A Hello and an update

[Nan]

HI everyone !

 

It has been a while since I posted. I just wanted to update all of you on what's been happenning with us.

 

As some of you may know, my daughter's tics were mostly manifesting as eye blinking sometimes replaced by throat clearing. I had an allergy test done on her; turns out that she has several allergies . The most severe of them being egg, wheat, corn and dairy in that order. The results came 2-3 weeks ago and ever since I have been following an egg/wheat/dairy free recipe. Her corn allergy was not present on Igg testing ; just Ige. For the first phase,the doctor wanted us to concentrate more on the foods that she was allergic to in both the IGE as well as the IGG testing. I am very happy to report that the results I am seeing are phenomenal. Her eye blinking has now stopped ; she does have some minimal throat clearing . I would say the improvement is atleast 80 % on that.

 

Currently, she is not on any supplements, We are just doing the diet. Since the diet is so new to me, she is just eating limited foods. I have not tried any egg replacer or anything like that though I would like to in the next few weeks. I can see that she will soon get bored of these limited foods that I am giving her now !

 

Caryn and others who said that diet is the major, consistent remedy for the tics - I completely believe you now . From my personal experience, I definitely believe that supplements can only go so far and then it seems to hit a plateau; it is the diet change that brought miraculous relief. I am hoping this upward trend will continue for us . This is just my opinion from my personal experience and not to contradict anyone else who has had very good results with supplements.

 

And another thing that I noticed after doing the diet is that her seasonal allergies are much better too ! I asked the environmental doctor about this and he said that he believed that wheat and pollen allergies go hand in hand and many of his patients have found they could handle the seasonal allergies much better when they cut off wheat or gluten from their diet.

 

I am looking forward to posting again and have definitely missed you all !

 

-Nan

[bmom]

That is great to hear NAN! My question for anyone out there that might know on the diet end is, My sons tics seem to change and there are some times when he has no tics at all. So, could this still be related to a food allergy? If it was a certain food, would they stay the same and be consistent? Has anyone had experience with diet helping tics that change and go away????

[Chemar]

so glad to hear the diet modification is working Nan

 

Bmom, we tried all kinds of food eliminations ...... but my son with Tourette Syndrome does NOT have food allergies other than to chemical additives, and so we did not see relief with cutting out wheat/gluten/corn/dairy .....however we did see the major change when we supplemented the things he was deficient in. As I have mentioned before, this did not cure his TS and he still waxes and wanes and with varying tics...but the difference in severity and frequency is like night and day from before

 

However, for those who do have food allergies or intolerances or sensitivites...dietary change to eliminate those makes absolute sense, and has been anecdotally proven effective in reducing or eliminating tics by the many testimonies on this forum ........... great to see that your child is now added to those, Nan

[CSP]

That is great news, Nan, I hope this will be a hugh piece of the puzzle for you.

 

bmom, I'll let you know how my son does on the gluten free diet.

 

Last week I noticed he was not doing good and was thinking he was going through some sort of die off. It started 5 days or so off the gluten. He is doing much better this week so far.

 

I have not taken away the casein yet, did not what to send him into shock.

 

C.P.

[faith]

Nan,

What kind of allergy testing was it that you are referring to and what type of doctor did that, a regular allergist? How was it done. So you are saying it showed things like corn that were NOT on the Igg testing? Had you done that (the Igg?). If so, did you eliminate those things before this? So you have eliminated wheat, but not all gluten (other grains)?

 

Also, did your daughter show any symptoms of allergy other than tics? My son is going through a major eye blinking right now, and I have no handle on this stuff at all, one would think I just fell off the turnip truck, that's how confused I am.

 

Thanks,

Faith

[Nan]

Hi Faith,

 

I made an appt with an enviromental specialist who did a blood test for detection of IGe antibodies (immediate reaction to allergens) and IGg antibodies (delayed reactions ).

 

IGe test showed sensitivities to egg,wheat, corn and dairy ; these were the major offenders.

IGg test showed sensitivies to egg,wheat and dairy (no corn).

