neck snapping

[mary]

Hi all,

 

As I posted not too long ago, my son who is 9 has TS. He's went from shoulder shrugging to a neck snappping movement. Any suggestions of what may help it?? I can't find a trigger. My husband has TS so I know its a gene issue. I do have an app't with a Dr. on Monday. He specializes in allergy, environment, etc. I got his name from Sheila's book. I took him to his ped dr. last week and he classifies his TS as a mild case. Of course, that doesn't help much. I found out today from my son, that when he's in school and has the urge to do it he asks his teacher for a bathroom pass and lets it all out in there. So far nobody in school has noticed it or asked him about it. (so he says). He's a very good boy... athletic , popular, good in school. This just kills me when I feel like he's trying to hide it.

 

For now, this is the only thing he is doing.

 

Any suggestions would be greatly appreciated!!!!

 

Mary

[kim]

Mary,

 

If you have read Sheila's book and have an appt. with an allergist, you probably have a good start.

Just wanted to let you know that I have a 9 year old son too, with the same two tics you described. He was eye twitchy since he was about 4 or 5 although I would have thought nothing of it (hardly noticable), had his older brother not had tics. Then came some mild hummmm hummming, then the head shake, then the shoulder shrug. Currently, nothing noticable and these things were pretty much one at a time. He did get facially more twitchy last week during a sore throat, body ache virus.

 

At this time, I have no idea if the small amount of Bonnie's vitamins, and supplementing with zinc (he had a low zinc serum of 76) removing peanut butter from diet as it showed high on IgG testing and have started Culturelle probiotic recently, have helped or if we're just in a low tic phase. His tics have never been very severe, but that head shaking one, is one you can't hide, and the one I have found most upsetting with both boys. With my older son it's painful, with younger, just noticable but not a violent shake.

 

My older son used to do just what you told your son about the bathroom at school. At one time he had a loud vocal tic-which passed relatively quickly and never came back. I can only imagine what people passing that bathroom thought. He also got into a shoe squeaking tic. He would make his tennis shoes squeak and leave black marks on the floor. Pretty soon most of the class was doing it, and really making life miserable for the janitor. I'll never forget when the boys went to register at the start of one school year. The janitor was outside in front of the building and saw us comming. He took off like a bat out of hang (and he's a short heavy man) practically threw himself in front of the doors to stop us from going in, and informs us that he was just locking the school. I later figured out that his highly polished floors were the problem, as they were having an Administrative meeting that evening at the school. When at all possible, we have kept a good sense of humor about tics. I don't know if you have as many ticcy kids where you live, but as far as I'm concerned, we have many in the schools. During my sons music programs, which the whole elem. school participates in, the kids stand on risers on stage under lights. You should see the eye blinking, nose scruntching, shoulder shrugging, going on. No one pays any attention. It may make your son feel better if you point some of that out to him. Also, with the return of longer hair styles, we're seeing a lot of head shaking, as boys throw their hair off of their face. My guys are still short syles, but good diversion for a flair! At the age your son is at and my younges, it seems to me boys are in constant motion, and I believe other kids hardly notice.

 

My older son(13) and I were talking about this just before Christmas. I asked him how many kids in middle school had tics. His answer was "a lot." I'm super sensitive to them, and figured he must notice too. I asked him what he notices the most and he did the facial stuff, and named about 5 kids that did some form of head shaking, neck tic or at least what looks like it. So if you stop focusing on your own child, and notice some of the others and their movements, you may see where it's not as noticable as you think. I watched a kid in the outfield for a whole inning thinking it was my younest son, shoulder shrugging last summer. When they came off the field, I realised it wasn't him I don't know if this boy was ticcing or if his jersey was just too big, which is what my youngest son says makes him do it. He says his clothes don't feel right, so maybe it's more of a sensory issue than a true tic with shoulder shrugging.

 

Anyway, you're not alone and neither is your son. If you have any specific questions please ask. I can't tell you how helpful this bd. and other's experiences have been to me. There are SO many things to explore to eliminate or at least keep things managable. I'm sure Sheila's book which I haven't read yet, along with the people here will help you sort it out.

