What should we do first?

[Guest Robin O]

Dan & Maureen, I know what you are going through. I have days when I think "I can handle this" and then I have days when I just want to cry. We have been going through this for 2 years. It does get better. I have had my family on the Feingold diet since August 2003. It took 10-12 weeks to see any improvement. We almost gave up but Jeff who also posted here told me to give it a few more weeks. I am so glad we did. My son has ADHA along with OCD and TS. His ADHD is a non issue now. The diet was hard at first and some days ( like tonight) my son proclaims. ( I wish Dr. Feingold was never born!!) What it helped most with my sons tics is you eliminate so much of the "junk food" that when you slack off or let your child eat something you know may trigger mood swings, tics etc. it becomes so evident what the trigger food is. We found out that Milk is a trigger for tics. We also noticed very quickly that food colors, artificial colors and flavors were tic triggers and ADHD triggers. One other thing i noticed triggered tics is corn syrup. Jeff also has noticed this with his family. Both of theses are allowed on the Feingold but after 6-7 weeks of no improvements I stared eliminated some of the most common food triggers and really noticed a difference. Dr. Rapps book " Is this your Child" (I think thats the title) is great with helping with food elimination diets etc. ACN has a link to her web site and book. I would encourage you to read this. It talks alot about allergies and TS, ADHD etc.

 

Just today we went to an alternative Dr. in our town. He is going to do Fatty acid testing ( Jennifer sparked this idea for us) we also are going to test for allergies by using Magnets ( I would never have done this 2 years ago). You will amaze yourself what you will do and try for the sake of your kids. I still have days when I feel overwhelmed by the food issues, vitamins etc. but it is so worth it all!!

 

Keep us posted on your progress. I feel very hopeful that you will see an improvement in your son. Robin

[Guest Jeff]

Robin, I was really thrilled to hear about your success with the Feingold Diet. The fact that "the ADHD is no longer an issue" - I can imagine the feeling you get just being able to say that. So many times we tried to wish the tics away. My girls even used their birthday-cake wishes to wish the tics away. Well, after changing our diet, we got our wish! Now they wish they didn't have to be on this diet!! As parents though, we welcome the diet as a safe, no side-effect alternative to meds. We can happily claim now that the tics are not an issue.

Yes, the corn syrup can be a real doozy, and so hard to eliminate, as it is in so many things. We have reduced it in our lives, but have not been able to completely eliminate it.

Good luck with the Fatty Acids effort. I look forward to hearing your results. Do you ever post on the FG Bulletin Board?

Best regards. Jeff

[Guest Robin O]

Jeff, I have not posted on the FG board, I will try and do so today to encourage others to hang in there through the hard times. Robin

[dan_and_maureen]

Hi folks,

 

Just a brief update on our progress...

 

We haven't yet received our Feingold materials, but have eliminated food colorings and preservatives in the meantime. We have several natural food stores within walking distance, so it has become a nice family outing. We have seen how food colorings have increased his tics, but we haven't seen a reduction by eliminating them. We are very ready to be patient and are aware, thanks to you posters, of the need to wait to see results.

 

This weekend I cleaned every crevice of Dylan's room, but we need to get rid of his carpeting. He has a nice sized HEPA air cleaner in there, though. We will, hopefully soon, be employing the help of a mold removal specialist to deal with that issue.

 

We are getting in touch with an Environmental practice this week and hope they can help with some of our needs.

 

I have another couple of questions for you all:

 

How did you deal with explaining TS to your child? In particular, how did you deal with the self-consciousness that accompanies TS, especially with a younger child? Dylan does not get made fun of, people (kids, neighbors who don't know) just ask him why he makes all those faces and is always moving his body around unexpectedly, etc. - I can see his awareness about himself changing; any good advice to keep him feeling ok with himself? He seems to be in a very bad, argumentative mood for the past week. We think it's either a slight detox, or perhaps he's experiencing a feeling of anger or unfairness at his condition?

 

How do you handle birthday parties? Dylan has 2 this weekend and we're trying to come up with a plan for him. Besides the obvious, like bringing your own snacks, treats, drinks-are there any methods or strategies you use to help your child not feel outcast, or like he's missing out on what the other kids get to do?

 

Again, thanks for the advice and encouragement. I have to be honest, I feel that this group is our lifeline right now. You have made us feel welcome, like we're not alone, and much more at ease in this difficult time.

