vocal tics increase..please help

[Guest Guest_lawsmith]

I am deep in worry right now. My son is 9. Diagnosed in April with TS. His tics have been quite mild. Mostly vocal, alot of humming, throat clearing, nnng sound, whimpering. A breathing tic. His motor tics are very infrequent head bobbing and shoulder shrugging and arm jerking. All have been pretty mild and not noticable by people except family.

 

All summer his tics were so low. Virtually non-existent. About 1 week before school started he started humming again. I assumed this was due to school starting soon and he was a little nervous ( He is an A student and usually loves school.)

 

He caught a cold 4 days ago and his tics went through the roof. He is constantly humming tunes, grunting, following each sentence with the nnng sound. He is hyper-active which he has never been. Most upsetting is he is screeching. He did this at the store while we were shopping and my heart sank, because he hasn't had vocal tics in public at all. I new right away it was a tic. He started screeching at home and came to me and said, "my body wants to make this sound".

 

He is on Labor Day break and will return to school on Tuesday. I am so afraid of what is going to happen if he starts the screeching tic at school. I met with the teachers before school started and told them he has Tourettes and it has been quite mild so far.

 

Sorry this is so long but I can't stop crying I am so afraid for him. He is such a wonderful boy and so bright and easy going I don't want school to turn into a nightmare for him.

 

He is seeing a narutopath and is being treated for mercury and bacteria. His yeast is fine. I'm going to do the pyroluria test asap and start him on the bonnie supplements. I have cut out almost all sugar, wheat is not an issue, nor dairy

 

What else can I do!

 

lawsmith

[Andy]

Your posting was not to long and I have used this site myself to release my own pain. Colds always hit my son hard as a trigger and it could take weeks for him to recover. As for testing for other triggers that could set off tics, I suggest looking up the posts that Claire and Chemar have started. There is no history of TS in neither my wife's or my family so this whole thing was a shock for us and leaves us to believe that our child was infected with either a bad vaccination shot or a lingering illness that has yet been detected. We view this as a long battle for our son to regain his health with no quick solutions. We have had our peaks and valleys and still might but I want you to know that the natural treatments that we are doing is doing wonders for our son and I hope the same for yours.

[Heather]

Hello,

 

I have not posted in awhile since it has been a busy summer for us but I feel your emotional pain as I was going through the same thing last fall. I spent every night crying. My son was experiencing a loud snort every 5 seconds. He is also a very bright and easy going child so it was breaking my heart to watch this happening to him. Since that time we have had him tested for yeast and heavy metals and he has been treated with supplements for both. The last step of the protocol under the direction of a naturopath was supplementing with B6, zinc, and a cal/mag combo. Since we have started this supplement his tics have virtually stopped.

 

During this process (10 months), he had 2 viruses at which time his tics worsened. My naturopath's explanation is that when they get infected with a virus, their immune system is so supressed the tics become more rampant.

 

We started the B6, zinc and magnesium at the end of July and since that time we have had a dramatic reduction. They had been minimal before this time and now they have almost stopped. About 2 weeks ago they were starting to resurface. He had been having some forbidden foods and I thought that was the reason they were coming back. Then I found out the cal/mag supplement I had been giving him had mostly settled on the bottom and what I had been giving him was greatly watered down. Even shaking it didn't help because it had settled rock hard. I didn't realize this until the plastic bottle was empty. Anyway, since Tuesday of this week we have started a new bottle and within 4 days his tics have virtually stopped again. I do believe it is the magnesium supplement that has worked wonders for him.

 

This week I have been typing in "magnesium, tics, tourettes, etc." into the search on yahoo and have been reading some pretty amazing things on the importance of magnesium in controlling tics. Since you said that you are going to try Bonnie's supplements I am sure you have read her reports on the importance of magnesium.

 

Also, if you ever look at Dr. Jacqeline McCandless's book "Children with Starving Brains", the primary supplements she recommends starting with are B6, calcium, magnesium and zinc, along with other antioxidants like Vitamin E and C and selenium.

 

We also have no Tourettes in the family and I feel it has been years of damaging toxins that have led to my son's tics.

