New to all this - Please Help

[Jodi]

I am new to all this. I have read almost all the wonderful information on this site, and have followed much of your advice.

 

My son has had tics for many years. First, eye blinking and now persistent sniffling. Other tics have included jumping, facial contortions, stuttering, general wiggling, etc. He is 9 now - ticcing since about 6. Some OCD type-behaviors but nothing that has "gotten in the way" of his life - so far.

 

So far, we have tried a very clean diet (including gluten and dairy free, artifical color/flavor free, etc. for almost 3 months), Magnesium supplements, multi-vits, DHA supplements (Flaxseed), Epsom Salt baths, no TV, no computer. But, NO change.

 

We are schedule to see a neurologist. What should I expect? I don't think we are at the point of using heavy-duty meds, and want to explore natural methods. Should I expect that a M.D. will discuss alt. methods of treatment? Should I expect to get a referral to an allergist? Does any one have a list of questions that I should ask??? We need help and want to make the most of the visit with the dr.

 

Any advice will be appreciated!!!!

 

Jodi

[CSP]

Hi Jodi,

 

Welcome I'm glad you have found this place helpful. I can only tell you how are Neuro. was and he did not want to discuss natural anything.

 

He only told us we could try this or that med and to give it a few years he should outgrow most of the tics. Our Dr. said he sees 7 new kids a week with tics and just felt this was the trend. He was more or less getting us in and out and moving on to his next child.

 

I hope others have a happier result with their neuro. they can share with you.

 

Sounds like you have a great start and I hope it is just because of the age of your son that you have not seen more encouraging results with the diet.

 

Keep it up,

CP

[dee45]

Hi,

I am also new to this site but have also gotten so much info. Our neurologist was quick to medicate and not offer any alternatives. A year later and much smarter I am weaning his clonidine and cleaning up his diet--he was allergy tested a few weeks agod which show allergies to corn, wheat, soy, and a bunch of other enviromental things. Tomorrow we are drawing blood for PANDAS, Lymes and some other things--he is also having a test done through ALCAT labs IgG testing. I hope this is somewhat helpful-alot seems to be trial and error. He was on alot of vitamin supplements which I stopped about a week ago --I am going to reintroduce a magnesium supplement in a week but his tics were bad for the last 2 weeks so I am starting everything over and keeping better track of things. I hope things get better for you and you have better luck than I did with your neurologist--best of luck!!

 

Deanna

[guy123]

There are four (five if you could marijuana) meds I have come across in my research that don't have the horrible side effects of all the rest. They are:

 

Blood Pressure Meds

Clonidine - side effects - tiredness, dizziness upon standing, loss of libido, headaches, all of which lessen over time (except loss of libido)

Tenex - side effects - same as Clonidine but the tiredness isn't as bad

 

Anti-convulsant meds

Topamax - side effects - pins and needle feelings in your fingers, change in taste, weight loss, nausea, upper respritory infection, osteoporosis

 

Cannibis

Marijuana - side effects - short term memory loss, euphoria, anxiety, increased appetite

Marinol (extracted THC) - side effects - increased appetite, eupohria

 

Pretty much everything else, especially anything in the neuroleptic class of drugs, has horrible side effects including but not limited to irreversible movement disorders and sudden death.

 

I've spent months researching tic treatments and you can find a list of every medicine I've encountered at http://www.tourettestreatment.com Sorry about the ugly colors on the site; I need to change them. Click on "list of treatments."

 

I suggest you study (or print out) that list and bring it with you to your neurologist visit. That way if he says something like "I think you should try Haldol" you can look it up on the list and see that the side effects include irreversible movement disorder (Tardive Dyskinesia) and sudden death, and you can say "no, let's try something else first."

 

Good luck.

[CZL]

Dear all friends here:

 

 

"irreversible movement disorder " ----- I am just scared by this ! Maybe my son has this already!?

 

My son 11 years old, has TS for almost 6 years. He had all kinds of Tics --- eye rolling, shoulder shiver, vocal.... He has tried all kind of meds so far.

