TS son getting worse

[nola]

Hello everyone,

 

I just need to vent because I don't know what else to do. I started writing about my son (7 years old) in October. He's getting worse. His vocal tic is so bad that it's affecting his speech. He can barely get a sentence out without ticcing. It's like a really bad stutter. I don't know what else to do. His humming (more like breathing in and out) and throat clearing are so intense and loud. There's so much force behind it and I'm worried that he's going to hyperventilate. Does TS really get this bad? What do I do? Will it be bad forever? Can someone share a success story? I need to hear something good.

 

Thank you,

Nola

[patty]

So sorry that your son's vocal tic is interfering w/his quality of life. I don't know much as about your son's supplements, but i know fish oil & mega dose of probiotic are big triggers for my son.

 

Any change in his diet? Taking any medications? Perhaps,the increased in mold in winter may be another trigger.

 

If your son has allergies & asthma, his tics may be very well related to it. Fixed the inflammation and you will see improvement.

 

Hope that's helpful.

 

Pat

[mommyfor4]

Hi Nola,

I know where you are at, we were there a few years back. There were times I needed to retreat to my bedroom to cry and then gather myself back up. Our ds tics are mainly vocal and I can say three years down the road we are gaining on them. It has been a constant journey and we are still on the look out for triggers but a clean diet, a great multi, lots of epsom baths and Natural Calm have been our biggest aids. For us wheat, dairy and soy were big players in his tics. He is also very sensitive to chemicals...all household cleaners, laundry soaps, dishwasher soaps, handsoaps needed to be natural or as close as possible. No perfumes, no scented candles etc. There is hope! I never in a million years believed we could lower his tics to where they are today but it did take time and vigilance. Christmas is full of triggers...candles, the foods, peoples perfumes, hairsprays etc. not to mention it is a time of gifting viruses back and forth. Hang in there...try to minimize the potential triggers you can control, keep the house well ventilated or use an air purifier for the ones you can't. For us it's about loads of pure water and evenings of epsom baths and expecting that there usually is a rise at this time from excitement, hidden triggers, and extra sugars. Best of luck and Merry Christmas (Happy holidays?)....

 

Megan

[nola]

Thank you all for your suggestions. My son is still ticcing but it isn't as intense as late December. It seems to come and go with intensity. We decided to try the Natural Calm (1/4 tsp. in morning, 1/4 tsp. at night). We are also trying L-carnitine (250 mg./daily) and Epsom baths at night. I'm not sure if it's working but his tics decreased a few days after taking Natural Calm. Big Al mentioned that many people try fish oil but for some tics may worsen. I'm wondering if I should give it a try. If it doesn't work for my son, what should I expect to see and how quickly will it affect him? If it is working, how long before we see benefits? If it triggers tics, will stopping the fish oil quickly relieve them? What would be an alternative to fish oil if it doesn't work? What's the dosage? Sorry for all of the questions. I'm doing this all myself. I don't have a doctor who specializes in alternative medicine so I'm taking this slowly. I don't know where to turn to for medical advice.

 

Patty, you mentioned that fish oil and probiotics triggered tics in your son. Is probiotics something I should worry about?

 

I really appreciate this site. Thank you!

 

Nola

[mommyfor4]

Thank you all for your suggestions. My son is still ticcing but it isn't as intense as late December. It seems to come and go with intensity. We decided to try the Natural Calm (1/4 tsp. in morning, 1/4 tsp. at night). We are also trying L-carnitine (250 mg./daily) and Epsom baths at night. I'm not sure if it's working but his tics decreased a few days after taking Natural Calm. Big Al mentioned that many people try fish oil but for some tics may worsen. I'm wondering if I should give it a try. If it doesn't work for my son, what should I expect to see and how quickly will it affect him? If it is working, how long before we see benefits? If it triggers tics, will stopping the fish oil quickly relieve them? What would be an alternative to fish oil if it doesn't work? What's the dosage? Sorry for all of the questions. I'm doing this all myself. I don't have a doctor who specializes in alternative medicine so I'm taking this slowly. I don't know where to turn to for medical advice.

 

Patty, you mentioned that fish oil and probiotics triggered tics in your son. Is probiotics something I should worry about?

 

I really appreciate this site. Thank you!

