Need help, new member

[ellimac]

My 12 yrs old son was diagnosed with TS when he was 10 yrs old. He took clonadine in the first few weeks but apparently did not work on him. Then we tried another, i just forgot the name but still did not work. The doctor gave him Orap after that. It worked for him for a year (until Jan 2005). The doctor told us to increased the dosage but it's not working anymore so he told us to take Risperdal if we want to. I said "no" after searching the internet. My son is not taking any medication since then. The tics was on and off (hands shaking, little of vocal, body twitching). Last Sep, 2005, start of school, tics increased (more on body), though he could control it at school but not at home. I tried those supplements like B6, the tics is still there but minimal. Sometimes worse but controllable at school. I let him twitch at home. I found an environmental doctor Nov, 2005 and brought my son. He prescribed my son some supplements at first but my son is already tired of taking vitamins and he told me that he feels better without those supplements even his twitching. Tics is minimal, so we stop. The doctor did some allergy testing after a few weekd. We found that he's allergic to soy, green beans and peanuts. We avoid those things. 3rd week of December, need to visit the doctor as my son's body twitch increased a little bit and now with vocal tics. The doctor started injecting streppyogenal to my son. I noticed that he started to have cheek twitching (left cheek). Then after a week, he gave my son cholestyramine. He will take this every night. This is to remove the toxin in his body according to him though the description of the medication don't say that. The shot (injection) is scheduled every week. After 7 shots (Feb 20, .1cc each shots, my son had cheek twitching (left and right), the skin in his lower eyes were dark, no problem on sleeping though. He cannot eat without spilling his food. When the cheek twitch, he tends to scratch it. He cannot speak continuously because of the vocal tics and he will forget what he wants to say. Good thing it's vacation this week. My husband brought him to the doctor Feb 21 because he's getting worse. The doctor told him to stop the shot and see him after 2 weeks. It seems the dosage was not right acording to the doctor. He did another allergy testing to know the right dosage of the shot. And he's asking for another blood test. He was tested last Dec for mold and they found moderate mold in his blood. Our house was also tested for mold but negative. I do not know the doctor but my husband is starting to think of going to another doctor. I don't like to do it because this is already our second doctor, the first was a Neurologist who just prescribe medication to control the tics. As much as possible, i don't like my son to take any medication because of the side effects. I do not know what to do now... continue with the current environmental/pediatrics doctor or go to another doctor. Can you give me an idea how your child was treated by your doctor? I just want to know if my current doctor is doing it right. I want to try bonnie's supplement or other supplements again but i do not know whether i could give it to him while my son is being treated by a doctor. Sorry for my very long letter.. i just feel hopeless right now...

[Chemar]

hi ellimac and welcome

 

So sorry to hear of the tough time you and your son have been going through.

 

In my personal opinion, it is good that he is no longer on those meds.

However, I do not recognise any of those substances that the doctor is injecting so I honestly cant commenton them, but, it just doesnt seem, from what you have described, that they are helping your son...if anything, the opposite!

 

I would hope you can maybe get another doctor's opinion on this. I am not saying your doctor is wrong...but has he ever treated anyone with TS before? It would be good to find a doctor who practices natural medicine who also has experience with TS and who can guide you specifically on this. It is good that you are taking care to avoid things he is allergic too, but there is so much more than just allergies that affect tics.

 

If you spend some time going thru the many pages on this forum you will find the things that others have done that have helped.

 

I have bumped up my thread on this for you...

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

 

as well as the excellent composite thread that Claire started

http://www.latitudes.org/forums/index.php?showtopic=1211

 

hope that gives you some things to start with

 

all the best

[ellimac]

Thanks, Chemar. The doctor's expertise are on ADD, ADHD, Autism. He also treat TS kids. According to his nurse, it's working on his other patient. I know TS treatment is a trial and error thing. Seems we're on the error side.

[kim]

ellimac,

 

I did a google search of streppyogenal, and no results were found. Are you sure of the spelling?

 

Here is some reading for you on cholestyramine.