Right now all other tics are not severe just the very bad thing is he has mouth biting, mouth opening, mood issue -- crying often, depression. He right now taking Zoloft 40mg/day, Haldol 1mg/day, Topiramate: 25mg/day. I also put him on Natural Calm Kids for couple of months already. His weight is 170 lb.

I hate any meds, but..... I am planning to decrease the meds and hoping I can get rid of them. I have talked a friend here and will try the experience she shared with. I have started salts bath already.

Now, my question is his mouth opening ----- He opens his mouth to a utmost slowly, he does this very open, is this "movement disorder"? I noticed if I increase the dosage of Haldol, this could get better.

Is movement disorder really irreversible???

His mouth biting maybe is kind of OCD, he bites his mouth inside around last teeth, suck and bite by both upper and lower teeth. He also often has chin moves left and right then teeth touches the side around --- this causes ulceration and sore.

Looks like his mouth opening, mouth moving right and left, biting are mixed together at most of time, he has this for about a year already.

 

Thank you every one for all of your help. What I can do if this is "movement disorder"?

[natanddan1]

Hi

 

Just found this forum and am very grateful to find others going through the same issues as my son.

 

Dan is 12 and has suffered from both vocal and muscular tics for some time now. He has recently got worse however, they diminish and return over a period of 1 month at a time. We have just been refered to CAMHS (Children and Adolescent mental health services) and had our first meeting today. WHAT A NIGHTMARE!!!!! I was not able to attend due to work committments, this was critisized despite the fact that my wife expalined that we took the first appointment avaialble to get advice and help underway as soon as possible. The wife came away feeling that the !!!!!'specialist'!!!! was putting all the blame on her and myself and told us that is just the way Dan is and we should learn to live with it!!. I feel this is just a total cop out on their behalf. What we wanted was for some advice on how Dan can recognise when he is getting worse and what factors / stresses make things worse. I Did not expect a 'blame the parents culture'! I feel like it was a complete waste of time and wish i had been there to tell them that.

 

Dan is a very bright lad who is doing very well at school, i do feel that he needs to put the effort in trying to control and recognise the triggers and feel he is capable of this. He has a bit of a chipm on his shoulder as most teenagers do, however he is bright enough to make the effort (or am i going about this the wrong way?)

 

At the moment his tics are vocal noises and mild twitches. We were advised by a specialist some years ago that this is normal for children and that they will eventually grow out of it. That specialist recommended Dan leaves the room and reads out loud to himself to try and control the noises.

 

Any advice / recommendations would be really appreciated.

[Chemar]

welcome Jodi and our other newcomers

 

Jodi, as others have mentioned, I wouldnt hold out too much hope on a neuro that thinks outside of the texbook

(tics=TS=drugs) Hopefully you will find one that is different, but the overall experience here is not too positive

 

most of us have found that seeing doctors who have educated themselves in medicine that doesnt just rely on drugs to suppress symptoms is better. They try to find the causes and work on bringing about overall wellness

 

these include Integrative, DAN, environmental, naturopathic etc physicians

 

if you havent seen improvements with those things you have tried, you may want to consider whether your child has PANDAS induced tics/OCD caused by strep. Also parents here who saw the tics start after vaccines.

I see you have checked into food allergens, but what of environmental? we have had reports of kids affected by everything from dustmite to mold.

 

hope the appt with the neuro goes ok and that they may be one of the rare gems who will help you find real solutions

 

 

--------------------------

 

CZL

just an FYI that haldol CAUSES the movement disorders, especially Tardive Dyskinesia. I am thankful that altho my son was showing symptoms of it, yet after being off the drugs for some time we did see it improve and so even that "irreversible" got better

 

----------------------------

 

hi natanddan1

 

I posted a response on your intro thread below

[guy123]

i just read something about Melatonin being used to treat TD.

 

Supposedly the neuroleptics like Haldol cause a greater incidence of TD than the "newer" class of atypical neuroleptics.

 

Someone mentoned that theyre developing a new neuroleptic that won't cause TD at all but they didnt mention anything other than that.

[Chemar]

Hi Guy

 

I am not sure if zyprexa is classified as new or old but it was when my son was given it that the TD became very evident... after the Haldol was showing signs of TD. It was almost like the zyprexa switched it "on" full force...tongue lolling and other scary stuff.

