New to Forum

[Froggy]

Hi Everyone....I'm new to the forum and excited to have found this group that supports the alternative approaches to tourettes. My husband has had tics since 12 and my son just started last month with tics...looking back he has always done a few odd things but we just chalked it up to "odd things that children do" but now it's all coming together.

 

The minute my son's tics started to intensify I immediately started him on the elimination diet along with taking all dyes, chemicals, preservatives, etc etc out of his diet....within 3 days the tics pretty much disappeared!! I still see them now and then but nothing to be concerned with.

 

This is my question....because this is all so new to me...Can I actually breathe and believe that this is what REALLY helps to manage the tics? I would love to hear from mom's or dad's telling me their stories and how long their children have been tic free (mostly tic free) by simply controlling their diets.

 

My other question is this.....I put my husband on the same elimination program....he has been doing it now for 2.5 weeks and hasn't had quite the same results as my son though his tics have improved by atleast 30%.....Is this due to the fact that he his barrel has been full for 18 years with no relief? Maybe his will just take longer to totally settle down......But overall things have been so much better in the last few weeks and just feel so thankful to see the 2 people I love the most feeling better.

 

Thanks for listening and any stories are greatly welcomed!!!!

 

Mom2A

[Chemar]

hi and welcome

 

so glad you are following the natural approaches and seeing results!

 

as you are dealing with genetic TS, it would be likely that there are factors other than just diet that impact tics.........yet, you are certainly doing one of the most important things by eliminating the food additive triggers!

 

My husband also has TS and has less of a dramatic improvement with natural stuff, although it is still remarkable. I do feel that this is likely a cumulative thing...whereby they have a lot more gunk in them from years of bad diet still, it is never too early or too late to start being healthier!

 

I hope you will spend some time reading thru the many informative threads here and also the articles in the main TS section of the website

[Froggy]

Thanks sooo much and it's great to be here!!! I will definitely check out the main Tourettes page and read up...so far I have just been glancing through this area and really feeling good about the decisions I have made so far. I definitely see other tic related areas too.....my sister was just visiting and I noticed his tics increasing towards the end of her visit and now I'm just trying to give him some calm days to come down and relax.

 

We also had made a decision to homeschool last year....(before any of this showed itself) but I am more happy about that decision now due to all the stimulus it can create in someone with TS. We get to pick and choose the events he gets to do with the Homeschooling Organization, so if he is having a bad day we can opt to just skip the event without guilt and him feeling bad about his tics....I feel like it puts him in the driver's seat of his life.

 

I have loved reading everyone's thoughts, feelings, ideas.....and just knowing that their are other parents out there fighting this great fight and not just waiting around for the miracle cure.....we can definitely help make a difference in their every day lives and feel inspired knowing that we are all doing our own investigative work.....MOM'S and DAD's are the best at that!!!!

 

I would still love to hear from parents about how much diet alone does effect their child(ren) tics.

 

Thanks again and look forward to meeting more of you!!!

 

Eren

[kim]

Eren,

 

I just wanted to say Welcome too.

 

I have two sons with tics. Big differences in manifestation, btwn the two of them, so no matter what the genetic factor, I really feel you can have different results with things that may help one person, but not so much in another.

 

Wish I could comment on diet alone, but as Chemar said, I felt that there were more things that were necessary for my boys to heal, than simply eliminating things in their diet that may be irritating.

 

Have you read through this site yet? http://www.bonniegr.com/Interview%20with%20Bonnie.htm

 

Even if your not interested in vitamins/supplements, at this time, this site still has some interesting reading and may help you sort through some of the TS puzzle.

 

I know Jeff has posted about the success that he and his daughters have had with Feingold, and diet restrictions, so I'll be interested to see if anyone else has seen improvements with this alone also!

 

BTW did you notice that your son had any kind of an illness around the time that his tics started to intensify?

 

Kim

[Froggy]

Hi Kim, thanks for the welcome!!!

 

You know he had no illness at all.....I just think his little body finally said NO to all those nasty foods...you know I've done so much reading regarding my husbands TS that when my son was small I was soooooo worried he would have tourette's that I really tried to keep his diet very clean.....this last year however we moved out of state and I think I was trying to make up for the stress I was causing him so I was letting him eat all those nasty sugary cereals and basically letting him have sugar and milk all the time!!!!! when I never did before.....and then BOOM the tics really started taking off. I think for my son it was definitely the barrell was full syndrome.

 

I did start him right away on Omega 3-6-9 along with Cal/Mag/Zinc....that really seemed to help too! I'm soo happy to see all the vitamins posted and things that have helped just incase his tics gear up again I can read what other's have tried....that totally helps!!!...but I'm definitely trying to be diligent with his (our) diet. I've heard a lot about Feingold but I"m not a member but it seems like what all I am doing...taking out all the artificial icks that are in our foods!!!....I'm finding out too that silicates definitely play a role in my husbands and son's diet....we are learning it's a no no!!!

 

I am confused however about one thing I've been reading on this sight.....what is the PANDA thing all about? What is that related to?

 

Eren

[Chemar]

Hi Eren

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

 

research has shown that some kids either develop or have intensified tics, OCD etc after strep infection. This is not just related to strep throat, but also to what is known as stealth strep, where levels of strep in the blood are high, even tho strep throat swabs and symptoms may show negative. The only way to get a PANDAS dx is to have specialised blood tests run which show the levels of antibodies to the strep (Anti-DNAse B and Antistreptolysin titers (ASO)). The throat cultures run also need to be of group A B-hemolytic strep. Ask that the specimen be cultured, not just the rapid test.

 

One of the distinguishing things with PANDAS induced tics and OCD is their sudden appearance.....a dramatic flareup

 

Prophylactic antibiotic treatment is the only way to control PANDAS

 

My son showed many of the symptoms for PANDAS, especially the overnight development of OCD and rapid onset of tics, however his titres were indicative of no strep. He has hereditary Tourette Syndrome and the rapid onset was likely the switch on of the gene when he was 10yo

 

HTH

[Froggy]

Hi chemar

 

Thanks for the info on the PANDA's, that is totally interesting.........You know with our son....he has always had intensified worries, very sensitive and he's always had (I think) what were tics but we just brushed them off as odd quirks until last month when they developed into more of how his dad's tics "look". But I think they were always there......we just tried not to over re-act about it. It sounds as if the PANDA diagnosis is for more of the child that presented nothing until they just showed up overnight, like you mentioned.....but I will definitely look and read more about it now that I understand what PANDA's is about. Thank you!

 

Eren