 

I pray for your son's quick response to supplements and hope that you will keep us up to date on his progress. I am going to start posting more regularly and if you have any questions, feel free to ask. As Andy said, Chemar and Claire are on here regularly and have amazing knowledge as far as supplements.

 

Heather

[Claire]

Lawsmith,

 

Andy and Heather have given you great input. My first and best thought is: 'this too shall pass'. I believe this because you are obviously dedicated to learning and are taking steps with a supportive professional.

 

Additional thoughts:

 

I am glad you are getting pyroluria checked. It goes up with illness (e.g. a virus) and symptoms would worsen as a result. Of course for some tics simply worsen with illness, and this may not be for you but it sure is an inexpensive way to find out.

 

It would help if we knew what else your naturopath has done with your son. e.g.

Have you had food allergy testing done? How do you know wheat and dairy are not issues? Did your naturopath run IgG tests or did you do an elimination diet? If it is due to your never noticing a reaction, then I would consider testing or doing an elimination diet. We never noticed any reactions to either wheat or milk, but he tested positive, and removal made a big different in his fidgetiness--and reintroduction made it obvious they were indeed issues for him.

 

This won't help now, but for the future: If you know he is more reactive when he has a cold, then if you haven't already, consider giving him zinc lozenges (yes it needs to be lozenges) and echinacea at the FIRST sign of a cold (along with water and kicking him into bed right away). If you will search on this site for the two, you will see that double blind studies show they make a difference in the severity and length of the cold. (I think it is this site). http://healthinfo.healthgate.com/GetConten...&chunkiid=33802

 

This makes a difference in our house. Bronchitis used to come with every cold and then antibiotics. Now at most sniffles last a day or two.

 

Sorry for your pain and worry for your child--we have all been there. If he still has his cold, I see nothing wrong with keeping him out the extra day. At 9 years old, a day of school isn't a big deal. The more rest and healing, the sooner this will pass. I would be very surprised if this new was permanent.

 

Finally, if you believe in a higher power, I hope you call on Him to guide you and to give you peace. We have a thread Ronnas started, and I will bump it if I see it. Most of us feel that God really helped us through this. Certainly if your beliefs are different than this, then I hope at least you have friends with unconditional love who will give you support. And we are here too.

 

Claire

[Guest Jennifer M]

Heather,

 

I read your response and it sounds like you are using a liquid form of cal/mag. I have used the cal/mag. tablets before-the ones recommended by the Bonnie's plan. I was curious about the name brand you used and where you bought it.

 

Thanks,

Jennifer M.

[Guest Jennifer M]

lawsmith,

 

I have too felt your pain. Last week I could barely talk to someone without crying. I was getting worried about myself! To me, it is in a sense a grieving feeling-if you've ever lost a loved one. I find this forum to be a sense of comfort. I hope you do to.

 

I had read in the threads that some people used acety l-carnitine for vocal tics. I have not tried it and would like to know more. Are the effects immediate? Do you use this long-term?

 

I will be praying for you and your family. I know this is so painful and so hard.

Jennifer M.

[Guest Guest_lawsmith]

Thank you all for your support. Since my son started having tics last March I have done so much research into how to help him. But this condition has hardly bothered him at all until now. His tics were so mild he said he wasn't bothered by the tics. We even laughed about them every once in a while. It is pretty funny when he says Momnng instead of Mom.

 

I started slowly "treating" him by eliminating junk (I have always been the "healthy mom" in the neighborhood anyway), having him allergy tested (he is allergic to mold, trees, dustmites, ragweed, etc. but no food) putting a hepa filter in his room, never giving him any decongestant/antihistamine, and seeing the naturopath. I felt this was enough for now. I didn't want to turn this kids life upside-down for something that wasn't bothering him that much. Sometimes a parents need to fix something can be worse on the child than the actual condition. I have heard of the "no screens" thing. This may be a last resort. My son loves science and watches the weather channel and the discovery channels alot. How can I tell a kid he can't watch science on tv?

 

Anyway, I will send him to school on Tuesday. My son is a twin, and his twin sister is great about watching out for him, telling me how his tics were ( he almost never tics at school anyways) I know she will tell me how it goes. And his teachers are great too. If he gets worse I will be asking for advice on how to brooch this with his peers. I figured, everyone has something in there body that doesn't work right from time to time. Asthma, diabetes, even wearing glasses. He has this.