 

Dan and Maureen

[Claire]

Hi Dan and Maureen,

 

Don't forget to consider trying no computer or TV for a week sometime, though I know it is especially hard to do with everything else. I will keep you posted if my son's neurotherapy/biofeedback sessions make a difference. He has been to 4 now--10% of the way there.

 

My son never got teased when he did have tics either--too young still. As for treats, as long as it tastes about as good as what the other kids have, he is basically okay. But he just doesn't like being different in any way. What I do is remind him of all the differences many of his friends/classmates have: one has a gluten intolerance, one has learning differences, one has an anxiety disorder. ie most kids have something to deal with. Then I tell him that we are committed to finding the path to make him find perfect neurological health. And, since we believe in God, we also pray for health on rougher nights.

 

Good luck.

Gloria

 

ps I went to the health food store for the first time with my son today.

[Guest Robin O]

Hi Dan& Maureen. My husband has tics so when my son who is 8 started having tics at 6 he knew what was happening. He was not happy about it but felt like if Daddy has them it must be O.K. His Dr. also explained to him what a tic was and that helped also. He seemed accepting of his movements for about 3-6 months and then would tell us he was tired of the tics and wanted them to stop.

 

My son hears the Words Touretts and Tics. He knows a little bit about TS but not details. For now he believes That if you have TS you will have different tics. He also knows it could go away some day. We dont push this idea because he sees his Dad having tics. He knows he can have days with only a few tics and days when he has 1000+. ( this had not been the case since we started a vitamin program) My son usually would ask the questions if he wanted answers. Most people I have talked to about this tell me their kids do not like to discuess their tics. This is so true with my son. When I pick him up from school and I see his tics have increased and a new one has started at school I want so badly to ask how his day went as far as the tics-but If I do he gets very moody and so I have learned to keep silent and he knows he can talk about it if he wants to.

 

The birthday parties and school parties are hard for us. I try to bring snacks that my son can eat. The last 2 parties and Halloween we told our son he could trade in the snacks and candy for a small toy from Toys R Us. He loves that store and that usually works.

 

When we first started the Feingold Diet we did skip a party or 2 just because I really wanted to only eat the recommended food and it was too hard for my son to see the cake with 10 different colors and not eat it!! We would have a special day at the park or beach and really focus on him and make him feel special.

 

How does your son do away from home with his tics and behavior? If the mold in your home bothers him I would think a few days away help. Have you noticed this.

On a side note my husband wanted to let you know he can help you with questions regarding mold. We have a restoration company in NC and he does Mold removal.

You can E-Mail us directly if you would like (Rainbowwil@earthlink.net) He is glad to call you also. We will be glad to talk to you guys on the phone to avoid the back and forth questions etc. Robin

 

P.S. my son was very!!! moody for the first 2-3 weeks of the FG diet. It does get better.

[Guest Neb]

HI There

 

Our son (7) was diagnosed with TS about six months ago by a neuro. His tics involved

repeated jumping, opening and closing his fist, and continuos movement of his lips(mouth), eye lids and grimaces.

Although its too early to say we're completely out of the woods, thanks to the information we read in this forum, Sheila Rogers, and all the back issues of lattitudes, our sons TS is " on the run".

Here's what we did (after many bouts of anguish and sadness at watching our son trying to stop these uncontrollable movements- he used to sit on his knees in class so that his legs wouldnt kick in class).

 

We ordered Bonnies supps. He has been taking them for about 3 months. We originally had a tough time getting him to swollow the big pills but miraculously

one day after we had given up trying to make him take them, he came up and said

" guess what ? I swallowed the big yellow one " since then he has been taking them religously.

 

Although we arent following any particular diet, we have eliminated sugar, artificial flavours and colors, wheat, high fructose corn syrup, soda or drinks with coloring from his diet. This wasn't easy, especially since we have 2 other sons and we implemented this pretty much for every one.

 

With Sheilas' help we found a holistic doctor in our area that helped us confirm that our son was sensitive to the above items.

 

There is plenty more that we can and will do. Its our goal to find out exactly what the cause is for the tics through testing but for now realizing that there is a way to fight this without having to resort to drugs has been very encouraging.

 

Our sons tics are very few and far between now and when they happen we can usually attribute them to a snack he shouldnt have had or when he is in an unusually high stress situation. He is no longer brought to anger quickly and his overall demeanor has improved dramatically.

 

I hope our story helps a little, I know every ones case is a little different and we were probably a little more fortunate in finding something that worked quickly but please understand you are not alone, the feelings of helplessness and not knowing where to start are common to most of us. Just pick one and start and don't stop until you find something that works.

 

God bless