 

http://www.google.com/search?hl=en&ie=ISO-...G=Google+Search

 

Was any testing done (blood, urine) besides allergy?

 

Personally, whether it's a regular Dr. or an alternative Dr. I feel like it's so important to be as informed as possible, regarding treatments for our kids.

 

Hope you will let us know how you decide to proceed.

 

Kim

[ellimac]

My apology, it's strep pyogenes. It's blood test. No urine test, yet.

[kim]

ellimac,

 

After quickly looking at strep pyogenes, I'm curious if your Dr. is giving, sort of a homeopathic dose? This is a complete guess, as I have no medical training or background.

 

I also see where cholestyramine is sometimes used for high oxalates.

 

I think I would come right out and ask this Dr. what his reasoning is for the use of these things, and what tests or experience he's basing it on, whether you stick with him or not, the use of these things and the reaction your son had, may be helpful to the next Dr.

 

You can find information on homeopathic remedies on page 4 of the biochat notes. Just look down the first page of this forum until you see the thread titled Biochat notes. On the same page, you will find a section on oxalates. Here are the two discussions that your looking for:

 

Tuesday September 13, 9:00pm EST

Amy L. Lansky, PhD

 

Over ten years ago, computer research scientist Amy Lansky began a

journey to try and help her three-year-old autistic son Max. She

found the answer in Homeopathy. As Max gradually made a complete

recovery, she began to study this alternative therapy and eventually

became a practitioner herself. Her best-selling Impossible Cure: The

Promise of Homeopathy

 

 

SUSAN OWENS

Since completing her masters degree at the University of Texas in

Dallas, Mrs. Owens has lectured widely in the U.S, including the

Center for Disease Control and the National Institute of Health in

Bethesda. She has also lectured as far afield as Scotland, England,

Australia, and Norway. She brings into her lectures information she

has gained from ten years of interacting with parents and doctors of

children with autism while she maintained an intense study of the

medical literature, including literature that we need to understand

today's issues, but which got lost in earlier decades. This effort

has been directed mainly at finding the basic science that can tell

us how the sulfur system works: how it is integrated, how it matures,

and how it interacts with other systems. Oxalates appear to be part

of that system, but their role outside the role of binding to calcium

and incidentally forming kidney stones, is little understood.

[kim]

ellimac,

 

I just wanted to add that my sons were taking clonidine and Orap was prescribed for my oldest son when he was about 8. The Orap/pimozide was prescribed by a neurologist at a teaching university hospital where I had taken him for a second opinion. Even at that time (5yrs. ago) Orap just didn't feel right, and I had literally done no reseach at that time (just a little reading was all that was required to be scared to death of pimozide, but....I may have had a different view if his tics would have been debilitating in any way.) We never did give it to him.

 

We stopped clonidine shortly after starting Bonnie's vitamins. My oldest son also takes her fish oil, and we use Mag taurate occasionally, extra vitamin C and extra zinc. Both boys are taking a lot less than the allowable dose according to her dosing chart. We are also using Houston digestive enzymes and Culturelle probiotics. We have had basic blood work which Pediatrician ordered, blood test for IgG food sensitivities, a dysbiosis profile to detect bad bacteria and yeast overgrowth for youngest son(I obtained without a Dr.s signature) , thyroid function for oldest.

 

If you decide to allow the blood test that this Dr. is asking for, you may want to ask him to look at your sons zinc/copper ratio. It appears that low zinc, high copper may be a problem with some/many? of our kids.

[Chemar]

ellimac,

 

I think I would come right out and ask this Dr. what his reasoning is for the use of these things, and what tests or experience he's basing it on, whether you stick with him or not, the use of these things and the reaction your son had, may be helpful to the next Dr.

 

.

 

Just wanted to add that I SO agree!! I think it is imperative to always ask why any substance (pharmaceutical or "natural") is being suggested, and to also ask what it does in the body and about any possible side effects and interactions.