 

I was thinking of an idea. Has anyone ever been able to "save a tic for later" I thought this may be a way for my son to hold off on a loud tic. I know he must suppress his tics at school because he always has more when he gets home. He can certainly screech to his hearts content at recess and they get two recesses a day.

 

Thanks for listening. I feel a little better.

 

Lawsmith

[Guest Guest_lawsmith]

One more thing. My son is 9, weighs 85lbs (yes he is a big kid ). How much b6, zinc and cal/mag should he take and in what form? Also, what is the best lab to do the pyroluria test through.

 

Thanks,

lawsmith

[Claire]

Lawsmith,

 

Tics can worsen with age, and I remember reading somewhere that 10 was a peak.

 

By the way, you might wish to ask your doctor whether the allergy test your son got was IgE (instant reaction) vs IgE. My son and I both tested negative to milk on the IgE test, and months later took the IgG test (delayed reaction) and were both positive. Then elimination made a big difference for both of us. The IgE test is one blood draw for 120+ foods. Or the enterolab tests for casein/gluten is just a stool test, and thus not invasive at all.

 

Also, re no screens, IF you test this and if it ends up as an issue, then you can try an LCD monitor with TV tuner--it works well in our household. Jennifer M's son had problems with it. So you probably don't have to him him stop watching. You could record his shows the week he misses them. Also, it may not be an issue at all (as Carmon found), and if it is, you might only restrict it when he is sick and the symptoms flare up (was he watching more TV when he was sick? If so, the TV could be an additional factor in the worsening. If not, then it is probably just the illness). In other words, the test is just so that you will know. After that you can decide what to do with the information. For example, if he is screeching, he might be willing to experiment. When his tics settle to normal, neither of you may see it as a priority. No pushing this, just letting you know that it isn't as binary as it sounds. Chemar's son knows computer games are a trigger, and she let's him decide the trade-off. You are the only one that knows your child well enough to know what decision he would make.

 

As for disrupting his life, our DAN doctor does phone visits after the first visit. If your naturopath does this, then your son hopefully can do most of these tests at home.

 

Claire

[Heather]

Hi,

 

I live in Canada so not sure if the same brands are available in your area but I will give you the brands my son currently is taking.

 

Each day he takes:

 

SISU

Cal/Magnesium and Vitamin D

Each 2 tbsp. contains: Elemental Calcium....480 mg.

Elemental Magnesium...360 mg

Vitamin D....200 IU

I don't believe this is really the right ratio since I think it is supposed to be 2:1 for the Cal/Mag ratio.

 

Natural Factors - Zinc (Citrate)

25 mg.

 

Jamieson - Vitamin B6

50 mg

 

I don't believe these brands are necessarily the best. It is just what was available at my health food store and I was eager to start. My naturopath did recommend the SISU brand for the CAL/MAG. It is in liquid form and not bad testing...available in strawberry and vanilla flavour (natural).

 

I have actually ordered from Kirkman Labs in Seattle for our next bottles once these are gone. I really want to use the B6 in P5P form (activated form) but couldn't find it in our area. However, what we are taking is definitely working since my son's tics are pretty much gone. Today was the best day we have had in a year. My daugther is doing amazingly well with mood swings and stress control.

 

Heather

Heather

[Claire]

Great to hear about today Heather! Really really great. More and more I think what others think of as waxing and waning is really exposure to triggers or short-term deficiencies that haven't been identified.

 

I am looking forward to your thread on 'what worked for my son', so that other newcomers will see it when they scan here. Even if you just cut and pasted these last couple of posts as a placeholder and then edited them to your high standards later...

 

Claire

[Guest Jeff]

My 2 cents... I too have noticed that our tics increase with colds. We used to ADD to the problem by giving our daughters cold medicines that were loaded with artificial colors and flavors. We've since cut those out and replaced them with homeopathic / un-colored products.

Was your son taking those cold meds to relieve his symptoms? If so, that might have contributed to the increase in tics....

Jeff