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romiaary
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I just came upon this web site and decided to see if anyone has heard of my situation. I have 2 sons with tics. MY father and aunt and cousin also have them. My older 10yr old has very mild ones that only come on with stress and are not bothersome. My 7yr old has has tics that started at 7 months old. No doctor that I have talked to has ever heard of this although it is doccumented by our pediatrician. All of his tics through the years have had some involvement with his neck.. Still the original one where he continually drops his head up and down to the left side is present. That also confuses doctors. It has never gone away and the other tics that have occured are all similar. Has anyone heard of this?.

 

My son has complained about them so we have tried several meds including an Anti depressent, Straterra and Tenex. The problem is that we have certain mood disorders in the family and these drugs are known to cause problems in families with mood disorders. There is even a warning on the FDA about this and Tenex. He has had poor reactions to all of these meds.

 

I know there are alternative treatments, which I am open to, but I would really like to know if anyone has encountered problems this young and with such little changes. Any responses would be appreciated.

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Hi; I read your story and I wish I can help...But I have some questions too, except I am not sure if my message went out. Title was "concerned". Would you be kind enough to tell me how you got your message posted? Maybe I am doing something wrong.

 

I thank you and I just want to add whether or not your children have been seen by a pediatric neurologist? I have my first appointment this week for my six year old.

 

Evelyn Rentas

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Hi,

There are many on this site who have had great success going the natural way. One thing recommended is to try and read some past posts. I have seen improvements in my daughters OCD/depression and tics from doing diet changes and supplements. She still tics though not as many at one time. I took my daughter last Oct. to a neurologist and he told me "your daughter has tourettes there's nothing you can do other than medication". That didn't sit well with me and I was led to this site which has helped so much. It's all so overwhelming at first and I still have moments but it has gotten so much better. My daugher has not followed the diet (gluten free/caesin free) too much during Aug. for many different reasons, one being she's a strong willed 11 year old and I've noticed an increase in tics. I hope this is a start for you and helps you out. Hang in there!!

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Hi; I read your story and I wish I can help...But I have some questions too, except I am not sure if my message went out. Title was "concerned". Would you be kind enough to tell me how you got your message posted? Maybe I am doing something wrong.

 

I thank you and I just want to add whether or not your children have been seen by a  pediatric neurologist? I have my first appointment this week for my six year old.

 

Evelyn Rentas

9166[/snapback]

 

 

 

I'm not sure I,m doing this right either. I posted by going to Torrets and tics and it has an option to post new topic. After I wrote my stuff, I pushed add post. Yes we have seen more than one neurologist and he has them baffled. Find one that you're comfortable with and research everything they tell you. Don't go on blind faith in them We have been bitten by that since my kids have other issues and we've taken bad advice just because a doctor has given it to us. Good luck.

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Hi,

There are many on this site who have had great success going the natural way.  One thing recommended is to try and read some past posts.  I have seen improvements in my daughters OCD/depression and tics from doing diet changes and supplements.  She still tics though not as many at one time.  I took my daughter last Oct. to a neurologist and he told me "your daughter has tourettes there's nothing you can do other than medication".  That didn't sit well with me and I was led to this site which has helped so much.  It's all so overwhelming at first and I still have moments but it has gotten so much better.  My daugher has not followed the diet (gluten free/caesin free) too much during Aug. for many different reasons, one being she's a strong willed 11 year old and I've noticed an increase in tics.  I hope this is a start for you and helps you out.  Hang in there!!

9167[/snapback]

 

 

I will be looking into that. The thing is, he doesn't fit the tourettes diagnosis. He's never had vocal tics, the tics he does have never seem to change much or come and go. He doesn't seem to have any particular foods that seems to set it off. He's never strung them together or any of the typical things. Thanks for the suggestion and reply.

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Hello, I'm new here and I'm very grateful and blessed that I got here. I hope someone can give me information and help me get on the right track. I have a beautiful 9 yr old boy with autism who now has developed motor tics(head-jerking) movements. This just started 1 week ago all of a sudden. His head jerking is severe at times because it's constant and my little boy shows fear....he can't express what he's feeling and I'm sure if I explain it to him he doesn't seem to quite understand it. It's even more difficult when the child already has a neurological disorder. When I first saw the rapid head jerks I must say it scared me and I've cried all I can. I did my own research and started looking into tics and I took him to the doctor and they diagnosed it as tics. I have an appointment to see his neurologist next week to confirm and run some test. I am not a fan of medicating my son, I've always treated him holistically, naturally and with vitamin supplementation. There are also restrictions to what he can eat because certain foods trigger certain reactions because of his autism.

Can anyone please share their ways on handling the head jerking tics?

Are there any vitamins that work well to help decrease tics?

I feel so sad in seeing how the head jerking debilitates him. Can anyone please bring light to this situation that's so new to me?