 

Nola

 

Hi Nola, I know you were asking Patty but I wanted to pipe in. My son also was triggered by fish oil and probiotic supplements. He is fine with Kefir in small amts. as a substitute. For us we say a big increase in tics following the probiotic but they did wane once off them for a few days, the fish oil was not as extreme but did increase his throat clearing tic. Some have mentioned flax oil or krill oil as substitutes but I can not speak from my own experience as I have not added either into his diet as of now but will probably add flax at some point in the future. Was the increase possibly due to a virus? any signs of sickness? Our son increased over Christmas due to...well it was Christmas! but he also increases if fighting a virus. Have you started a good multi yet? We found it most beneficial.

 

Best wishes

 

Megan

[patty]

Nola,

 

I can't speak for all, but my son, as well as others on this forum find that fish oil & probiotic aggravate tics. In my son's case, his vocal tic.

 

The only way to eliminate my son's tic was treating it via NAET. Apple cider vinegar also triggered my son's vocal tic.

 

My son can consume yogurt & kefir w/o problems.

 

Pat

[nola]

Megan, I have a multi-vit but haven't been consistent. I decided to take him off the probiotic. It's been a few days but tics are still bad. Tonight was bad. Do you think I should try flax or krill first? If he reacted badly to the fish oil, would it get better once taken off of it? I feel like this is a science experiment. I've heard people mention NAET but I am not familiar with it. Does anyone know a NAET specialist in the Bay Area (Oakland, Berkeley, CA)?

[mommyfor4]

Megan, I have a multi-vit but haven't been consistent. I decided to take him off the probiotic. It's been a few days but tics are still bad. Tonight was bad. Do you think I should try flax or krill first? If he reacted badly to the fish oil, would it get better once taken off of it? I feel like this is a science experiment. I've heard people mention NAET but I am not familiar with it. Does anyone know a NAET specialist in the Bay Area (Oakland, Berkeley, CA)?

 

I can't speak for your son but ours tic's decreased fairly quickly once off the probiotics and fish oil (within the week). Will your son eat salmon? As of now that is how we are getting the omega's into our son and and I cook with an omega rich oil ( mix of flax, grapeseed and extra virgin olive oil). I personally would try flax only because I am more familiar with it and it is easier to find but others might know more. I think it was BigAl who has a post regarding krill, maybe check that post? I do believe a good,clean multi very consistently was a huge help for us. Have you tried a food diary. Is there a certain food he has had alot over Christmas etc. that may be the culprit? Just to brainstorm: new candle in house, different toothpaste or laundry detergent? The reason I ask is just this week I realized I had bought a dish soap with hand conditioners in it (I always by natural) and sure enough once I removed the offending not natural soap one particular bothersome tic disappeared, reminding me why I went all natural in the first place! Does he have any swollen glands? Our son is prone to swollen nodes in his neck so we use castor oil to rub his neck at night and seems to be beneficial as it aids the lymphatic` system. Please keep me updated and good luck in the search.

 

Megan

[Elizabeth_reasha]

Hey Nola,

 

I have a brother with vocal tics/TS. A couple of years ago my mother was in the same place you are now, it was terrible. If my brother wasn't home schooled I don't know how he would have functioned in school. Anyway right now we seem to have a handle on the tics, he is on Trace minerals, multivitamins, stress relief pills, and a no wheat/dairy, no refined sugar, no artificial preservatives or coloring diet. And I know that all sounds extreme but unfortunatly it seems necessary. And the truth is its hard on us to give them all these things all day and regulate thier diet, but it's worth it to help your childs quality of life. It's so sad to see a child with TS, they are truely suffering. By the way it took months to finaly get the right dose of all these things for him to be symptom free. We would see improvement with the addition of each supplement, but getting the dose correct was key. We also saw great results using a b-complex and trace minerals just for his vocal tics, the other things we are giving to treat OCD and obstinance disorder.. Its mind blowing when you start researching all the nerological disorders that can appear in a child.. Good luck.

[nola]

Thank you for your responses. It's so difficult trying to figure out what I can give, what is safe, and how much to give. Who do I consult? My son's neurologist and pediatrician don't have alternative suggestions besides medication. What kind of specialist do we see? Is there any way to get insurance coverage?