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My 8 1/2 year old son was diagnosed with TS 4 years ago. I posted earlier this week about a non stop head shaking tic that has lasted about 5 weeks now. Well last night, he started a shouting tic. Just a quick yell/shout and said it was just a new "habit". He did it about 5 times over the course of 3 hours. My heart broke for the 1000 th time this month. I feel like we are on a downward spiral. We meet with the neuro Monday. It is just so hard to remain calm when you don't know what is coming next with this. Also, I find myself just waiting for this to wane and get mild again and there is just no guarantee that is going to happen. I am 5 months pregnant with my second child, and am forcing myself to eat and sleep, it is just so difficult though...I had a consultation with a doctor regarding supplements that I should be receiving by Tuesday. I feel like all I can do right now is pray...

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Dear mommy

just wanted to stop by and give you a (((BIG HUG)))

 

PLEASE dont lose hope....yes, it IS a challenge but NO it is not an insurmountable one.

Although it is good that you are researching etc and meeting with a neuro, please dont let you being overwhelmed cause you to maybe rush into medication etc out of desperation.

 

As you are new here, I am not sure if you have tried any of the alternative treatments to help keep tics manageable. I can attest that these things really really helped my son

 

DO try to take care of you now, so that you have the health and strength that your baby inside you needs as well as your precious son

 

Just keep asking questions and trying to read thru as much here as you can, a day at a time.

We are here for you

 

(((MORE HUGS)))

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Chemar-

 

The doctor did offer meds Orap...From everything I have read about it, it does not seem like a route we want to go on. I am going to start my little guy on vitamins and amino acid therapy. I need to make sure I exhaust every single option before considering medication.

 

Doesn't Orap seem a little extreme to try on him first?

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Hi Mommy11, welcome to Latitudes - please read all that you can here before deciding whether or not to go on medication. I can attest that it has been a long road but well worth it as now my son (7 3/4) is not ticcing at all and hasn't been for quite a while now that we've got everything right. There are several tests you can have done that will illuminate various deficencies or abnormalities, as well as allergies and once you address those various things the tics can come under control. My son's did! I, like you saw meds as a last resort. I stuck to this thinking and actually used the tics as my guide - they would get worse when something was out of whack or he ate something that he was allergic to. I saw it first after he ate a neon red ice cream and cone - he looked like he was having a seizure almost he was ticcing so much! I figured if something can make them worse - then something could make them better! I was right and he's doing sooooo well now it is truly amazing.

 

I think what strikes me the most from your posts is the urgency. Remember that these tics aren't hurting him (although they can get to that and my son's did) but you are starting sooner than we did. They are just disturbing you (it is always worse for the parents!!!!). It is horrible to see your child tic - but again I urge you to be patient and have the tests and try some of the things you read about here as there is more than hope here - you can lick this - we did!

 

A couple of really easy things to help. Don't talk about them to him or in his presence - it only makes him more self-conscious and as a result tic more. Give him some epsom salt baths - most of these kids need a lot of magnesium and this is a harmless way to get it. And be vigilant about ALL the dyes and artificial sweetners.

 

Please read all that you can here, ask lots of questions, be patient, and I'm sending you lots of hugs! You've come to right place and have courageously followed your intincts to heal your child (not band-aid him). All the best and welcome,

Giselle

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I started my son this morning on a powder supplement that contains extra B Vitmains as well as extra Mag and zinc. Also Omega 3, 6, 9. I am still waiting on the Amino Acid Supps that I have ordered. Does anyone have a recomendation for a good childs amino combo. I am starting to think the ones I ordered aren't coming!!!!

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Dear mommy

 

are you going to give just a general mix of amino acids or have you determined which specific one's your child needs.

There are some amino acids that are contraindicated in some people with TS and so it is important to only give those that are specifically recommended, especially in a young child.

 

Someone who knows a lot about this is Bonnie Grimaldi, and you can contact her thru her website at http://www.BonnieGr.com

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ok

the only ones in that list that are amino acids are taurine, theanine and methionine (in samE)

 

Rhodiola is a herbal preparation used in traditional Scandinavian medicine,

and 5HTP is a precursor to the neurotransmittor serotonin. It is generally used in depression and for OCD etc

 

Just do be very careful with the amino acids and also ESPECIALLY with the 5HTP if you are not supplementing under the guidance of a knowledgable physician

used correctly and when needed, they are very beneficial. But because of their direct impact on the brain, it is important to know what to give and at what doseage related to age and weight.

 

Here is an excellent reference where you can read up on various supplements

http://healthlibrary.epnet.com/GetContent....&chunkiid=33802

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Hi Mommy11

 

Dear Mommy11, i know how you feel, i was like that when my son just had his first head shaking tic last year in May. Me and my husband were so distraughted when our son had to spend three days in hospital under observation. Probably he started with eye tic but i did not notice or think it was serious. Just have faith and continue the supplements that Chemar has earlier recommended - she has a wonderful thread for newbies here on the supplements that helps TS. Try them as recommended. I follow the program faithfully, and my son has stopped medication (haloperidol) since last year (i cant remember the exact date - was it july or december last year)? Go thru all the old threads here from the very beginning for reference. In addition, the information and articles posted by parents with TS kids in Latitudes magazines/newsletters are very helpful too. You can order them thru Sheila.

 

My son used to have the head shaking tic too, but now he is completely out of it. His tics are now so mild and only come probably a few times a day that we or anyone hardly notice them. Just an update to those who remember me from Singapore, nowadays the tics my son display are mainly "checking on his fingers", "checking who is behind him when he is walking", or simply staring at space. But these are done only in seconds, when he is free from any activity and only once in a while in a day. I guess these tics are known as complex tics if i am not wrong.

