very new to tics- help

[floridamom]

Was so glad to find this forum. I have a 11 yo daughter who has gone from having minor tics ,starting age 8, which came and went to having a terrible tic including violent shoulder shrugging and head bobbing. The shoulder shrugging started a couple of weeks ago, starting midday and increasing in frequency and severity until bedtime. Had an appointment with typical Dr. who wants to put her on Clonidine. My husband and I would like to see what else we can do. It is obvious from this forum that there are many other things that can be tried- but there is so much information here that I don't know where to start. I started to eliminate dairy, sugar, artificial sweetener, etc.. yesterday. But continued reading has shown me that the apples and grape juice that I allowed may contribute also. Does anyone have any advice for us on a systematic approach that you have used? It is hard to eliminate everything at once. I admit to the terrible diet that our family is used to. Will do whatever is needed to help her. She is so miserable.

[mommyof2]

Hello and welcome

I am new to this forum but wanted to suggest something that helped my son. He is 9, he started having minor tics(which we thought were habits) at about 4 or so. they were simple things like blinking, mouth stretching, hand smelling...just enough to make us wonder why are you doing this. Then about a year ago I noticed the arms and shoulders going. We took him for cranial sacral therapy through a massage therapist and all the body twitches stopped. Now we just have facial tics and lately he started a sqeaking noise. I noticed when I took him for the treatments the facial would relax for a few days but when we started to do chiropractic and cranial together to save some money by using our insurance, he would not have the same results. He started the eyes looking up and over, they would tell me he is going through a cycle. I do want to take him again soon just for the cranial sacral therapy and see if it helps the noises...I ask him why he is doing them and he says his throat is tight, which she can do mouth work on hm and it does help.

 

I just recently ordered the kids calm I read about on here and hoping that helps once we start. I have been using magnesium capsles and mixing it with his yogurt but have not seen a change, only done it for about 2 weeks so maybe it takes a bit to get in his system

 

Hope this helps for now...i am sure someone wtih more experience will be along soon with advice

Mary

[faith]

Welcome Floridamom,

My son is now eight and we have been using the natural treatments for little over a year now. I am still on the path, but I think we are currently doing pretty good. I am always a little tongue tied on what to advise new parents who are asking for advice, because you will be finding out about many different subjects and issues as you read over many of the posts. So... I think the first thing I would suggest is to read as much as you can about the things that interest you, and then read some more.

 

I tend to lean towards cleaning up the diet as an absolute first, and that means removing artificial everything, and try to cut out as much junk as you can. Stick to whole foods for now, like oatmeal, cereals from healthfood stores, fruits, vegetables, and cut out obvious "fake" stuff like juices with high fructose corn syrup, candy and even fast food for now. See where you stand after a week or so, and then you can begin to eliminate certain food groups to see if that has any effect, as in the "elimination diet". As far as supplements, the first thing to try is probably the magnesium (kids or natural calm as mentioned above is one that many here use). Whatever you can do to heal any irregularities of the systems of the body, I believe, will probably have a beneficial effect on the reduction of tics.

 

Have your daughter's tics always been around, or does she have bouts where it disappears for a while? You say she is shoulder shrugging right now? Has she ever had any vocal tics? Also, have you ever tried any type of treatments or diet control or meds?

 

And I am just curious, as you say she is 11, has she recently had any vaccinations? That is something we were discussing here recently for that age group as a possible trigger for exacerbation of tics in some kids? Thanks, I am sure you will find some answers here. And please ask as many questions as you like.

 

Faith

[Cum Passus]

Hi Floridamom,

 

Welcome, I don't have anymore to add, but do think the natural calm is the best place to start.

 

Faith had some really good points, and I do believe natural raw foods is healing in itself.

 

I'll add your daughter to my prayers as this is a hard age to deal with being different.

 

C.P.

[Dedee]

Glad you found us Floridamom. Something you didn't mention is what is going on in your childs life prior to the onset of the tics. I wondered if your child was showing symptoms of illness, be it viral or bacterial before your noticed the increase in the tics. Does anyone in your family have a history of tic disorder? Had your child been exposed to anything out of the ordinary prior to the flare up? Maybe a vaccine or any changes in the house-hold enviornment. These can be big triggers. I know it seems over whelming to think of all of those possibilities now, but if you can just keep it in your mind, you may begin to see a pattern over time. It is important to realize that you don't have to figure out everything right now. Although it may feel life threatening, it isn't, but it is life altering , which means you need to take good care of yourself so that you can take good care of your family. Everyone here will be very supportive and you will learn so much. The only other suggestion I have is you may want to try epsom salt baths. That is very relaxing and seems to help a great deal with tics. Good luck and keep us updated.

 

Dedee

[Florida]

Hi Florida mom,

Diet is so important for kids and it seems like almost every food geared towards kids is bad for them. Unless you have your daughter tested for allergies it's hard to know what and what not to feed her. The biggest culprits I have found so far are "artificial food colorings" (not sugar), "deli meats or processed meats", "MSG",

"artificial sweetners" & "processed cheese". Even if kids can tolerate these "foods", they are not good for them. These are a good bunch to cut out altogether.

 

Start keeping a log of everything you feed her and how she acts afterward. Dairy is fine for my kids although I try to buy organic products.

 

It's hard keeping small children on a healthy diet so you might have to get creative. Try to include your daughter in the "fun" preparation of her food and make it look "pretty" with colorful veggies and fruits. Be prepared for a big mess...

[patty]

Floridamom,

 

Welcome!

