cara615

One more thing, our son has had a similar history with tics as your daughter. He is 5 but his tics started when he was three and would come and go and would be gone for long periods of time. This past March they came on full force and were severe. So severe that I thought he would not be able to attend Kindergarten. Well, we started the diet changes in May and finally in August when I removed the last of the allergens (dairy) his tics subsided 90%. its been a HUGE change for us and each day gets better.

Is it possible that she is not 100% dairy and gluten free? I ask because we too saw amazing improvement when we removed dairy, gluten, corn and sugar but we did not see it until 100% of the offending foods were removed so even a tiny cracker with dairy in it would cause the symptoms to show themselves. We also did a 6 week antifungal regimen with grapefruit seed extract to kill yeast. This was helpful as well. in addition, we give our son a methyl B complex and NAC (N acetyl cystiene) which is an amino acid. We see a holistic physician and discovered that our son had a corn, gluten and dairy intolerance as well as yeast and a methylation dysfunction. That is why we add what we add as far as supps go. We also go glutamine and probiotic for gut health.

So happy to hear this!!! Thinking of you today!!

For us, we did not see true improvement until we removed gluten/dairy/corn and went low sugar. At first we got my son tested for food intolerences. It came back as severe for corn, moderate for gluten and mild for dairy. I removed the gluten and corn first and we saw a slight improvement. We also did a 6 week regimen of grapefruit seed extract (6-8 drops a day) to kill yeast. His labs came back showing all the markers for yeast. We saw more improvement after he was on the antifungal but then the tics wound up coming back again. So I finally decided to bite the bullet and get rid of the dairy. Within 24 hours his tics dropped to an incredibly low level and now have remained that way for almost a month! In fact, he just started Kindergarten at a brand new school and his tics keep getting less and less as the days go on. So for us it was complete removal of gluten/corn and dairy that did the trick. It think its wise to get your son tested for food intolerances (not allergies) to see what his are and then remove accordingly. Let me know if you need help with gluten free foods, there is such a growing market out there for these types of products that its so easy to go gluten free. I found dairy free harder to do!! I now make all my own snacks homemade for my sons and they are all gluten/corn and dairy free ( low sugar too). Good Luck!

So I removed dairy last Friday (we have been gluten and corn free for 3 months already) and within 24 hours my son's tics reduced dramatically. They stayed that way for 4 days and I noticed a slight increase on the 5th day. I re-examined his diet and realized that one of the items he was eating had dairy in it!! So I removed that too and his tics are at an all time low! Vocals are almost gone and motors are very low and low inensity. I feel like we are making good progress. He is still on 1200mgs of NAC daily, methyl B complex, glutamine and probiotic daily too. We are low sugar and i am beginning to make home made snacks and remove all processed food from the diet. As it is, the processed food he does eat is organic with as little ingredients as possible. His eating habit have changed as well. He is eating all kinds of new foods such as salmon, grilled chicken, veggies, turkey breast etc. I am so happy with these changes and its only been 3 and a half months. its amazing how the body has the ability to heal itself. i just hope things continue on this path.

In our case the ped neuro was only willing to prescribe meds that would have debilitating side effects to my 5 year old son!! I can attest that the natural way is really the best way to go to have lasting results and a healthier child regardless of whether the tics are relieved or not. Treat the cause NOT the symptoms!! I'm not sure why PGell is posting this stuff on a natural and alternative therapy forum??

We removed dairy finally and vocals are down 80%. Still have some motors though but less than before.

i am still giving my son 1,200mgs a day (600 in the am and 600 in the PM) He is 5 and 33lbs. I would start out lower and titre up to the 1200mgs and see if you see results. Then I would consult your doctor to see how high a 10 year old can go. The Yale study gave a max of 2,400mgs a day to children 7-17 yrs old. i did not want to go that high with my son.

LaurenK do you live in a state where it's legal? (I'm not going to obtain any but I'm curious) what type did you use? Indica dominant hybrid by any chance?