 

Chemar and all the others here, i want to thank you all too for all your valuable advise. I dont exactly know which supplement is the one that really helps, but my son is now taking calcium magnesium (the amino acid type), lecithin (1200mg), chlorella, vit E (400iu), vit B Complex (50mg) , niacin and vit B6 and primrose evening oil. Oh yes he is also sleeping on magnetic mattress.

 

Cheer up. Mommy11, your son will get better. :P

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My 8 1/2 year old son was diagnosed with TS 4 years ago. I posted earlier this week about a non stop head shaking tic that has lasted about 5 weeks now. Well last night, he started a shouting tic. Just a quick yell/shout and said it was just a new "habit". He did it about 5 times over the course of 3 hours. My heart broke for the 1000 th time this month. I feel like we are on a downward spiral. We meet with the neuro Monday. It is just so hard to remain calm when you don't know what is coming next with this. Also, I find myself just waiting for this to wane and get mild again and there is just no guarantee that is going to happen. I am 5 months pregnant with my second child, and am forcing myself to eat and sleep, it is just so difficult though...I had a consultation with a doctor regarding supplements that I should be receiving by Tuesday. I feel like all I can do right now is pray...

Hi mommy11 and believe me when I say I know what your feeling (((((hug)))))) I have a 10 year old boy with severe TS and on a given day he deals with multiple tics both verbal as well as motor. Usualy they cycle but there is one tic he has that has lasted weeks and is causing him so much discomfort. He stretches his mouth wide open. He cries to me because it hurts him as well as his feeling of being embarrassed. We have tried so many medications and nothing is working. He also has severe ADHD, OCDC and Intermitent Explosive Dissorder so as you well know he is one huge ball of anger most of the time from each. He is now on Haloperidol to see if that helps but has been taking Resperidol. We have tried everything and not a day or night goes by that I don't cry because his childhood has been cut short due to the difficulties we are having. He has the vocal tic you are discribing also but it has cycled for now, it will return in a couple weeks. Seems even when he is comfortable watching a tv program he grunts out noises but if it was brought to his attention he tried to cool it and that makes things worse because of the anxiety cooling it causes. It's a no win battle so far but I love him to pieces and this battle will never come to an end on my part. I will keep trying........

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Hi Dar and welcome

 

I do just want to caution you to keep a VERY watchful eye for adverse side effects from Haldol. It did some pretty awful things to my son.

 

There are also side effects to be watchful for on Resperidol

 

I hope they work for your child and dont have side effects, but honestly, for my child, those prescription medications only made things worse! I can understand continuing with these brain drugs if they are helping, but is they arent.........it may be time to consider something less drastic that, as many of us here have found, may just have a far better helpful result.

 

This is of course, just my "layman" opinion....but after what happened to my son, I feel a responsibility to warn parents to be SURE they understand the potential severe and irreversible side effects that haldol/haloperidol can cause.

 

There is a wealth of info here on natural treatments, and also the new book by Sheila is an absolute blessing in providing information for those seeking another way to treat tics.

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Hi there! This is the first chance I have had to read this thread. When I saw Orap I just had to reply! How I wish 4 years ago I had the information available on Lattitudes for my son. I am a nurse and listened to our neurologists and did put my son on Orap (he was on it for about 8 months in total)...believe me at the time we were desperate and it certainly did stop the tics and it was AMAZING at the time to see his body still...however Orap was no answer for us...my sweet little boy disappeared...and it was like he was a zombie at times...he gained tons of weight...and in the end had some terrible side effects. We stopped it and tried clonidine briefly. At the time I was VERY uneasy about starting medications but I listened to our doctors.

 

In the end I found answers on-line as I always felt that the tics, etc. were "symptoms" and that all the meds did was mask the symptoms. Once we got to the route causes things improved. A book that I read early on really made a huge difference in my life as it showed me that as a parent there were things I could do to help my son. It is a book about autism but is highly worth reading.

 

http://www.amazon.com/gp/product/076790798...=books&v=glance

 

I understand the need to do "something" but be very careful when introducing supplements. Each child is very different and what helps one will not necessarily help another. Introduce things slowly and one at a time so you can really asess whether something is helping, making no difference or causing an adverse reaction. I also tried amino acids and my son reacted to them...as well he reacted to fish oil which does seem to be beneficial to some kids.

 

In the end we found a very supportive pediatrician who along with a naturopath doctor helped guide us.

 

Without a doubt one of the absolute best things we did for our son was a food elimination diet and once we removed milk (casein), corn. eggs and chocolate my son did much better.

 

A one time my son's tics were debilitating and now he is doing so well and is tic free. It has been a LONG road but worth every second.

 

My best advice is to take a deep breath, go slowly, make changes one at a time, keep a diary, and overall before adding supplements I would recommend looking at food sensitivities first.

 

Take Care,

Ronna

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I sure do appreciate all of your responses. My sons head shaking tic has decreased and he seems to be waning. He has still had a couple of bouts of shouting each day for the past 12 days. Its loud, and so bizarre to me. My newest OCD obsession is my sons behavior, guess I at least know where his TS came from. I guess the scariest thing right now, is every time he does a tic or a new tic I just wonder if it is going to become severe and constant. Wonder if I will have to keep him out of school...Its so tough. I find myself thinking of my son as a "ticcing" time bomb and I am afraid I am not enjoying him like I used to. Anyway, thanks for all advice and thoughts. I will definitely work with a dr, to get the best results possible.

 

Ronna and Chemar,

 

Curious....how old are your boys now?

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