 

Kim

[mary]

Kim,

 

Thank you so much for your input. Its nice to have support from other people who are going through the same thing. I'm really looking forward to Monday's appt. I hope I get something from it. Its gets confusing .. you don't know where to start first. What kind of tests were performed on your boys initially?

 

The thing that confuses me the most with TS is there a difference when there is a family issue (in my case only my husband has it - we can't even trace it before him) and environmental issues? You read so much in all the posts and then you start second guessing everything. I have two other children who show no signs - my daughter is 6 yrs old and another son who is 2 yrs old. Does someone in your family have it?

 

When you started with Bonnie vitamins who guided you with the dosage, supplem, etc.

 

Thanks again for your support and advice.

 

Mary

[kim]

Mary,

 

Your very welcome for the response and sorry it took me so long to get back to you.

 

The first tests my boys had were basic blood work and urinalysis through Pediatrician shortly after oldest son had started Bonnie's vitamins,(her site recommends a physical/proper kidney and liver function) and standard allergy testing. Youngest son only had three mild reactions, oldest was an explosion of environmental reactions like dust mites, trees, grasses, cat, etc., 6 medications were prescribed btwn the two of them. One being a stomach acid reducer, and one being a nasal steroid. Two things that I did not feel I wanted them on. I do give oldest 1 zyrtec per day, and it has helped. That's the only prescription medication we're using.

 

I also ordered a test through Direct Labs/Metametrix to detect yeast and bacterial issues. This is a test that you can order yourself, (no Dr. signature necessary) They just mail you a urine collection ( plastic container) and you follow the directions and mail it back. It did show a high reading for youngest son on a yeast marker. I didn't order it for oldest son, as he has never shown the stomach problems or eating aversions like youngest.

 

Then I took the blood work, urinalysis and my Metametrix test results to an Alternative Pediatric DO who specializes in allergies and is familiar with the vitamin therapies. He said the metametrix test was one indicator of a yeast problem, and wanted me to get my Pediatrician to order thyroid, blood yeast, ammonia level (this is something I thought for sure would be high in youngest son, but....Dr Shaw from Great Plains says not to do ammonia testing, it's too unstable, you need to test orotic acid) and IgG food allergy testing. He said these were standard tests that any Dr. could order and if ordered through primary care physician, insurance would cover. It was very obvious that our Peds office, or the girls in the lab were not familiar with the IgG testing to say the least. I believe it's a good test to have done, if you have insurance that will cover. If not, Immuno Labs tests way more, much cheaper and does ELISA testing which seems to be the preferred way of testing amongst posters/DAN dr.s. It appears we're seeing some positive results with the removal of peanut from youngest sons diet. He also wanted a comprehensive stool analysis from Great Smokies, and sent us home with those test kits. We never did the Great Smokies test, because the boys didn't want to, but I have read that it's a good test for digestion, and I think fatty acid metabolites and sometimes will pick up yeast overgrowth/bad bacteria (It seems many post that this test can miss the yeast problems, and the urine test is more reliable than the stool test?). I think everyone knows the results of the IgG testing, if not just ask and I'll do another thread

 

I have not seen the reports on the other tests that Ped had done, just the food reports. He considers things to be "normal" that I find concerning, so I need to get copies of those as well, for next appt. with a different Alt Dr.

 

As far as dosing Bonnie's vitamins, I just started giving my, at the time 12 year old about 3 first night, then 5 and so on. When we got to about 15, he felt hyper. I emailed Bonnie, and she said to cut back or ride it out, that there were no stimulants in the vits. I had read many times where B vits. can cause hyper feelings so we cut back to about 10 and stayed there for a long time. So, I guess the answer is to follow her dosing instructions, go slow with upping the dose, and observe how your child is reacting. I wanted to use the most minimal amt. possible, and have found a MUCH lower dose than what is allowable according to her dosing chart, for his weight, to be effective. Youngest son takes what ever I can get in him, due to his eating issues which I have made no progress with. Usually about 5 per day, and about 25 mgs. of zinc and a little extra vit. C here and there. I really feel he needs additional zinc, probably much higher due to low zinc on blood test, but won't use higher amts. without a Dr. tracking. The Alt. Dr. said 50 mgs. per day would be ok, but I still think you need to keep track of the zinc/copper ratio (as Claire recently pointed out again) and I didn't know when we were going to get back to him for retesting. Unfortunately, copper was not tested on CBC originally, zinc only. I think, if you can convince your childs Dr. to order this one single test, it may be helpful. If anyone does this as a starting point, I sure hope you post your results.