 

Homeopathy is an excellent treatment when correctly used, but sometimes a homeopath can recommend something that is not compatible with the persons physiology and that can be problematic.

 

I have mentioned before that a well intentioned homeopath recommended a remedy for my son when he was 9, and it is now believed that this remedy could have been what triggered his tics a year later. The remedy in itself was not bad, but because he carries the TS gene and had the disposition for TS, this remedy may well have been what brought it out. Ayt the time we didnt know about the TS, nor did we realise that there was a family history of it on my husband's side.

 

I am in NO WAY negating homeopathy...quite the contrary! I know that it is a very beneficial form of alternative medicine and also know from personal experience that it works.....I am just sounding a note of caution as when there are underlying very sensitive neurological issues, it is wise to proceed very carefully and have a team of physicians working with the homeopath so that optimum treatment is given

[Sunshine]

Chemar - I am interested in your son's response to the homeopathic remedy. My son has been given 2 remedies, and I feel that it has brought on an increase in behaviour issues, as well as slight ocd. I was told that it would be out of his system within a month. Yet, your son had a reaction a year later. I am now worried about the future... and I feel SO BADLEY, as I was only trying to help my son. How can I fix the situation???

[Chemar]

Hi Sunshine

honestly, it is really hard to answer definitively on this. My son was on that homeopathic remedy for a number of months...with varying doseage and in combination with other things. In all truth, his tics probably had started before he even went on to it as he had eye blinking and rolling from around age 5. We just did not realise that they were tics--perhaps they were not-- as we were told by the eye doctor that it was related to his vision problems.

 

However, we went to see an Integrative Pediatrician after we got him off the meds that had been prescribed by the neurologist when he got the TS diagnosis ( he had been on the meds for a year and with AWFUL side effects). She is also a licenced homeopath and when she was going thru his medical history she noticed that he had been on the Agaricus homeopathic remedy, and then commented that it was likely the trigger that "brought out" the fullblown TS.

Now, this is not to say that he wouldnt have manifest TS eventually.......she just felt that the sudden onset of severe TS/OCD that he had displayed just after his 10th birthday was likely accentuated by the remedy.

 

It was that experience that truly made me walk a very cautiously with ALL things, whether prescription meds or natural remedies. I asked detailed questions and did my own research before allowing my son to take anything else.

 

In the case of your child Sunshine, the remedies bringing out the OCD and behaviour issues is not necessarily a bad thing. That may well be what they are supposed to have done and as long as this diminishes once he has been off the remedies and his behaviour stabilises, then they have done what they were meant to.

 

If you feel that there is cause for concern, then you should get an opinion from an Integrative physician who is knowledgable about homeopathy to be sure that a "balancing" remedy isnt called for.

 

Hope that helps....

PLEASE DONT PANIC ABOUT THIS!! I truly didnt mean to cause alarm for anyone using homeopathy and stress again that it is a very beneficial form of alternative treatment, and that it frequently works by getting worse before it gets better! I just want to urge everyone to ask questions before just accepting remedies, or supplements, or medications etc especially for children.

[Sunshine]

Thank you Chemar for your quick reply!

 

My panic level is paused... thank you!

 

Although I am worried about my son, I'm glad to have read your postings here, as it does show me how careful we have to be when helping our children. More and more I see how important it is to have an involved doctor... these kids seem to have very fragile body systems.

 

The naturopath did say that the remedy was supposed to worsen things, as it was a way of bringing his body back into balance. He has only had two doses, so we will pause there, and look at other issues.

 

He tested positive for strep two times this New Year (ie... he's a carrier), so unfortunately the timing of the remedies has overlapped with two courses of antibiotics, along with Florastore and probiotics, so it's possible that multiple things are in effect. However, I noticed a dramatic change within 10 minutes of the remedies.

 

I will be sure to procede cautiously, and ask lots of questions.

[kim]

I thought maybe this might be helpful to someone

 

 

SNC=Special Needs Child

The person who shared this, said that there are about 12+ Homeopaths that contribute to this group

 

 

 

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