please help my child with severe tics

[kuma]

My son is 9 and was diagnosed with tic disorder when he was four or five years old. At that time, the symptoms were very mild hard to notice and only there when he got a cold and fever, the symptoms disappeared when he recovered. During that period, we saw a neurologist and was told that we should just ignore the tics and carry on the normal life. A few months ago, he ate a lot of sugar and chocolate because of Halloween. The result seemed to be a sudden outbreak of symptoms with severe vocal twitches similar to snorting many times per minute. We got panicked and immediately contacted the doctor and once again we were told to continue to monitor him. We knew we had to do something so we read a lot of related articles and cases on the Internet to find help. At that time we came go realize that many things were on the big no no list such as high-sweet caffeine foods. This situation last for more than a month and we adjusted his diet by adding more veggies and control electronics, then the vocalization slowly disappeared, but the situation became worse. Instead, he nodded, cleared his throat, face grimacing, neck jerking, waved his hand, kicked his leg, and even repeated a syllable or meaningless word. We have all the possible symptoms of Touretts. These symptoms appear repeatedly and alternately, and his temper has become very bad and unreasonable. In the past few months, we have also tried Chinese herbal medicine, acupuncture, massage, and diet adjustment. But none of them seem to work very well. Until two weeks ago, a friend gave him a milkshake, he hadn’t had any sweet drinks for a long time. I let him drink a little. As a result, he had the worst symptoms ever, the whole body twitches including twisting shoulders, twisting body and skipping. As a mother I had a meltdown, I just can't bear to see him being tormented like this and I desperately wish someone could stop all of this, and then I accidentally saw the Trigger book and quickly bought it online and read it. Many cases in the book mentioned that gluten free diet would be of great help, so I also started to try it. A few days later, the amazing effect was obtained. The previous body twitches that had made people break down were significantly reduced with some mild twitches from time to time. Just when I couldn't believe the results that I had found the right direction, reality made a joke with us again. It didn't take long for his tic symptoms to begin to appear again. Although there wasn't the most severe body tics, all other tics started to resurface. I fell into big confusion. Why is this happening again? Did I miss something? I really hope to find any information here that might help us. 

[Sheila]

Hi Kuma, welcome to the forums. I'm glad you wrote. I know it's really hard to watch your child go through so much. 🙁 

It seems you've seen some connections with foods at times, and have tried different adjustments.

Could you please let us know what diet he is currently following?

Also, do you have a family history of allergies? Or of sensitivity to chemicals, like perfumes or gasoline smells--more than typical?

I'll look forward to hearing back from you. 

[kuma]

Hi Shiela, Thanks for the prompt response. There's no allergy nor the tic history run in both me and my husband's family. The only thing I can think of is when my son was about 8or9 months old he fell from a high bed directly onto the hardwood floor facing down caused big brusies on his forehead, and the cat scan was performed at that time which showed everything ok, dun know if this has something relates to his tics.

He's currently on a gluten free diet and we avoid anything that contains caffine, artificial sugar/flavor, food coloring, synthetic additives, preservatives. It is hard because nowadays these things seem to be in everything we eat, but we are doing as the best as we can. 

I just got him referred to an allergy clinic, I'm hoping to get an allergy and food intolerance test done soon.

[FraggleRed]

We started a gluten free, dairy free, soy free, egg free, sugar free, no artificial flavours /colours diet on February 20 of this year. At this point my dd had been ticcing for 3 to 4 weeks. We had a couple of her worst days AFTER her diet changes. It was disheartening to say the least But we persevered and her tics are now 99% gone. We’ve since reintroduced eggs and I’ll be trying soy next. She will always be gluten free however. I should also add nightmares and stomach pains and joint pains are also gone. Don’t give up!

[Sheila]

FraggleRed, it's wonderful you had good results after your significant efforts. It's so great the nightmares, joint pains and stomach pains are gone also! It does take perseverance, as you say. Thank you for sharing your encouraging message.

Kuma --I'm glad you have a referral to an allergy clinic. (And don't forget to check for milk, after the milkshake reaction --if that was indeed the actual trigger at the time and not just a coincidence). It can be so helpful to have some professional help in sorting things out. And remember that if needed, approaches can go beyond diet. I hope you'll keep us posted! 

[MLee]

Kuma

Have you tried removing dairy as well? We removed dairy and gluten and found it helped reduce tics. We also removed eggs as our child had sensitivities.  And sugar is a big trigger. 
 

Also, we went to an alternative doctor and had a stool test done (GI Map is a good one) as well as food intolerances blood (finger prick) done.  It helped identify problem foods we should remove and the stoool test showed some gut issues we needed to address. Some people like the OATS urine test as well. 

Testing along with working with an alternative doctor has helped us as we heal our child. Need to get inflammation down, heal any infections the tests indicate, remove foods if there are any issues, use natural household products (no scents) and work on healing gut with your doctor’s help and recommended protocol. Environmental allergies can also play a role as can mold. The doctor will help guide you. Wishing your child continued healing.

[Sheila]

Those are really good insights, MLee. If you have time, please let us know how your doctor has you addressing the gut issues. 

[kuma]

On 4/24/2021 at 3:12 PM, MLee said:

Kuma

Have you tried removing dairy as well? We removed dairy and gluten and found it helped reduce tics. We also removed eggs as our child had sensitivities.  And sugar is a big trigger. 
 

Also, we went to an alternative doctor and had a stool test done (GI Map is a good one) as well as food intolerances blood (finger prick) done.  It helped identify problem foods we should remove and the stoool test showed some gut issues we needed to address. Some people like the OATS urine test as well. 

Testing along with working with an alternative doctor has helped us as we heal our child. Need to get inflammation down, heal any infections the tests indicate, remove foods if there are any issues, use natural household products (no scents) and work on healing gut with your doctor’s help and recommended protocol. Environmental allergies can also play a role as can mold. The doctor will help guide you. Wishing your child continued healing.

Thanks for all the tips. I've tried removing milk before and didn't make any difference so we continued to let him have that. But I never thought about eggs maybe I should try for a few weeks and see if it works. About a week ago my son started to have vocal tics again and the interesting part is that most of the motor tics became not much noticeable, the vocal tics have been up and down, but today is by far the worst alsmost nonstop all day long. 

[MISSY81]

Hi @kuma

how are things now with the tics and the diets etc?