The struggles with the Pediatrician and insurance have been horrible. I have made some head way, but it has been slow going. Just when I FINALLY get a referral (first appt. wasn't covered, I paid $300.00 for a consult on both boys) for the Alt. Dr. I get a letter informing me that he's retiring in Jan

 

We do not have a family history of tics or TS. Personally, I don't think it makes any difference, except for a "heads up" when you start to see a problem with a child, or even before.

 

Claire posted Dr. Walsh's opinion on the "Loaded with info" thread, I believe he pretty much sums it up there.

 

http://www.directlabs.com/testtypes.php OAT test I had done, no Drs. signature required

http://www.greatplainslaboratory.com/russian/test1.html Lab many use for OAT testing, does require Dr.s signature.

http://www.gsdl.com/home/assessments/cdsa/ Requires Dr.s signature

http://www.bonniegr.com/index.htm

http://www.immunolabs.com/ Requires Dr.s signature

http://www.alternativementalhealth.com/art.../walshMP.htm#Py

excerpt from last;

Tests for plasma zinc, serum copper and serum ceruloplasmin can give a good indication of "metal" oxidative stress. A Cu/Zn ratio greater than 1.20 or an excessive amount of "unbound" copper..... that is, copper not bound to ceruloplasmin..... are indicators of excessive free radical metal ions which can suppress or destroy many digestive enzymes, cause diarrhea, digestive pain, maldigestion, malabsorption and multiple food sensitivities. The levels will be abnormal in the presence of toxic overloads of mercury, cadmium, lead, antimony, etc. A hair analysis for the metals can provide some information also.(March 6, 2003)

[kim]

After typing the response to Mary, I looked at zinc test done through Labcorp. It said serum zinc, not plasma zinc. If anyone has zinc results, could you post which one was done?

 

TIA

 

Kim

[mary]

Kim,

 

Sorry for my delay in responding. I've had computer problems but now I'm back online.

 

Anyway, thanks for all the threads and response. Like I mentioned I took my son to the specialist and $300 later, I found out my son has a corn allergy. I was so shocked All the years giving him corn, syrup, etc he never showed an allergic reaction to it. Now since that came back positive I want to look into doing more food allergy testing. I might go back to my local allergist who takes insurance and see if they perform the tests the same way. Is there a difference with testing (prick test or injection)? His corn testing was done with injections.

 

Now that he has a corn allergy and I'm looking in my cabinets reading labels its amazing how many products contain some form of corn. I guess I have to get over to a health food store.

 

Thanks again and good luck with your boys. I'll keep you posted.

 

Mary

[Guest]

I wanted to suggest a form of massage or a chiropractor for this tic. About 2 years ago I found that if I got regular therapeutic massage I could keep a head jerking tic away. I tried Osteopathic Manipulation of my back and I didn't like that. I think the reason why I didn't like the Osteopathic Manipulation is because I like deeper pressure. I think the type depends on the child/adult. At my acupuncture appointment my acupuncturist does Chinese Cupping and that's taken the place of going to a massage therapist. Chinese Cupping/Massage helps a lot with these types of tics for me.