I will appreciate any response ^_^ and God Bless all..........

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Hello to all of you and welcome ^_^

 

I dont have much time to post at present but there are very many answers to all of your questions to be found here.

 

I have bumped up a thread where I document the treatments that have helped my son, which I hope will be helpful to you.

 

http://www.latitudes.org/forums/index.php?showtopic=687

 

Do also try to find the many excellent compilation threads by Claire

 

There are also other very helpful threads by numerous members here that document the things they have learned and found helpful

 

all the best to you

I will try to spend a bit more time back on the board again soon when I have less of a heavy workload and family commitments

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romiaary,

I bumped two threads started by a Mom who has a 7 mo. old son with a head/neck tic. She hasn't posted for a while, and I hope she updates us soon, but I thought there may be some info. in her posts that might interest you. The thread titles are "wet behind the ears and Pediatric Neurologist Appt".

Just wanted to add that my boys did not tic as infants. The tics became noticable for both around 6ish.

 

Evelynr,

 

It looks like you have your posting problems figured out. If you want to repost your "Concerned" topic, try again! Ask your questions, and don't be discouraged if it takes a little while to get a response. Summer is such a busy time, but there are wonderful people here who will respond, as Chemar did, as soon as they get a chance.

 

luvmylilrainman,

 

My heart goes out to you and your son. We are the ones that are blessed to have you here.

Here is a link to a website that I read daily. The posts come right to my email.

EnzymesandAutism@yahoogroups.com There is a post there today from a Mom dealing with tics in her autistic child. A response to her from another mom talks about- Tourette like symptoms showing up in her son, when his yeast levels get out of control. There are posts there occasionally about tics. Personally, I believe it is all related. I know there are people who would disagree with this, and it probably does not apply in all cases, but it sure seems like the treatments and causes have a lot in common to me. If you are not a member of that group, I think you would find it very beneficial.

I know how scary tics can be, especially when you can't even explain and reassure your little one, but maybe you can identify something like a virus, streph, yeast or bad bacteria issues (there are so many things)! that may be contributing to this new symptom.

Very glad your here. I hope you will keep posting and asking questions.

 

Sydsmom,

 

I can't remember if you have tried enzymes for help in GFCF dept?

 

Kim

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Kim,

Sydnie does take enzymes - they come in the form of a pill called Digest Right suggested by our DAN! doctor. Thanks for all of the info you pass on - your time and efforts are very, very much appreciated. I'm going to buy the Krill Oil this weekend and hopefully Syd won't complain too much about taking 6 more pills. I'll let you know if we see any differences - I know it may be a while. School starts in 3 weeks - Middle school so it's all new. Praying she adapts well. She did make a comment the other day about her tics. I told her I may start her on the Krill oil and for some kids it took the tics away and she said, "They're like my old friends mom" It made me think she doesn't resent them as much as I do. It was interesting and a little comforting at the same time. I've asked her if she feels the struggle inside of her head and all the negative things I've read that some with tics face and she said "no". That too was comforting. But, she is a pre-teen and so that was the feeling this week :)

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:) Thank you all so much for your help and reponses. I am so glad I found this place because everyone is so caring. It seems I'm gaining strength and courage as I start to research on my own and read what you all have experienced and how much information each one of you has. Due to my son's autism I can't tell you enough how much I've researched and put into practice with much success all the alternative treatments. I can honestly tell you that I can definitely give lots of info on the "Autism" subject but my gosh :) I was so scared and lost when I saw my son's head jerking constantly and how fearful and confused he looked. I've learned that if we are going to help our children get better WE have to take the first step in educating ourselves and listening to our hearts. I did just that....

I am so blessed to have my little boy and you are all so blessed to have your children.

He is still head jerking and I'm noticing it's worse as soon as he wakes up and in the evenings. I'm also keeping a journal and writing down triggers that I believe cause his tics. Vitamin supplementation has started again full speed ahead.

I pray this will all help.

I'm interested in finding an Integrative medical doctor but I don't know how to find one here in the Bronx. Can anyone help?

Once again "Thanks" to all who have shed light to my heart :D

I will continue to keep everyone posted and I will also bring light to someone's heart.......

God Bless All........

luvmylilrainman

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Luvmylilrainman,

 

If you go to the topic page, you will see toward the top of the page "Finding Medical help" Hopefully you can find a Dr. in your area. I actually got the name of the Pediatric DO that I recently took my sons to from Immuno Labs. They said he had a high rating, which I assumed meant that he ordered a lot of food sensitivity testing from them. After checking out the few DAN Drs. in our area, and looking at the wait time and cost, I decided to give this Dr. a try. He actually seemed to be very fimiliar with the DAN proticol. Here is a contact page for Immuno with their phone # listed also. http://www.%20immuno%20labs.com/

Maybe they could give you a referral too.

