Daughter makes uncontrollable, loud, high pitched noises

[needhelp]

I've been reading threads for assistance with my 8 yr old daughter who has Tourettes. She can't stop yelling. She can somewhat control it during school but after that it is almost nonstop at home and it is to the point where we can't take her out anymore because it is just too loud. We've had her on Magnesium and that is no longer helping. We read about Acetyl L-Carnitine and L-Carnitine and we tried both but it seems that when we give it to her, it gets even worse. My wife and I are so frustrated and we are trying to stay calm because we know she is not doing it on purpose. She even asks us why she is born this way and that just tears us up inside but we are trying to stay strong so she knows that we are there for her and not punishing her for this. I myself has slight tics but I am able to control easily throughout the day and night. If anyone can provide us with any insight as to what else may help control her tic I would greatly appreciate it. PLEASE!

[Pudgeo]

Dear needhelp,

I am not an expert at tics, but I'm sure you will be getting some good advice here soon!

Could there a trigger for the tics? certain foods??

Also could she have been exposed to some viral or bacterial illness to trigger this? (PANDAS from strep?)

Just some thoughts???Sarah

[needhelp]

Dear needhelp,

I am not an expert at tics, but I'm sure you will be getting some good advice here soon!

Could there a trigger for the tics? certain foods??

Also could she have been exposed to some viral or bacterial illness to trigger this? (PANDAS from strep?)

Just some thoughts???Sarah

 

Thanks Sarah. She is allergic to both dairy and tomatoes. She's exhibited tics for the past four years but in different formats (pulling fingers, saying 'Sorry' all the time, light humming, washing hands all the time). We looked at a journal my wife has kept over the years and it seems that whenever she eats a hot dog, a major tic is launched. We try to stay away with all the junk and artificial stuff but it's tough when she's at a friend's party and all they have are hot dogs. We are going to make sure we pack her a lunch when she goes to a party and explain her allergies to the parents. Anyway we just read the L-Carnitine that was prescribed has some traces of dairy so that could have made matters worse. I just bought a dairy-free version from the health store so hopefully that will help. I also bought Gaba which is a calming supplement. I may try it in conjunction with Magnesium to see how that works.

[faith]

hello needhelp, and welcome,

I was going to suggest that dairy may play a factor, and I see you say she's allergic to dairy? So you keep it out absolutely?

 

I would be interested to know if the gaba has any effect. I have been giving that to my son since summer's beginning and felt it helped his vocal, however I am noticing it kicking up again here and there, so am still always fine tuning what could be adding to it, if anything.

 

Also, since you are new here, but you seem to have followed the type things we talk about here, I am interested to know how you came about following supplement and dietary intervention for tics.

 

Thanks

Faith

[CarolynN]

Hello,

 

I am sorry to hear you daughter is going through so much right now. I have to share with you what has so greatly helped my son who has tics and has since he was 3.

 

We found out that my son is highly sensitive to MSG, Yellow Dye number 5 and 6, Red 40, and High Fructose Corn Syrup. The problem with MSG is it is under so many different names. Here is a posting I did regarding the MSG problem and all of its various names (yes there is MSG in certain hot dogs. Usually it is listed as a hydrolyzed ingredient). http://www.latitudes.org/forums/index.php?...aded&start= . You will see this in the post but school hot lunches are a source of a lot of MSG.

 

I created a list of foods on another posting that I found my son could eat. Here is the list http://www.latitudes.org/forums/index.php?...;hl=trader+joes .

 

I have found two supplements to be VERY effective for my son. One is N-Acetyl-L-Cysteine and the other is straight potassium bicarbonate (I believe you can only get the potassium bicarbonate through a Naturopathic Doctor. Although I think Faith posted that Alka Selzter Gold has it in it). Anyhow here are the links http://www.latitudes.org/forums/index.php?...Carolyn+N\ and http://www.latitudes.org/forums/index.php?...Carolyn\.N .

 

After you have read the above posts you will see my son is on many different products. By no means could I ever say that these two supplements alone are doing the trick but they have given him GREAT improvement. He is also taking Bonnie's Grimaldi's TS-Plus which has magnesium taurate and high B vitamins. He is also on some others but they are listed in the above postings.

