I have tried it all, drugs do not work for TS

[Guest Guest_Barbara]

I have a 14 year old son that has suffered with TS since he was 7 years old.

It all started when he was having problems seeing, which is what I thought. He would pull his head to the side and his eyes would go the other way. I thought, He can't see, so off to the doctor we go, to check his vision, and guess what? Perfect vision. My pediatrician then asked if I wanted to go through some testing and I agreed, as I was concerned for my childs health. After extensive testing, his doctor told me he was almost certain that Justin had TS. He sent me to the Childrens Hospital in New Orleans to see a childs neurologist for help with Justin's diagnosis. She also determined it was TS. By this time Justin had already started different tics and I had no idea they would just move all over his body.

 

This doctor then put Justin on Haldol. Bad mistake. Justin would sleepwalk really bad, and I was now worried that he would get out of the house at night, and this was not good. One of the side effects of this drug. This medication never even helped him.

We returned to the Hospital and he was switched to ORAP, and t his finally worked a little for Justin. By the time Justin entered the 4th grade, his academics went downhill and he was always saying he was stupid and could not understand or remember anything. We then went back t o the doctor and his dose was upped. As Justin got older his dosage would be moved up to jsutify the weight gain. In the end he was taking 8 ORAP a day, and his TS seemed to be under control, although not completely, but he was struggling with life in general. I received a call from his school to tell me that he was in the office, and was complaining of hearing voices to kill himself. He was admitted into a hospital, and I do not have to tell you which kind, I was devastated. Come to find out he was taking way to much ORAP and this was a side effect. He was in a hospital for 2 weeks as they winged him off of the drug. I was only able to contact 2 times a week and visit on Sunday. This was the most awful thing for a parent to go through.

I was told then that the drug was not good for Justin, and today Justin is Drug Free, but his TS is horrible. He has severe jerks of the head, neck, arm, face, you name it he has it. He hurts alot from the jerking, and wants help. He begs me to find something to help him, and I refuse to put him back on psychotic drugs, that are used for schizophrenia, to me it made him act as if he had that, hearing voices to kill himself????

To mention this, Justin gained lots of weight while on this drug, slept all the time and was horrible with his academics.

He has now just completed the 7th grade and is doing so much better, and lost all the weight he gained since being off of ORAP.

I just wish someone could help JUSTIN and I, as I have no IDEA what to do to help my son. He tells me everyday, You have to find someone or something that will help me. He has even said, I know that they have to be doing studies on the treatment...Can I be a DUMMY for them?

Seeking Any Advice and Help

I am Desperate for my childs good health TS free

Barbara

[Chemar]

Hi Barbara

My son is 13 and has been med free for almost 2 years on a supplement regimen which is having remarkable results.

 

He was on meds (including the dreaded Haldol) for 1 year and it was a nightmare....he had horrible side effects and his OCD intensified......he was far worse off on drugs.

 

If you read the other threads here on Ts & vitamins/supplements as well as the Any Alternatives thread you will see what I posted yesterday about the alternative treatments that have helped my son.

 

There really IS hope......med free!

My son has his life back instead of it being totally controlled by his TS/OCD

[Guest Jeff]

Hi Barbara, Sorry to hear about what you and your son have gone through. As I have said in several other posts on this board, we have had great success controlling TS tics by eliminating certain things from our diet.

My two daughters and I have tics, but if we stick to our elimination diet, they are not an issue.

Specifically, we follow the Feingold Diet. When we stick to the diet, our tics are under control. If we eat too much of the "bad stuff", we start to tic again.

Briefly, the additives that we try to avoid most are Artificial colors, Artificial flavors, and certain preservatives (TBHQ, BHT, BHA). We also noticed reactions to naturally occurring salicylates (in tomatoes, apples, oranges, berries, grapes, etc). Most people experience a "de-tox" period of up to 6 weeks when they start Feingold. During that period, you might not see much improvement; in fact, things can get worse sometimes. However, once you get through that de-tox, things can get Very Different! For many people, the improvements are dramatic - like night and day.

 

I would encourage you to try eliminating all of those things from your diet. It's not easy at first as you will find that you need to replace so many items in your pantry! But it does get easier once you have been doing it for a few weeks and have some regular staples identified.

The Feingold program (feingold.org) offers a food guide every year, which includes thousands of food products that have been researched and approved for the FG diet. There is an initial membership fee of about $75, but the annual fee is much less after that. In addition to the food guide, you receive a manual of information, regular newsletters, and access to a very active "Bulletin Board", where members offer ideas, support, recipes, etc.