 

I did not eliminate any food until I got the results 3 weeks ago. After the results showed the above sensitivies, I have eliminated egg,wheat and dairy from her diet. I do buy the gluten free bread for her. We are not 100 % corn free .

 

My daughter has major pollen/tree/ragweed allergies; apart from this and the tics she does not show any other symptoms.

 

I am sorry to hear about your son's eye tics. Is this new ? Let me know if I can answer any more questions.

 

-Nan

 

 

Nan,

What kind of allergy testing was it that you are referring to and what type of doctor did that, a regular allergist? How was it done. So you are saying it showed things like corn that were NOT on the Igg testing? Had you done that (the Igg?). If so, did you eliminate those things before this? So you have eliminated wheat, but not all gluten (other grains)?

 

Also, did your daughter show any symptoms of allergy other than tics? My son is going through a major eye blinking right now, and I have no handle on this stuff at all, one would think I just fell off the turnip truck, that's how confused I am.

 

Thanks,

Faith

[myrose]

NAN I am so truly HAPPY for you. I hope to be right behind you soon! How different your world must be as well as your daughters. Its stories like this paired along with all these wonderful people on here that keep me going even when I feel so low that I want to maybe GIVE UP and go with the prescription stuff just to have a normal day again. BUT I WON'T.

Headed to a NEW DOC on the 30th!!!!!!! Feeling very good about this! Wish me luck! I also wish you and your daughter continued success!

 

And PLEASE PLEASE keep continuing to update!

[faith]

Thanks Nan,

just to clarify, was there a name for the kind of Ige, like was it RAST or scratch test? They just took blood and then tested the foods in the lab? What kind is gluten free bread?

 

The eye blinking is not exactly new, he's definitely had it before, but he has gone long times without it, and now it has spiked up the last month or so, for all I think I'm doing right, something is not right, so I'm always investigating. I'm thinking salicylates again, because since the fruits didn't show on our Igg, I give them now way more than ever, but I am having suspicions now. I don't know, maybe tics are just changing around, his vocal is on the downside.

 

Faith

[Debbie1]

Nan,

 

I am so happy for you! I don't post a whole lot, but do read here almost daily and am so happy for you that you have found what works for you.

 

We have also found that dietary changes make significant improvement. I hope that one day all of the doctors will catch on to this idea and recommened it to their patients!

 

Debbie

 

-Nan

[Nan]

Myrose,

 

Thank you . I have been out of touch with the boards for some time and trying to catch up. I am not sure if you are planning to meet an environmental specialist , but hope that you and your daughter find the path to recovery from tics and her other symptoms pretty soon. Best of luck to you and your family !!!!

 

-Nan

 

 

NAN I am so truly HAPPY for you. I hope to be right behind you soon! How different your world must be as well as your daughters. Its stories like this paired along with all these wonderful people on here that keep me going even when I feel so low that I want to maybe GIVE UP and go with the prescription stuff just to have a normal day again. BUT I WON'T.

Headed to a NEW DOC on the 30th!!!!!!! Feeling very good about this! Wish me luck! I also wish you and your daughter continued success!

 

And PLEASE PLEASE keep continuing to update!

[Nan]

Hi Faith,

 

It was the blood test like RAST. The gluten free bread that I get is made from brown rice; not sure if this answers your question. I also do flourless spruted wheat bread and she seems to tolerate this fine too. Seems like she is able to tolerate sprouted wheat and not wheat. Not sure why though.

 

-Nan

 

Thanks Nan,

just to clarify, was there a name for the kind of Ige, like was it RAST or scratch test? They just took blood and then tested the foods in the lab? What kind is gluten free bread?

 

The eye blinking is not exactly new, he's definitely had it before, but he has gone long times without it, and now it has spiked up the last month or so, for all I think I'm doing right, something is not right, so I'm always investigating. I'm thinking salicylates again, because since the fruits didn't show on our Igg, I give them now way more than ever, but I am having suspicions now. I don't know, maybe tics are just changing around, his vocal is on the downside.

 

Faith