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efgh

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guest_efgh

 

There is something between transient tics and tourettes call chronic tic syndrome. But vocal tics are often associated with tourettes.

 

My son is 10 and he used to have a hard time getting to sleep every night. I find that exercise during the day makes a huge difference.

 

Since you specifically mentioned that your son is sensitive to TV and the bathroom (does the bathroom have fluorescent lights?), I really recommend that you pay close attention to computer games, in case they are a trigger. For some like my son, yes, for others now. Especially at night when it can overstimulate before bed.

 

Claire

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hi again efgh

 

Yes..TS people do seem to have high IQ, but often do also have varying learning disabilities. In my son's case it is ADD (no H) and CAPD(central auditory processing dysfunction)

 

Along with this, many also seem to have the OCD as well as Sensory Integration Dysfunction.

 

When my son was first diagnosed, we found it best to be proactive at school and provided doctors letters as well as educational evaluations. I know some people try to avoid this as they feel there is a stigma attached to labelling a child, but we have consistently found that letting teachers and other kids know why he tics or struggles with eg handwriting and comprehensive studies etc has meant that he gets special accomodations (eg allowed to use dictaphone to take notes, can type his reports etc instead of writing them, and a whole lot more!) and the kids now understand his tics etc and accept him for who he is.....he has a lot of friends and is doing really well academically and socially. We did try a special school for one year but, when we took him off the meds they were insistant that there could be problems(without even waiting to see!) and so i homeschooled for the remainder of that school year and then he started at a small and very caring church school which has been just wonderful. He had previously been at a larger church school since K4, but I am sorry to say they were not very accomodating to his needs and that was when we tried the special school.

I have heard good and bad reports on how public schools handle special needs kids, and gather it depends very much on the school.

 

Whatever.....I would strongly recommend that you tell teachers etc ...it is HORRIBLE for a ticcing child to be punished for something over which they have no control!!!

 

My son has had a vast range of vocal tics from simple to complex and from hardly noticeable to shouting and screeching. Thankfully that ended when the supps kicked in!!! He still has m,ore vocal than motor tics and now days they are more quiet UGHS etc. And yes, he also has dealt with coprolalia, which was hard, but he devoloped a coping strategy for substituting similar sounds and syllables and so not offending anyone.

 

He did have sleep problems before we started supps and dietary control. Now he sleeps well and peacefully, tho only on a VERY firm mattress on the floor with tightly fitted sheets and light covers.

I think the 5HTP also helps him sleep better.

 

efgh, if I can give you just one bit of valuable advice it would be primarily to NOT become stressed out and over anxious and ESPECIALLY dont keep drawing attention to the tics. This makes things FAR WORSE as anyone with tics will tell you.

As soon as other people appear to notice the tics, they intensify. And when the kid tries to suppress them, it is like shaking a soda bottle with a cork in it......sooner or later that cork is going to blow out, and often the result of suppressing tics is intensified tics PLUS OCD!

 

I want to point you to a post I made on BrainTalk (link below) on parent's

learning to accept tics that are not serious......I hope it can help you to relax and not get too stressed out over this. Yes! It is scary to deal with at first, and as loving parents we hate to see our kids even have a cold, never mind a neurological disorder....but is this is TS then you are going to have to accept it, and just do your best to provide the healthy lifestyle and supplements and diet that have been proven to help...but THERE IS NO KNOWN "CURE'......some people find relief with medications, but the overwhelming majority report that the side effects from the meds are worse than ticcing.

http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005569.html

 

efgh.......it would be a really good idea to try to find a neurologist or developmental pediatrician who is experienced in diagnosing TS and tic-disorders, OCD etc so that you can know what you are dealing with. With knowledge comes power, as then you know how to treat. Hopefully you will find someone who recognises things like PANDAS etc and knows a bit about the underlying vitamin and mineral deficiencies associated with TS. Many doctors are extremely ignorant and just see it as a genetic disorder that gets treated with drugs! Big NO_NO!

 

If you let me know what area you are in I may be able to find some recommendations on godd physicians in your area.