 

The other thing to consider is candida. This is an overgrowth of yeast in the intestinal system. This seems to be a pretty common problem for someone with tics. So you might want to do a search on the forum about candida because there have been many postings.

 

I am curious if you now what brand of hot dogs you feed you daughter. To me it seems pretty likely that she could be very sensitive to MSG like my son.

 

I should also say when he does get an "overdose" of artificial, MSG, or High Fructose Corn Syrup it takes about a week to clear out of his system. But I have found to get it out of his system faster to give him epsom salts baths (2 cups in a nice full tub of water). You can even do this twice a day. Also I give him an extra boost of B6. He is 7 years old and about 59 pounds. I give him up to 100 mg's on days when his tics start to flare. It helps to get his system back into balance. I would not do the extra B6 every day, but I usually do it about once every week to two weeks). My naturopathic doctor told me to do this for him.

 

I also have to say that when Daniel would get something in him that bothered him I would start seeing symptoms within about a hour to two hours. All of a sudden tics would increase. Although stress causes tics too and so does tiredness.

 

I hope this helps. Just hang in there. I know from my own experience it is very frightening now knowing what to do for your child especially when they think mom and dad should have all the answers already. But there are answers. There is something triggering this and it is just a matter of finding out what it is. What greatly helped me understand what was going on with Daniel was a lot of research on this forum, doing daily food journals to track what he was eating and how bad his tics were that day, and most importantly prayer!

 

 

God Bless,

 

Carolyn

[CSP]

Welcome,

 

I can truly say I know how you are feeling. My son has been very vocal for 3 years, with only short period of times when he was waning. The L-carn. does the same thing to my son makes his tic higher in pitch and more often.

 

i have no advice as to what will help, as we are in the same boat, I can only give support. I'm trying L-tryptophan right now, has not made anything worse so far, and has helped him sleep at night.

 

I did measure my son yesterday and he has grown 1 inch in less then a month, so I do think this plays a roll. Is your dd a slow grower or a fast grower?

 

My son does wane when the growth cart shows a slow down.

 

God Bless, I really hope she wanes soon it is tough for all members of the family.

CP

[needhelp]

Thanks to everyone who chimed in. Here's an update, and thankfully a very happy update. We tried Acetyl-L-Carnitine, L-Carnitine, Gaba, and Magnesium, all at different times trying to use a scientific approach to see which one would work. None of them worked. An employee at our local health food store suggested a detox tea called Flora-Essence. At this point we were ready to try anything. Well the difference was night and day. She took one dose before she went to bed and the next day she hardly ticked at all. She went from ticking up to 9 times per minute to maybe 3 or 4 times PER DAY. We don't even notice it anymore and when she does we realize how much better it is because we don't hear it hardly at all now. This detox tea was a blessing. I drink it myself. We basically decided, instead of 'masking' the problem w/ these other supplements, why not just take the detox tea and let it do what it's supposed to do, which is basically flush the body of all the bad toxins. We truly believe this all started from the hot dogs. My wife kept a journal for the past few years and reading the past entries, all her major tics were set off after eating a hot dog. Besides all the junk that is in a hot dog, we also found out that most hot dogs have nonfat milk inside. My daughter is allergic to dairy so we believe the combination of milk and junk sets off her tics. Anyway I just wanted to let you all know of our experience and what has helped our daughter to almost get rid of her vocal tic. Like I said, we hear it a few times a day but hardly. It's much better than the few times A MINUTE we were previously hearing!

[CSP]

This is wonderful news for you, thank you for sharing I'm sure a lot of parents will try this.

 

God Bless,

CP

[faith]

need help,

glad to hear of the improvement for your daughter. I see you tried some other supps, but could I ask if you had discontinued those supps when you tried the FlorEssence? Or were you still giving any? I'd be interested to know about the GABA -- how long did you give that and were you still giving it as of now?

