Daughter may have TS

[azhorsegal]

A few years ago my now 7 year old daughter would roll her eyes up to the upper right corner for no aparent reason. We asked if she was doing it on purpose and she said yes, but she was at the age that she really didn't know what that ment. We would ask her to stop and she seemed to get frustrated at not being able to. I told my husband maybe she's doing it for attention, if we ignore it maybe it will go away, and it did. It came back again about a year ago, but didn't last long and went away, so we didn't worry about it. A few months ago she started getting head tics, at first we thought she was just trying to get the hair out of her eyes, but then I noticed she was doing it a lot. Her teacher then noticed and asked her to go to the school nurse where she observed her for a while. She called saying we might want to take her to the doctor to figure out what was going on. I was kind of glad the nurse called because my husband was playing it off as "Oh it will stop, just like her eye rolling" but I wasn't so convinced. Of course the time we took her to her doctor the tics stopped so all we could do was give him a description of what was going on. He checked for strep throat and wouldn't you know it, she had it. He said strep can do weird things to a body and to see if the treatment for strep stopped the tics, letting me know that medications for having tics sometimes has more side effects than what it's worth. So we started treating her for strep and the tics seemed to subside. Two weeks ago they seemed to slowly come back, and we were about to go on vacation. She stayed with my parents for a week while my husband and I went off on a little vacation. I told my husband lets see if grandma and grandpa notice anything. Well, when we got back we noticed our daughters shoulders and arms had tics, and pretty noticeable too. She said her wrists felt weird and she was shaking them to try and make the feeling go away. I held her arm and could feel her little nerves just going crazy. That was it, I was calling the doctor. She also has a slight verbal tic that started a few weeks ago, kind of like clearing your sinus or something, just in her throat, not any words or anything like that. When I first realized my daughter might have TS I was terrified. How could this happen? Seeing your daughter have these tics is just heart breaking to watch and she's starting to get tired of them. I did read about someone here useing Carnosine to slow down the tics so I will bring that up to the neorologist. But I just couldn't stand by and wait for the appointment so I wanted to get your opinion on what my daughter is doing. Does it sounds like TS? Any ideas of what I can do now to help her, while we wait for the doctor appointment, one week from today. (Sorry this is so long.) Oh, she's also VERY sensative and can start crying over the simplist of things. I thought it was just being a young girl, but having a second daughter that is now 4 years old, I've noticed the 4 year old is not even close to being as sensative as her older sister. This may be just a personality trait, but we are sometimes shocked what can set her off. Not sure if this is a trait of TS or not, but thought I would throw that out there too. OK, I'm done. Any words of help would be greatly appreciated from this very worried mom.

[Chemar]

Hi and welcome to Latitudes

 

I would highly recommend that you do some searches here re PANDAS

This is a condition where tics can be caused by high strep (NOT just strep throat) and can only be diagnosed from a blood test........if your daughter has PANDAS, then a prophylactic treatment with specific antibiotics is needed....this freqently causes the tics to go into remission.

 

DO note that many doctors are not very knowledgable about PANDAS and so you may need to do a lot of your own research. Also, until you have ruled out PANDAS, please be VERY cautious about any medications that the neurologist may suggest as these can frequently cause nasty side effects.

 

sorry I dont have time to post more right now but hope that gives you some info

[azhorsegal]

Hi and welcome to Latitudes

 

I would highly recommend that you do some searches here re PANDAS

This is a condition where tics can be caused by high strep (NOT just strep throat) and can only be diagnosed from a blood test........if your daughter has PANDAS, then a prophylactic treatment with specific antibiotics is needed....this freqently causes the tics to go into remission.

 

DO note that many doctors are not very knowledgable about PANDAS and so you may need to do a lot of your own research. Also, until you have ruled out PANDAS, please be VERY cautious about any medications that the neurologist may suggest as these can frequently cause nasty side effects.

 

sorry I dont have time to post more right now but hope that gives you some info

 

Thanks, I will be sure our doctor tests for PANDAS, especially since she's already been diagnosed for strep once already. I'm already on the defensive about medications for TS, as it seems more natural treatments seem to work better, and I really don't want my daugter on meds if at all possible. But also understand if it's PANDAS she's going to need something to clear that up.

[azhorsegal]

Hi and welcome to Latitudes

 

I would highly recommend that you do some searches here re PANDAS

This is a condition where tics can be caused by high strep (NOT just strep throat) and can only be diagnosed from a blood test........if your daughter has PANDAS, then a prophylactic treatment with specific antibiotics is needed....this freqently causes the tics to go into remission.

 

DO note that many doctors are not very knowledgable about PANDAS and so you may need to do a lot of your own research. Also, until you have ruled out PANDAS, please be VERY cautious about any medications that the neurologist may suggest as these can frequently cause nasty side effects.

 

sorry I dont have time to post more right now but hope that gives you some info

 

Chemer - I've been doing some research on PANDAS and learned it can't be tested through any lab tests (like blood tests), but just oberservation and history of the child to determine if he may have PANDAS. Of course I could be wrong because I just started researching this, but I got my info from http://intramural.nimh.nih.gov/pdn/web.htm , which is said to be the official website of PANDAS. It does make sense though for my daughter because the tics seemed to start when she was diagnosed with strep throat, but it doesn't explain the eyes rolling up (maybe that was a totally different problem). But I don't consider my daughter to be OCD, just has tics.