 

Hang in there....we have all been in the confused and frightened position that you are in now...but be encouraged...whether this is a transient tic situation or full blown TS.....there is great hope. My son is a walking testimony of that. :wub:

Bye now

Cheri

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Guest Guest_efgh

thanks for your soothing words. all we need now is some encouraging words.

worrying about the future makes our present miserable.

what do you mean by junk food? my son insists on going to mcdonalds to have chicken nuggets and french fries (no cool drink) once a week. he is a vegetarian otherwise and so i thought its wise for me to allow him to take chicken nuggets so that he gets more protein. is it considered junk and if so what harm can it do for tics? please educate me.

you said your son's tics started at age 10 and he is doing ok for 2 years .. does that mean things got worse in those two years at a stretch... did he have learning problems, CAPD and OCD much before that itself , if so at what age?.

claire , my son tics more while reading too.. i think more of flouroscent light, he tics more when he does not do activities involving mind and body together like reading, watching TV etc...

chemar, unfortunately i am not in the US and hence cant get much help from you reg. the right doctor. kind of you to have offerred so much help and comfort during the toughest periods. you really are too patient and helpful.

just check back in another couple of hours. will send the details on the multivitamin/mineral supplement. just give me an ok for it so that I can go ahead and start it.

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chemar and claire another clarification

what were the first motor and vocal tics that your sons started with and the duration of each approximately.. just want to understand the pattern though i know that no two people may have the same symptoms..

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efgh

 

we have a lot of parents on the BrainTalk board who are not in the USA (many from Australia, UK, some even further like Israel etc!) so there might still be physician referrals available.

 

I dont believe that an occasional trip to McDonalds would be seriously detrimental, especially since you limit it to the nuggets and fries. I allow my son some indulgence too ..... kids need to feel "normal" and sometimes being too limiting can make them feel as tho they are being punished for ticcing which is a very bad idea.

Balance is what is most helpful.

 

My definition of junk food is far more coloring laden food or stuff with artificial sweeteners (diet sodas are FAR MORE unhealthy than regular, because of the POISON aspartame aka Nutrasweet in them IMHO.... see

http:// www.mercola.com )

 

Things like Doritos and those types of snacks and even some Campbells soups are laden with junk like MSG and artificial flavors, colors etc

 

READING LABELS is the best prevention.

 

 

 

My son was dx ADD and CAPD at age 4

The tics probably started then too, except we didnt recognise them as such

He rolled his eyes. they dx him with vision problems and he got glasses.

He also had a lot of fears and phobias early on, which was probably the OCD

but the docs paid no attention and said it was just "normal childhood stuff"

Just before his 10th birthday, he went into a deep and troubling depression for no apparant reason ...... he has a great sense of humor so this was very alarming.

We even feared some terrible things may have happened, but thankfully those fears were unfounded. Instead, he began to tic severely and sometimes self injuriously...chin banging, eye poking, lots more that I shudder to even remember.

 

He was dx TS/OCD and went for a year med free(he was on a multivit but i didnt know about the supps then) but then we were told by a psychologist that we were "denying him a full life" :o by not putting him on meds and foolishly,tho well-meaningly, we allowed him to go on Haldol which started a nightmare journey as the docs kept trying to quell side effects with new meds and my son turned into a psychotic zombie!!

 

I dont want to dwell on that period ..so i will just say that, after one year on the meds roller coaster, when Zyprexa nearly killed him, he begged us to let him stop meds and we fully agreed.

 

God Bless the person at a local Tourette Syndrome Assocn meeting who told me about Bonnie's research (she hadnt started her Bontech co yet to produce her supps) so I studied her recommendations from that link http://www.geocities.com/Area51/5207/ts_ma...bonnie_sup.html

 

and, after research and consultation with a pediatrician who is qualified in both conventional and alternative medicine, I began the supplements, and accupuncture etc and we have had only steady improvement ever since. He is now 14 and so we have had 4 years of living with TS and have learned how to accept and adapt...with, i must add, much answered prayer! :wub:

 

 

Duration of tics is as varied as the tics themselves......some can last only a few days and other can be months (or years as some TS adults attest)

Tics wax and wane and that is just a cold hard fact about TS.....you can help the intensity and sometimes the duration by the supps and diet etc...but if it is actual TS...they are still going to come and go.

 

Do try not to worry too much. It is only going to drain you. Rather just put that energy to positive use and learn all you can cope with, in small doses so you dont get overwhelmed....but most important, get those PANDAS tests, allergy tests and hopefully a diagnosis so you can move forward.

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Multivitamin details.