 

Thanks

Faith

[needhelp]

We really wanted to try a scientific approach and try each one individually to see if one worked better than the other. The only time we combined anything, which was twice, was the Gaba and Magnesium. It seemed to help calm her down temporarily but also slowed down her brain. But the vocal tics never stopped. We did the Flora-Essence detox tea by itself and it has been doing well. We've only used it for six days so far and we just give her one ounce of it mixed with a little over an ounce of hot, filtered water. She takes it right before bedtime. As I said, right after her first dose last week, it was night and day. She is doing so well now. Today she came home and told us she didn't tic once at school. Even throughout the 3 day weekend we hardly noticed it. She probably only ticked 3 or 4 times each day and none of them were as loud as they were last week.

[QsMom]

It is wonderful that you were able to find something that helped your daughter. Every child is so different. If the detox angle is working, i wanted to suggest that you try to add some epsom salts to her bath.

 

Also- Trader Joe's sells a nitrate free hot dog with very few ingredients. I am fairly certain that they did not contain milk. We've tried them for summer bbques, and they actually tasted good too. You might want to give them a try if you have a Trader's nearby.

 

Good luck!

[faith]

re the hot dogs,

I have found a good chicken/turkey hot dog called "Empire" brand (sold in reg supermarkets) that has minimal ingredients in it and seems to be okay for us.

 

Faith

[pmoreno]

It's interesting about the correlation between the hotdogs and the behavior, but I'm still a little skeptical about foods really bringing this on. My daughter was completely normal until after a viral infection in November & then developed severe PANDA like symptoms which over months went away for a normal summer, then returned full force. I had tried various diets with her and it never made any difference. Her behavior didnt get better or worse regardless of what diet I was trying. I think its hard to single out food items because there are so many other factors to consider. Just my thought. Pat

 

 

Thanks to everyone who chimed in. Here's an update, and thankfully a very happy update. We tried Acetyl-L-Carnitine, L-Carnitine, Gaba, and Magnesium, all at different times trying to use a scientific approach to see which one would work. None of them worked. An employee at our local health food store suggested a detox tea called Flora-Essence. At this point we were ready to try anything. Well the difference was night and day. She took one dose before she went to bed and the next day she hardly ticked at all. She went from ticking up to 9 times per minute to maybe 3 or 4 times PER DAY. We don't even notice it anymore and when she does we realize how much better it is because we don't hear it hardly at all now. This detox tea was a blessing. I drink it myself. We basically decided, instead of 'masking' the problem w/ these other supplements, why not just take the detox tea and let it do what it's supposed to do, which is basically flush the body of all the bad toxins. We truly believe this all started from the hot dogs. My wife kept a journal for the past few years and reading the past entries, all her major tics were set off after eating a hot dog. Besides all the junk that is in a hot dog, we also found out that most hot dogs have nonfat milk inside. My daughter is allergic to dairy so we believe the combination of milk and junk sets off her tics. Anyway I just wanted to let you all know of our experience and what has helped our daughter to almost get rid of her vocal tic. Like I said, we hear it a few times a day but hardly. It's much better than the few times A MINUTE we were previously hearing!

[needhelp]

It's interesting about the correlation between the hotdogs and the behavior, but I'm still a little skeptical about foods really bringing this on. My daughter was completely normal until after a viral infection in November & then developed severe PANDA like symptoms which over months went away for a normal summer, then returned full force. I had tried various diets with her and it never made any difference. Her behavior didnt get better or worse regardless of what diet I was trying. I think its hard to single out food items because there are so many other factors to consider. Just my thought. Pat

 

We are just going by what we read in the journals we kept the past several years. Every big tic was prefaced by a hot dog. This dates back 3-4 years. We spoke with some people locally as well as my neurologist friend and everyone agreed hot dogs contain so much junk that any of that junk could trigger the neuro system and hence the tic. I'm sure everyone is different but for our daughter that is what we found every time. I would suggest to everyone to keep some kind of journal so that you can always go back and see what happened the last time a tic came about whether it was related to food, environment, etc.. Thanks to everyone who posted comments and suggestions! So far she's still doing great, hardly any tics at all!

[mommyof2]

needhelp

Just wondered how your daughter is doing on the tea...how often do you give it to her. I would be interested in trying this with my son. Di you get the tea in a health food store? at the point i would try anything to help son!!

Mary