[CZL]

From the symptom I described above, it is TD??? I do know Haldol can cause TD, but really I don't know what it is exactly.

I heard some kid with Tics do have mouth opening, but I don't know it goes fast or slow.

[kim]

Jodi,

 

I wouldn't expect an MD to discuss any treatments other than meds. Some may want to (mostly they seem to roll their eyes or become very condescending) but are just too uncomfortable discussing an area where they really have very limited knowledge. I don't even feel comfortable taking their advice anymore on whether it's safe to take a supplement with a med. I have been given wrong info on a couple of occasions. I don't think I would take the advice of most reg. MD's regarding supplements if they tried!

Our neurologist was awful when I asked him to review the ingredients in Bontech vits. As always there are exceptions and I hope you have a Dr. who is at least respectful of your questions.

 

CZL,

 

This page gives a little overview of symptoms of TD. You should read up on it. I know I have come across some studies that talked about the use of various vitamins (vit E was one and I think the studies were on Pub Med) when it developes. I also remember that the symptoms can disappear or be "covered up" by increasing dose of the med that's causing it, or restarting if the TD appeared when the drug was discontinued. If you have any suspicion, i would have him evaluated by the prescribing Dr. asap personally, and not let them "up" the dose if there is ANY POSSIBILITY that TD is developing.

There are many other sites that describe symptoms...

 

http://chealth.canoe.ca/drug_info_details....1&page_no=2

[guy123]

Zyprexa is an atypical-antipsychotic (the new class). Haldol is of the old class. there's a bunch more in each class.

[Chemar]

thanks Guy, I had a feeling it was considered atypical

 

I have to say zyprexa was the worst of the worst in what it did to my son...just 2 doses and we had him in hospital it was so bad.

 

the only good thing was that it was "the final straw" after that awful year on meds and was what brought about the decision to get him off the drugs totally

 

I know there are class action lawsuits related to zyprexa problems and I believe there are also now FDA warnings on it

[CarolynN]

Hello Jodi,

 

I just wanted to ask if you had thought of trying Benadryl just to see if the tics get reduced. The reason I say this is many on this forum noticed a decrease in tics when on an anti-histamine. In otherwords, most people find allergies, whether it is food or environmental, are inducing tics so the anti-histamine is lowering the histamine in the body. Here is a post I did on this a while back http://www.latitudes.org/forums/index.php?...p;mode=threaded .

 

Now some people, like Chemar's son, have very bad reactions to anti-histamines and get increased tics. My doctor explained to me this is called a paradoxyl response. Basically in some people, not many, when you try to lower that person's histamine the body reacts with producing massive amounts of histamine to override the medicine. So the person gets a surge of histamine instead of the body being ok with the histamine being lowered. Histamine is actually a neurotransmitter that will affect your other neurotransmitters like dopamine. So when histamine gets increased, with someone who is prone to tics, that person will get more tics. Likewise when the histamine is lowered the tics will be reduced.

 

But I just thought it might be helpful to know if you see a drop in the tics being on the anti-histamine because it would give you more of an idea as to what is going on.

 

Now if it happens to work I would not necessarily suggest staying on it there are natural ways to lower your histamine. Like Apple Cider Vinegar and high levels of Vitamin C. I am sure there are many more you could run by a Naturopathic Doctor.

 

Have a blessed day,

 

 

Carolyn

[Caryn]

Methionine is also an amino acid that would lower histamine.

 

I suggest using an anti histamine that is free from artificial junk. We use Benadryl capsule dye free (contains sorbitol).

 

Our son has a corn allergy and the glycerin causes him to tic.

 

Have you done specific allergy testing? If not, you could consider doing a brief elimination diet just to see if there is another trigger you are missing. At onset of symptoms corn was a big trigger for my son. We didn't realize this until we did an IgG test and it showed the severe allergy. We would have never figured it out otherwise. We had been on a candida diet before that and had seen improvement but nothing compared to what happened after we went gluten and corn free combined. After we learned about corn we realized the the supps we were giving all had corn in them. (even the fish oil-- coromega).