already in the multi with other Bs

 

 

it is honestly a hit and miss with supplements until you find the root cause of the tics. If it is PANDAS related (tics from strep) or candida, allergies etc then the supps, altho all good, may not have much effect until the underlying issue is first treated.

 

may I ask if your child had any vaccinations or illness prior to the onset of the tics?

new house? paint?carpet?car? woodwork?

any family history of tics?

any allergies?

[cherylcam68]

Thanks for the advice Cheri. I will definitely decrease the B6. As for the root cause of the tics...it is a mystery. They just came out of no where at the beginning of summer. The only factor I can think of that is different is swimming in chlorinated pools, which we are doing quite a bit of these days. We have no known allergies, no family history, and no other new things in our life. However, I am considering having some allergy testing done if I can convince my dh.

[patty]

cherylcam68,

 

IMHO, before supplementing, i would suggest you finding the root cause first. It is hard to supplement correctly w/o knowing the underlining issues. It will save you $ from trying various supplements. Also, not all supplements are of high quality and bioavailable, and watch out for dyes and artificial flavorings. You said there are no known allergies, consider delay sensitivities in food and or environmental issues.

 

You said the tics came out of nowhere. You may want to think back for clues and they may be very subtle, like a light persistent cough or sniffling... I say this because in looking back there were signs that i did not recognized and i ended up giving my son unnecessary allopathic medicines.

 

In the meantime, you may want to look for triggers. Since swimming is the only new activity, maybe your child is sensitive to chlorine in the pool. Also, cut out any food colorings & preservatives, artificial flavors & sweetner, MSG and HFCS and see if it makes a difference.

 

I think finding out your child's allergies is a good starting point, as many of us here eventually get the allergy test done to get better directed.

 

Good luck.

 

Pat

[CSP]

Cheryl,

 

Welcome I wanted to let you know I jumped in full force with my son and I did not see any results until I stopped, started over, and went real slow. I understand that feeling of wanting to help so bad, you would give your right arm if it would help. When I look back sometimes I don't know how I was able to pick up this cross everyday.

 

I also wanted you to know my son's first tic (eye) started when he was at the pool at age 8 or 9. I did not know anything about tics or TS. He is now 14, and had his explosion at 12yo.

 

The eye tic he had that first showed up one summer at the pool came and went, so I still for a few years was clueless until shortly after he turned 12. That is when I knew something was not right with him, and I need to do what ever I could to keep him off med.

 

My son does not do well introducing mult. vit. at the same time, if that is helpful info.

 

God Bless, and I do hope you find peace real soon, and this is a passing thing for your child.

CP

[QsMom]

Cheryl,

 

Welcome to ACN!

 

My son started ticcing in the Spring of last year. He was almost five at the time. Last year, we had a rough Spring and Summer of constant ticcing - motor and verbal. He also had very dark circles and digestive issues. He also was sick a lot, which I beleive was from an impaired immune system. It took me about four months to really nail down what his triggers were. For him, it was a combination of gluten and casein, dyes and sugar, ect. We implemented Feingold and went organic and are now also avoiding corn. We confirmed that he was "allergic" mold, so being mindful of those, have cleaned up his room. We have a very successful year since last September of light to no ticcing.

 

We did encounter what I would call an "episode" that I have isolated as chemical expose to the pool. We joined a pool and spent several weeks at the beach and my son developed a strong head tic - like we were seeing last summer. We have been out of the pool now for 3 weeks and the tic is still there BUT it is being less in frequency and intensity. I'm not sure that anyone but me would notice at this point.

 

Here are some things to think about -

- What kind of multi-vitamin are you giving your son? Many of them are loaded with extra things. I have had to change my son's a few times this year based on his food sensitivies.

- Try Epsom salt baths to detox if you go to the pool (or even if not - these are great)

- Is your child exhibiting other symptoms- i.e. digestive issues, dark circles under eyes, low energy, restless sleeping?

- Is he wearing a life jacket at the pool? Could the plastic be effecting him?

- Could the sunscreen be effecting him and not the pool?

- Your Omega Supp - is it fish oil? Some kids can not tolerate fish oil and it makes them tic more. My son is fine with it and I can see a difference in his academics now that he has been taking it for several months.

 

We have been at this now for 16 months and I have to say, my son has come a long way. With the exception of the "episode" we have just had, he has a VERY mild to no tics year. His vocals went away in September and have stayed away. His overall health is much better- dark circles are gone and he has not been sick (knock on wood) once since March.

 

Good luck ...

[lynnie1264]

Hi. I'm wondering if having another person with Tourettes in my family {my older brother} makes any difference when trying to do food elimination and supps etc. I ask this because I noticed someone asked if the cause of the tics were known, eg if there is a family history.

we only got this diagnosis a couple of months ago, and I'm trying to get allergy tests etc done soon . Also regardless of wether there are allergies is it still accepted that there are certain things these kids should avoid anyway? Like, the yeast, artificial colours and flavours.

At this stage I'm still abit overwhelmed by it all.

Thank you. Lyn.

[cherylcam68]

Thanks to everyone who replied to my post! Having this support system is really helpful. Everyone gave such great advice which is (hopefully) helping us to solve this puzzle.

 

Cheryl

[Dedee]

Looks like you have gotten some great suggestions. I just wanted to offer input on the omega 3/6/9. The doctor we saw for our child's PANDAS suggested that we only supplement with Omega 3's. One of the main issues is the imbalance of omega 3's to omega 6 & 9 (mostly 6's). Most diets are naturally high in the omega 6's & 9's but low in 3's. So the suggestion was to be very careful to only supplement the omega 3's. Of course, all children are different and the underlying cause is the most important issue to address. I agree with a another post disussing the fish oil. Some children do very well with it (mine does fine), but other children can't tolerate it and need to get this supplementation from a different source. Good luck on your journey. Take your time and be kind to yourself.

 

Dedee