 

Just want to also mention that epsom creme also works well to calm the tics. You can get it online, www.kirkmanlabs.com. The creme is great when your child doesn't want to soak or that you are not at home.

 

Patty

[floridamom]

Thanks so much for all the ideas and encouragement. This latest flare up happened at about the same time that school let out for the summer. Lots of changes with that. Lots of trips to the neighborhood pool, soccer camp each morning for three hours, dietary changes, more screen time. No vaccines lately.- No history of tics in the family that I am aware of. We have not previously tried any treatment , diet control, or meds. There didn't seem to be a need as she was never bothered by it in the past- everything was very minimal. Most of the time we didn't even notice a problem. I don't think there are vocal tics, although she has been sniffing lately- but also says that her nose is stuffy and her ears are clogged.

Have most of you had IgG testing? I saw the thread from a couple of years ago regarding what your children are allergic to and the effect of removing those things from the diet. Is there anyone here who has not had some success with certain food elimination?

Dr. had us come in for strep test yesterday- blood and throat culture. We'll find out about that next week.

Has anyone here had any first hand experience with Clonidine? Would like to hear the good and the bad.

I can't thank all of you enough for your support.

[Cum Passus]

Hi Floridamom,

 

My son is 13, and last year I did notice tics were getting worse at the end of the year too.

 

It got even worse in Aug. Did you notice an increase in the fall as school was to begin?

 

I have not had my son do the IGg yet. He has had the scratch and Ige tests so far. I was going to do the IGg but have not because my son is doing so well, and we will have to pay for the test. Somewhere around $500-$1000. At this point I'm not sure we could get him any better with removing foods, as he looks and acts very normal now.

 

We did do the Clonidine Patch for about a month. At the time of his explosion his body was jumping around all over the place. The patch really helped calm his body , but did nothing for his vocals. After a month he was so calm we took him off the patch, and after alot of prayer his body never went back to being jumpy. In fact he does not motor tics, just vocal and some eye tics that really don't even show up all that often. His dad also has vocal and no motor tics. The Patch made him very tired, but less so once he had it on for a week or so. His handwriting went down the drain on the patch. He has very nice handwriting for a boy. I don't know if he was crabby because of the patch or because of the TS dx, but at that same time he was not our good boy. Could have been turning 12 too.

 

Hope that was helpful.

C.P.

[floridamom]

Thanks Cum passus,

Good to hear some info on Clonidine. We are not going to try it yet. Want to do as much as possible with diet etc first. I have not really taken notice when the various tics started or stopped. I do remember the eye tic stopped after I got a new vacuum and thoroughly worked over the entire house including using it to dust everything in sight. That was way back- the first thing I ever noticed, but didn't even think of it as a tic- I was not really aware of tics or tourettes. I have learned alot in the last couple of weeks! Thanks especially to this forum.

fl. mom

[Chemar]

hi FLmom

 

just wanted to add a few thoughts here

 

one thing to remember is that with eliminating offending foods from diet...all artificial food should be eliminated BUT if your child isnt salicylate or lactose or gluten sensitive then there is no reason to take those foods away completely...you can certainly eliminate each and note if there is improvement tho

 

other thing is........you mentioned swimming and soccer camp....chlorine and pesticides!!! may well be triggers to the tics there

 

sorry for the hurried post but I have to run

[floridamom]

Thanks for the thoughts. I think that she does have a lactose intolerance. We have eliminated milk for now. We had been using lactaid in the past- for her stomach. Is Chlorine a trigger for many kids? What about a higher level of activity in the day? Can that bring on increased symptoms? So glad for your help!

Flmom

[faith]

floridamom,

Yes, just to clarify, when I say eliminate certain foods and food groups, this is just a trial to see if you see any improvement with the elimination of things that could be a problem for your child. It is alot of trial and error. And this may take a while. For instance, corn products seem to be a problem for my son, but these don't show up immediately. Could be next day or so or just after consuming too many in short period of time. My feeling is that small amounts here and there may not be a problem, but when it starts adding up, then its not good and I have to cut back. We have had the Igg type testing, so I have used that as a guide.

 

When you said some of the increase in tics started after school ended, did you mean this year or last? And what kind of dietary changes did you mean? Like, less structered meals and more summer indulgences like juices, ice cream and junkfoods? I ask because that could indicate that if she started to consume much more of what she may be sensitive to, then the overindulgence could have contributed to the increase.

 

Faith

[floridamom]

Faith,

The tics increased just a few weeks ago- School got out mid-May. Dietary changes were pretty much what you said. More junk- We have taken that stuff (the junk) completely out for four days only, but things don't seem to be getting any better. I know it can take awhile, though. Things were mostly just bad in the evening, but today she couldn't sit still even in the morning. You mentioned juices- Are these a common trigger? She is still drinking juice.- No sugar or color added. We are going to stay out of the pool for awhile to see if that helps, too.

Thanks so much for your help,

FLmom

[patty]

floridamom,

 

Just want to add that based on my past experience, i think sometimes it takes weeks or months for you to see improvement. It one's bucket is fulled, it may take more than diet to see improvement.

 

I don't want to sound discouraging, on the contrary, i want you to continue to look for ways to remove triggers, rather from food or environmental sensitivities or allergies.

 

I don't want to overwhelm you. As i have been through the process & still am still going thru it. It does get easier over time. Tackle everything in phases, and next thing you know you are on your way to recovery. And i have to tell you, my son is having more & more good days, and when he does have more symptoms, it is short and no one seem to notice it except for me. So there is alot to be said about using alternative treatments.

 

 

Patty