[Chemar]

Here is some balanced info re PANDAS

 

http://www.tourettesyndrome.net/pandas_overview.htm

 

A blood test IS a very important diagnostic marker as it shows strep ANTIBODY titres and therefore gives a good indication of whether there is strep in the system. often the strep infection does not manifest as the classic strep throat and so simply doing a strep culture from a throat swab may not reveal the PANDAS case.

 

Although NIMH is a very informative source, unfortunately govt sources are not always at the cutting edge re breakthroughs in diagnostics and treatments.

 

We have some posters here (Ronna and Alison, amongst others) who have had much success with PANDAS treatment. My son did not have PANDAS and so I have more limited personal experience with this

[azhorsegal]

Thanks for that link, will definitely read every bit of it. I noticed today it was her whole body that seemed to tic, including her legs. She said to me today after seeing a cartoon x-ray picture, that she wishes she could get one, so doctors can find out why her body twitches. It broke my heart to hear her say that. Waiting until Friday to get it checked out is going to be really tough. I'm thinking of just calling her pediatrician to let him know what's going on, see if he wants to see her again, because at this point, I don't think she'd stop to where he couldn't see it for himself, she does it all the time now, and I now have it on video tape.

[Jeff]

My oldest daughter started at right about the same age, and had many of the tics that you describe. Hers was not related to Strep, though, and we never had to investigate PANDAS.

Her tics calmed very soon after we began to eliminate artificial colors and flavors from her diet. We've been restricting those ever since, and her tics have since then been very mild - a non issue.

If your daughter eats foods with artificial colors in them, you might want to start replacing those with "natural" products. For example, candies like Skittles and Twizzlers, cereals like Trix or Fruit Loops - all are full of those colors, like Red #40, Yellow #5, etc. Those additives are real tic-triggers for us, and for many other folks.

My daughter used to be in constant motion... I could feel her twisting and clenching when she would sit on my lap for books.... After a few weeks of removing those additives, the difference was incredible.... she would sit as still as a rock!!

She is now 14, and things are easier, but we still limit those additives as much as possible. I've noticed the difference in my own tics, too. Caffeine and lack of sleep are also big triggers for me.

Hope that helps.

Jeff

[deagar]

Out of curiousity, how did you find out about the artificial color tic-triggers...was it food elimination or delayed food sensitivity blood test?

[azhorsegal]

Thanks Jeff, I will start doing that to see if it gives my daughter any relief. It's been so heart breaking watching her these past three days as her tics have really picked up. Monday was really bad, Tuesday was half as bad and today she started getting bad again. I did notice that late in the evening they seem to be the worst, when she's tired. Someone else mentioned MSG could also trigger the tics, have you heard anything like that? The artificial coloring and flavor seems to be the most common theory, so I will start taking away the artificial colors away and see what happens. Thanks so much for your advice as this is all knew to me, and it just breaks my heart to see my daughter go through this. Has your daughter been diagnosed with Tourette's or did you just do your own research?

[Chemar]

The worst food additive tic triggers seem to be

ALL artificial colourings, artificial flavours as well as artificial sweeteners like Nutrasweet(aspartame) and Splenda(sucralose), sorbitol. Also try to avoid HIGH FRUCTOSE CORN SYRUP and MSG (monosodium glutamate) and chemical preservatives like BHT etc

 

 

Sheila's article on triggers is very helpful too

http://www.latitudes.org/articles/finding_triggers.htm

 

 

Deanna, there is sooooooooooooo much anecdotal evidence pointing to those food additives as somehow triggering tics, OCD, hyperactivity etc that it is pretty much a given that they have a negative impact on most people. In our case, I had read about this many years ago in a health magazine, and removed them from my son's diet even before we got an official TS diagnosis...........the reaction he has when he sneaks something with these things in is so dramatic that I am in no doubt as to their bad effects. I am actually really pleased to see that he now reads all labels on foods to ensure that he is not going to swallow somethingbad! Our whole family avoids them too.

[Jeff]

We found out about the colors and flavors largely out of luck. My oldest was having a particularly bad time of it, and we read an article about how the colors and flavors could affect behavior and sometimes tics. We realized that during the last week she had had a lot of that stuff (Twizzlers, Reese cups, gummy worms, as I recall). So we decided to cut that stuff out and see if it helped. In 2-3 weeks, it was like day and night. In our search for natural candies, I found a store called the Squirrel's Nest. The owner told me about the Feingold Program, which eliminates those additives, but mostly for behavioral issues - like ADD, ADHD, etc. I became a member which gave me access to their annual publication of "approved" products - that is, those that are free of the colors, flavors, and certain preservatives. I have been a member ever since. Their website is feingold.org, if you are interested in checking it out.

We have never gotten a diagnosis of TS - even I have not. However, my nephew was diagnosed when he was young, so I know it's in the family. I have had tics since I was young, but never knew what they were, until my nephew was diagnosed. I was probably about 42 when I figured it out, and coincidentally my daughter was starting to tic around the same time. That was over 7 years ago. My youngest daughter also tics, but we were already on Feingold by the time she started, so she has never gotten to the level that my oldest had to suffer through.

Chemar mentioned Corn syrup. That stuff is EVIL !! My youngest reacts behaviorally to CS. The effect it has on some people is unbelievable. And the difficult thing is that they use it in SO MANY products!! It comes in many names... Corn syrup, high fructose corn syrup, fructose, maltodextrin, and more....

Sorry to go on so long!!

Any questions, let me know.

Jeff