Well my physician is a PANS friendly physician so I will ask her about the Cunningham test. Will try to get that done. What does it say that he has had improvement while having the virus by removing dairy? He has had the molluscum for about a month now and we have had 2 periods of improvement (one before and partly during my NY trip and now the past 3 days....

Oh and I added that vit E cream and thought that increased tics but it seems that the tics were increasing even without the cream.

Chemar, this is how it went. After a week on the GSE we saw great improvement in his tics. This was 4 days before our trip to NY. This improvement remained for the 1st week of the trip but slowly and very gradually started reversing during the 2nd week. But even still, it was tolerable while in NY. Once we got back the reversing trend continued with tics increasing in frequency for a week until I pulled dairy. I will look into the Cunningham test. My only issue is with how they treat PANS which is abx right? Wouldn't that just increase yeast and dysbiosis in an already compromised child?

Chemar, this is how it went. After a week on the GSE we saw great improvement in his tics. This was 4 days before our trip to NY. This improvement remained for the 1st week of the trip but slowly and very gradually started reversing during the 2nd week. But even still, it was tolerable while in NY. Once we got back the reversing trend continued with tics increasing in frequency for a week until I pulled dairy. I will look into the Cunningham test. My only issue is with how they treat PANS which is abx right? Wouldn't that just increase yeast and dysbiosis in an already compromised child?

He does have mollyscum right now though which is a skin virus. Not much we can do to treat it. It has to run its course. I guess his immune system is not working as well as it should be. I plan to do more blood work to rule out PANS but for now, diet is the main thing we are working on because if he is having inflammatory reactions to the good he eats, his immune system will be compromised anyway.

No mold, no sickness. Actually he improved while at home and gradually got worse on vacation. Once we came back it was another week before he was severe again. I took him off dairy on Friday and things are so much better. I'm just praying that we are finally on to something here.

Thanks logismum!! We are doing it! 48 hrs + dairy free and I think we have found another piece to the puzzle. Tics are down again today, even more than yesterday. Whew. I am finally breathing.

I had a naturopathic MD tell me to take my kids off dairy at 2 years old. I couldn't do it. They were horrific eaters and needed calories so I used dairy as a crutch to get calories in them. They got many ear infections until we got them both tubes. I should have tried harder back then to get rid of dairy.

Tics are down even more today. 48hrs dairy free...

We have only done a throat culture for strep which was neg but I plan to take more blood to rule it out. Last time we tried, my son was not cooperating doctor agreed with pulling dairy so we are. She also strongly suggested nystatin again - even after 5 weeks on GSE!! So I may try it after we do a yeast spit test just to make sure we still are dealing with a yeast issue. The good news is that his tics were not any more frequent or intense today so maybe we have hit a plateau....

And I don't know if you were just able to handle your sons tics better than I am, but I'm just not the strongest person when it comes to situations like this. I'm trying hard to battle through this but I can admit my faults and lack of patience as well as a low threshold for stress are 2 of them.

I hear you chemar. I'm not going to do anything drastic or put my son at risk. It's a shame that this country is so backwards and would rather prescribe medications with terrible side effects instead of doing more scientific studies on natural medications. I'm not sure the vit E was the culprit because I would have expected the tics to go back to baseline a day or 2 after I gave it to him but instead the tics ramped up even more. I finally decided to stop fish oil and take dairy out of his diet. It's been 24 hours. I'll update on his tic level next week after I give it more time. Thanks and I am asking about marinol. At the doctor right now

How old is your son? Could marinol be given to a 5 year old? I'm thinking of flying to CO to try MM and then driving back. I know it sounds nuts but when you are desperate, anything is possible.

It's like I lost my son. All that is left is constant sounds and spastic movements. No breaks, it's constant thought the day. Thousands of them. I'm losing my mind and am so depressed.

Well I am my wits end. I need relief from this. My son is severe again and I don't know why. We've been on diet and supps for 3 months with not much relief. The relief was very temporary. I'm so discouraged.

Anyone have any experience with this? I'm not talking marinol but the real medical marijuana. Apparently there are parents giving it to their young children for tourettes with much success.