 

Vitamin A 2500 I.E. Biotin 0.1 mg Iron 5 mg

Vitamin D3 133 I.E. PABA 10 mg Zinc 5 mg

Vitamin E 13.4 I.E. Cholin 83.4 mg Mangan 1.67 mg

Vitamin B1 0.67 mg Inositol 83.4 mg Copper 0.67 mg

Vitamin B2 0.67 mg Vitamin C 83.4 mg Chrom 67 µg

Vitamin B6 1 mg Rutin 66.7 mg Iod 50 µg

Vitamin B12 3 µg Calcium 83.4 mg Molybdan 34 µg

Niacinamid 6.67 mg Magnesium 66.7 mg Selen 6.7 µg

Folic acid 0.134 mg Phosphor 83.4 mg Calciumpantothenat 5 mg

 

Please note that the calcium is calcium phosphate, magnesium is magnesium oxide and zinc is zinc gluconate in the above.

Its also mentioned that maximum possible dosage for a 9 year old kid is half a tablet. Can you suggest which is the ideal time to take this to start with. Want to start right away once I get an "ok" from you. I would be giving it along with the flax oil which I am already giving 1 tspn twice a day. (hope this dosage is optimum).

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Guest Guest_efgh

Multivitamin details.

 

Vitamin A 2500 I.E. Biotin 0.1 mg Iron 5 mg

Vitamin D3 133 I.E. PABA 10 mg Zinc 5 mg

Vitamin E 13.4 I.E. Cholin 83.4 mg Mangan 1.67 mg

Vitamin B1 0.67 mg Inositol 83.4 mg Copper 0.67 mg

Vitamin B2 0.67 mg Vitamin C 83.4 mg Chrom 67 µg

Vitamin B6 1 mg Rutin 66.7 mg Iod 50 µg

Vitamin B12 3 µg Calcium 83.4 mg Molybdan 34 µg

Niacinamid 6.67 mg Magnesium 66.7 mg Selen 6.7 µg

Folic acid 0.134 mg Phosphor 83.4 mg Calciumpantothenat 5 mg

 

Please note that the calcium is calcium phosphate, magnesium is magnesium oxide and zinc is zinc gluconate in the above.

Its also mentioned that maximum possible dosage for a 9 year old kid is half a tablet. Can you suggest which is the ideal time to take this to start with. Want to start right away once I get an "ok" from you. I would be giving it along with the flax oil which I am already giving 1 tspn twice a day. (hope this dosage is optimum).

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Hi

Your vitamins/minerals look good in terms of the ones included.

Once you know what your dx is, you may want to add some others

 

I would also ask Bonnie, as she has some input on oxides,gluconates etc., but until you know if this is TS or not, those seem ok as a start

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Bonnie just posted this on the BrainTalk board, so I wanted to give you the info here re your vitamins

 

Magnesium supplementation for neurological conditions should not contain aspartate or glutamate in my opinion because of their excitatory nature. Magnesium oxide should not be given because it's low absorption rate. I suggest either magnesium taurate (first choice) or magnesium glycinate. These forms are brain calming and very absorbable (with low incidence of loose stools from lack of absorption) in my opinion. Please always make sure to have a physician be aware of and approve of any supplementation.

 

Always use zinc glycinate or zinc gluconate (never zinc picolinate) (children 10 mg a day; adults 20 mg a day) when supplementing with magnesium to prevent zinc deficiencies from occurring

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Guest Guest_efgh

thanks a million for your info on supplements.

any link between pringles potato chips and tics?? my son is a lover/daily consumer of pringles potato chips and hence am wondering ....

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the ingredients as per the label are

dehydrated potatoes, vegetable oil, corn flour, wheat startch, maltodextrin, emulsifier E 471 (Mono- and diglycerides of fatty acids) , salt and dextrose

hope its ok...

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I guess as long as there is no color, flavor or MSG :wub: I gather these must be the plain(original) Pringles rather than the flavored ones

 

My son Loooves Doritos, but they are like pure poison to him as they are loaded with junk, especially the MSG. Another nasty for him is Vanilla Coke...he absolutley adores it BUT it really makes him tic big time...he doesnt get to have soda much but sometimes at parties or youthgroup that is all they have, so he has learned to stick to Sprite or 7-Up which dont seem to be so bad.

 

It is so hard isnt it as they are surrounded with all this stuff everywhere they go, and the telly keeps telling them how grrrrrreat it all is...

 

My son really has learned now by bitter experience to avoid things that set his tics off, so it makes my job easier, but when he was younger i had to be a real watchdog :o

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