 

Carolyn

[kim]

Carolyn,

 

My oldest son has had a head shaking flair since shortly before Christmas. He had had two moles removed and developed a slight staph infection. I don't know if it was the antibiotic, the infection itself, slacking on diet or what. We had also cut back to 5 of Bonnie's vitamins recently, from 10. Thanks to the people here, I was not surprised when this happened after such a long tic free period. The head shakes were very minimal until he got a sore throat, ache all over virus, then it got worse. I found a chiropractor who advertises as the areas "Only brain stem specialist." Under Brain Stem Sublimation, he has Tic Douloureux listed. I had never heard this phrase before. He explained that this involved nerves that usually involve tics in the area of the face, neck and shoulders. I loved this guy. He has 12 years of education. It is amazing to talk to the Dr.s who have the same concerns that you do. The pure water cooler in his waiting room, and the pamplets warning of immunization injuries, and what parents need to be aware of, tipped me off immediately, that we were going to get along. He has 3 young children of his own, and we agreed on so many things that concern the majority of us here.

 

My son has had 3 appts. and two adjustments so far. He pointed out at the first appt. how one of his shoulders were dropped, which I hadn't noticed, but was very evident when you looked at him straight on. The xrays showed some tilting and rotation of structures. He said he could eliminate the head aches assoc. with the head shaking rather quickly, but he said to get the alignment back to a point where it would "stick" would probably require about 3 months of adjustments. He said he had treated twins with tics, both vocal and motor. The one brother achieved 99% reduction in tics, The other brother only about 60%.

He also said my son's condition had been present for at least 5+ years, and believed that we would have better results with adjustments because we were doing supplements, omega's etc. He showed me the basil ganglian nerve bundles in relation to the brain stem, and we discussed the nervous system in relationship to the immune system. Really interesting.

 

I'll try to update on what improvements we're seeing with the tic.

 

I would say from the worst of this episode to now, the head shaking is about 75% better.

[kim]

Bumping for newcomers using Bontec vits.

[kim]

I thougth this thread gave a little history of my boys use of Bonnie's vitamins.

 

It mentions my oldest son's screeching vocal tic, which was breif, only before bed. It stopped, never returned, and this was prior to use of the vitamins.

 

To update. My oldest son (13) currently is taking 8 TS Plus control per day. 500 TO 1000 mgs of vit. C , 1 EPA/DHA (Bontec fish oil), and occasionally a little extra zinc.

 

My youngest son (9) is taking about the same thing, only we use mag taurate (Bontec) and Twin Labs calcium citrate caps which contain 150 mgs of calcium and 75 mgs of magnesium oxide in one capsule, if tics look like they're flairing. SLURPEES are a tic trigger for him. He likes to mix colors and you can see a change in behavior and tics within about 1/2 hour, or sooner. He is also taking digestive enzymes, for sensitivity to milk protein and peanut (butter), zinc, probiotics, and Omega 3 6 and 9 from Nortic Naturals.

 

For the Mom who mentioned that her son is taking medications....Please carefully check to make sure that no supplements will interfere with his medications. Even if you ask the Dr. who prescribed them, ask a Pharmacist too! I had an experience with my older son, where an antibiotic was prescribed which was ineffective when taken with calcium. I had told the Dr. that he was on a heavy duty vitamin regime for a tic syndrome, and he prescribed Doxycycline as a preventive drug for infections after my son had two moles removed. He developed a staph infection. I found the info. myself, but had to check about a few interaction sites to find it.

 

There have been a couple of posts where people have suspected vitamins or minerals were interferring with a medication. I read once where calcium should not be taken within 4 hours of an anti seizure drug. I have no experience with using medications and supplements together, don't know if drug prescribed for disorders discussed here would be considered seizure drugs, but please check cafefully!

 

I also feel it's better to split the supplements up and give at least twice a day if possible.

 

Your body will only use certain amounts of things in a given period (my understanding).

 

If there are any other questions I can help with based on my guys experience, just ask.

 

Kim

[kim]

Thought I would add this to previous response, from prior post:

 

The point here was, when I was looking at Cipro, I decided google Doxycycline too.

http://www.drugs.com/doxycycline.html

Do not take iron supplements, multivitamins, calcium supplements, antacids, or laxatives within 2 hours of taking doxycycline. These products may reduce the effectiveness of doxycycline.