My own pain

[Decorah]

So I'm fairly new. My son, age 8, has had tics for two years. They have gone from mild to marked and now, just as school is approaching, they are overwhelming. He is a great kid; just wants to have fun and watching him tic is so painful. Today it was full shoulder shrugs, head bobs, throat clearing, gasping...

 

I just don't do well with it. He is not on meds. Psychologist said to wait to medicate until he needs it; not us! But I just feel so sad for him and crazy about all of it. We live in Mpls. and are going to Children's Hospital's Integrative Medical Center soon. It specializes in alternative therapys. I'm not comfortable prescribing herbal remedies on my own. There are so many, they are so unregulated and I worry about how they all might interact. Is anyone else this lost and stymied and tired?

 

So scared about what will come when he is in school trying to contain it all. And how his self esteem will suffer....

 

Thanks for listening.

 

Decorah

[Spring]

Hi Decorah,

 

Welcome! I understand how you feel. Has your son done any lab test, such as heavy metals, OAT test, etc. Please take your time to review the following thread.

 

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

 

I learned a lot from this board. Please do not hesitate to ask questions. People here are wonderful and helpful.

 

Best wishes!

[Andy]

Hi Decorah,

My son has had all of those tics that you mention and more. After much testing and on going of testing, we have our son on an elimination diet, vitamin/mineral/amino acid supplements, do epsolm salt baths nightly, and are currently detoxing. Turns out he came up with toxic levels of lead, mercury, etc....

He improved with every new thing that we did but it is a long road but a road worth the travel. Read the posts on this site. There is alot of information that you may be of interest of you. Oh by the way, after 5 months of heavy detox my son has went from having high levels of lead in his body to none detected and he also detoxed 4 other metals out as well.

[Chemar]

Dear Dedorah...

 

(((hugs))) from a mom who has been where you are.

 

Five years ago, my son's tics and OCD were so bad that he was totally debilitated by them, and was even hospitalized . We tried meds out of desperation for a year but they only made things worse. Then, after much prayer and research, I began to learn about the many alternative treatments that were beneficial and we began, with the help of an excellent team of Integrative physicians, to implement them and withinn weeks my son had stabilised and was showing improvement. His tics and OCD are now so mild that they are barely noticeable.

 

It is so good that you are going to see the Integrative medical folks....in the meantime, as the others have suggested, read here as much as you can and print out what you feel may be useful to take with you to your appointment. Claire's composite threads are excellent.

 

I have put together a summary of my son's treatments here, which I think you have already read, but maybe taking it with you to the appointment will give the doctors some additional info on what worked for someone else

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

 

It is so very hard to watch our children suffer and feel so helpless....but take heart Decorah.....so many of us here have seen positive results from these therapies that there is much reason to have hope that your son will also benefit.

 

more ((((hugs))))

[Jeff]

Decorah, One thing you might try right away is eliminating artificial flavors and colors from your son's diet.

My oldest daughter started to tic around age 7 or 8, and hers became bad enough that the teasing started at school, and she was starting to withdraw socially.

We heard that artificial flavors and colors can trigger TS-related tics. We discovered the Feingold program (feingold.org), followed the program, and within a few weeks her tics had subsided dramatically. We have now been on the program for 6-7 years, and the tics are no longer an issue. When we deviate too much, we see the effects, but we can clean up our act, and get back on track fairly easily.

It's certainly not the answer for everyone, but it surely has worked for us. Changing our diet was difficult at first, but it has become a lot easier since the beginning. The biggest triggers for us are the artificial colors (Red #40, Yellow #5, etc.) If your son eats Trix or Fruit Loops, drinks Kool-Aid or Hawaiian Punch, snacks on Twizzlers or Skittles, etc, etc...., those could be affecting his tics.

If you want any more info or details, let me know and I'm happy to share. You can also check out the website.

Best of luck. Jeff

[Gina]

Decorah,

 

I think we can all relate to your pain. We have all been there and ocassionally revisit those feeling as TS has such ups and downs. I understand not wanting to give your child things that you don't fully understand (ie herbal remidies/vitamins etc) I was there not long ago and I sat and read posts on this site and took notes and cried and laughed all to myself for months before I ever posted a word. I too was very weary about using vitamins and herbal remedies. What I did do that was very helpful was diet changes. So out came the artificial colors/flavors, corn syrup, caffiene, I limited sweets, and try my best to go organic and preservative free. Now that was by no way the easy way out especially for me who had to spend hours reading labels in the grocery store. But it got easier and I knew that there was no way it could harm my son by making these changes. I also started giving my son a good multivitamin. Those changes alone made a great improvement on his ticcing. It's a great place to start. From there you just take it at a pace you and your child can handle.

 

Just know we have all been there. Thats one of the great things about this board, it has a ton of info. and a whole lot of heart!!

 

Best of luck,

Gina

[mmazz]

Hi Decorah and welcome. I read your post and have experienced the pain, hurt and the anxiety that everyone here has felt. The ups and downs that pain us all is as vast as the universe. However, these feelings are normal for any parent who truely cares for their child. We all want that "perfect child" and when the realization ocurs that they are not perfect, it is painful. The difference on this forum is that our children have outward known imperfections. They are the ones that strangers see or stare at from time to time. Or perhaps we notice to much and plainly think people stare when they are not. I see more or notice more than anyone and it drives me nuts sometimes, and other times I am more accepting that it will waine. Other children have quite imperfections that are life threatenting or debilitating, while others appear perfect but life can and will alter them in otherways. So you see none of us are perfect and that realization does help us become better parents. One girl's boyfirend wrote on this forum a while back that her parents did not support her with her tics and years later she sufferes from low self esteem and he fears her to be suicidal. He/she blamed her parents for not helping her and not accpeting her for her problem. I read that post and took that one to heart. If my child was born with a huge nose or some other imperfection what lengths would I go to help him. Would I seek plastic surgery or would I teach him to love himself? THere are no difenitive answers. Every child is different and some can handle issues better than others. But as parents we have to be supportive and help minimize their issues without being extreme. I belive in mind, body and spirit and when all three are in balance we live healthy balanced lives. The western diet is horrible and I agree with everyone here on this forum that the artificial ingredients are killing us all. The lack of raw foods within our diet is damaging and nutrients are missing that our bodies require. You sound like a loving mother who is accepting of your child and will seek out every avenue to aid him. God Bless you on this journey. Just remember to take care of yourself from time to time.

 

Be Well;

 

Marie