 

I hope you'll consider this option. It might help your son.

Best regards. Jeff

[lherbert]

Dear Barbara and Jeff- Barbara- I know what a desperate feeling you have trying to find something that works for your child. I, too, went to a child neurologist at Children's Hospital in New Orleans. She recommended Haldol, but my husband and I are too fearful to go that route. (Just out of curiousity, was your doctor's name Dr. Weimer? ) In the meantime, we have found the Feingold diet which is my next question to Jeff. Jeff, we have initiated the diet, but have found that my child has reacted to the Kellog's brown cinammon poptarts. Did you find some inconsistencies with your tics when you went through Stage 1 of the program. We are also finding that sometimes my child has her tic when she first awakens in the morning and she hasn't eaten or drank anything yet. You said there is about 6 weeks of a detox period. What makes the tics increase during that time. Thanks for any input. lherbert

[Guest Jeff]

Hi lherbert, I saw your post on the FG Bulletin Board.

The de-tox period is hard to understand, but there really seems to be something to it, based on the many many comments from other FG-ers.

My youngest also reacts to those **%%## Pop Tarts. I've concluded that it's the Corn Syrup. That really upsets me as they are the only ones that are FG approved. We let her have a half of one occasionally, and can usually see a reaction, but not too bad. Of course, she's 8 years old and can tolerate more than your child.

Don't know what to say about the first thing in the morning tic.... Post that question to the FG bulletin board.

Out of curiosity... does your child tic while she's sleeping. I don't, and my daughters do not. Before FG, when they were tic'ing badly, I used to look at them while they were sleeping and think that they were finally getting some relief from the tics.... those were sad days.

Hope to see you more over on the FG BB. Are you reading it periodically?

Jeff

[lherbert]

Jeff-Thanks for the input. This is all a start for us on the Feingold. (Barbara-you may want to try it out.) I will post on the feingold website as well. As far as the tics go during sleep, on the most part she does not. But there was the time when she had the bad tics before I linked it to the orange juice she was drinking and she was so tired and fell asleep and she ticced a little when she first went to sleep. Otherwise, you can imagine- I have NOT given her any more juice. Also- I am wondering if because of the reaction to the juice and poptarts if there is a tic because of there being a relation between tics and sugar content. I read somewhere that sugar/fat increases the body's production of histamine. lherbert

[Guest Jennifer]

May I reccommend that you read Dr. Jaqueline McCandless's book

"Children with Starving Brains". While food additives are certainly something to avoid they are not neccessarily the entire problem, not to mention that being on a strict diet for the rest of your life is extremely difficult. The reason people over react to additives is because the body is allready burdened by pesticides, heavy metals etc. Tic disorders fall in the autism spectrum. Dr. McCandless does a wonderful job laying out the causes that debilitate our children's systems as well as means to get the body back on track. Our son has tics along with OCD. We tried the diet for quite some time and are currently on a strictly organic diet, most eeryting I make from scratch. I must say that the real improvements were seen after months of cleansing (we started with a mild colon cleanse and since then have been using natural antioxidant products, MAXAM nutraceuticals has a great product called PCA-RX) we've seen further improvements with supplements. Sam-e is a great natural alternative for OCD, depression, anxiety etc. Our son used to have horrible mood swings, but since the introduction of SAM-e he is very calm and happy. Maxam has a liquid spray Sam-e which is absorbed much more than the pill form and easier for young children who have a hard time swallowing pills. One more thing about Dr. McCandless's book, I would reccomend the second edition-it's the same as the first, but she has included new research and results.

Our son has improved tremendously. It has not been an easy road, but we stay focused on our ultmate goal, our prize- Our child's health!!

Never give up!!!!!

[Chemar]

Excellent book.

Excellent advice.

 

cleansing and detoxing is so good, especially if you have been on meds...and then a strong supplement schedule for maintenance. And making foods from scratch where possible eliminates so much of the stuff that can trigger tics.

 

I really feel from our family's experience that this has been a multi-faceted approach to health.....because it has incorporated everything from the physiology to the environment to the psychology......

 

People with Ts so often have those troublesome spectrum disorders too...OCD,AD(H)D,SID(Sensory Integration Dysfunction) and often some of the mood issues of depression, anxiety,rage,defiance etc etc and these can influence the tic severity and vv.

 

All these things need to be modulated to balance things out and that is where the blending of all these many natural treatments, eliminations and other therapies plays such a vital role.

 

We have also found acupuncture and reflexology to be VERY beneficial to my son when tics or the other disorders are on the wax........it seems to have a stabilizing and relaxing effect that reduces the severity and duration .