Just one more thought, if you can get to the bottom of what has caused the tic, maybe you will see improvement in another area too. I have found the use of omega 3, a compounded vit that I order from this site http://www.bonniegr.com/Interview%20with%20Bonnie.htm

a little extra zinc, and digestive enzymes (Zymeprime and AFP Peptizyde) from http://216.114.78.114/webcenter/sites/hni/ to be very effective for my boys. Also, more green vegtables and better diet, although we fell of that wagon today, pretty bad! SMORE POPTARTS and a chocolate cream pie. I just get so tired of handing out all the pills and saying no to all the goodies, so I did it up right today.

We may be throwing a 2005 yeast fest in a couple of days. I will be queen yeast, as I ate more than the boys.

 

Kim

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Sydsmom,

 

Oldest son started middle school last year and loved it, even though the first 1/2 of the year was rough, mostly at home, due to the tics and Ped. telling us that all of the night time itching was winter dry skin, although his skin did not appear dry at all. Finally when he had allergy testing, and he exploded with reactions and started zyrtec along with the other supplements, the 2nd 1/2 was sooooo much better.

 

The statement about the tics being like old friends sounds beyond her years. Do our kids share a kind of maturity? Probably have to. The head strong part sounds fimiliar too.

 

Firefliesway post was really interesting, and I can't wait to hear your results with Krill.

 

If you get a chance, I would be love to hear your opinion of the use of the enzymes. Oldest had a mild head shaking flair which stopped the day we started the enzymes with him. Youngest biggest success so far is DRY NIGHTS. This is BIG for us, almost as big as losing wiggley cheeks/ears and shoulder shrugs. These tics are not 100% gone, but we're making great head way.

 

Kim

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Hi Kim and Thanks.....I will look into DAN doctors as I am familiar with them because of my son's autism. I've never went to see one but now I've made the right decision to do so. You are absolutely right when you advised me on enzymes.

They help tremendously with "autism" and why not the "tics".

So far today is a much better day...praise God. His tics have decreased and he is my happy boy once again :)

Unfortunately I had not given him his vitamin supplementation for a month and just 2 weeks ago the head jerking tics started. As soon as I started him on the essential vitamins, his tics are more mild than severe. It's just only been two weeks and I've seen improvement already.

I've added L-Carnosine and a glyconutrient called Ambrotose as well.

If anyone is interested there are great nutitional supplements that can help at www.kirkmangroup.com

I must say that at times it's difficult because I'm treating the tics as well as the autism so there's alot of nutritional supplementaion going on and just to let you all know...my son has Vaccine-Induced Autism and that's another subject.

I'll keep you all posted and thanks again for all the information....

God Bless All........ :D

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Hi girls, and sorry I have been MIA, My elderly parents and my two little ones keep me so busy.

I too had brought my six or seven month old to a pediatric neurologist and betweeen her and my regular pediatrician, I never got any answers or truth at any appointment. Lies lies lies. :)

Soooo, I did what the great people on this board have told me works for them.

I stopped the immunizations that could contain mercury (themerisol)-swiched from soy based to milk based formula -stopped useing flouride water- and went to a great chiropractor/herbalist guy who put my son on some zymex thymex and some fax-oil. Since then I have seen a 75% drop in his head shaking and jerking.

He is also crawling and getting into everything. And I mean everything.

Follow your mommy intuition and listen to the wisdom on this board, and educate yourself (sounds like you know your stuff) and good luck to you. If I could answer any questions -PLEASe E-mail me.

Love to you

Sarah

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Luvmylilrainman,

 

So glad your son is doing better with the use of his vits. again. I'm wondering if he has been treated for yeast, or if you use probiotics?

My boys new Dr. strongly feels that these problems arise in the digestive tract, and if you can fix the gut, you can reduce the amount of supps. This makes perfect sense, but I have been under the impression that you need to have the antioxidant levels raised and things balanced to support the body during treatment of yeast/bacteria issues. I want to keep my boys healthy and tic free while he is working on their digestive tract. He also believes getting to the bottom of metal issues is essential. I told him I wanted to supplement deficiencies and see if any metal issues would resolve themselves, especially since we have seen such good results with minimal supplements. We kind of hit a happy medium, but I still want other tests (Spectracell especially). I was just afraid to be too assertive, since I have been beaten up pretty badly by the reg. Drs. Part of me just wants to put all of this in a Dr. hands, and the other part can't. I've come too far to just "hand them over" again especially if I disagree with something. Sorry, I got side tracked.

 

I hope you can find a good DAN! Dr. close to home. It sounds as if you have a good handle on how to help your son. He is lucky to have you. Please keep us posted on his progress and I know it may be hard with the other supplements, but I'm sure all would like to hear what you see with the use of L Carnosine.

 

Kim

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