Can someone help me with my daughter's Tourette's?

[anjelictwins]

I just found this board and thought I would try posting. I tried reading the pertinent information but there is so much I dont feel its answering my specific questions - so I'm sorry if I post a repeat question!

 

I have a 15 year old son and twin girls who will be 9 in December. My son was diagnosed around age 7 with mild tourette's. His was really mild and the tics were mostly blinking and other facial movements, maybe a shoulder shrug here or there but nothing major. We tried prescription meds while he was in middle school but he didn't find they actually worked so we stopped them. I didnt want to try them unless the tics bothered him. Nutrition wise, I have always tried to keep my kids away from red dye and even though I'm about to finish nursing school and do have some knowledge of nutrition it is definitely not nearly enough!!

 

With my daughter, she started out with licking things - even walls! This was probably some time around last summer so I knew long before her diagnosis that she also had it. She was finally diagnosed by a doctor a few months ago with the ADHD/Tourette's/Anxiety triad which really do seem to fit her perfectly. I have an identical twin (my daughters are fraternal) and both of us exhibit these same triad of symptoms as well as her father's side of the family (so she was doomed from the start!!). The doctor never mentioned specifically it was genetic but in our case, I really believe there would be no other cause. She is on Adderrall, which I feel she needs and does well on (we have tried other ADD meds) but it does worsen her tics. The doctor also mentioned taking Melatonin to help her sleep and she is also on Clonidine at night. With the Melatonin, I tried it myself and I swear it gave me severe PMS symptoms even though it was that time and I feel my daughter also has similar side effects - is that crazy? So we just stopped it. My daughter's tics are considered mild, and they are, but the licking is, at the very least, unsanitary!! Her twin sister ended up with meningitis last September and I really feel this was due to her sister's licking of everything. She is literally like a 9 month old right now, every single thing she picks up goes right to her mouth. I realize we are supposed to ignore it but this has become so unhealthy and potentially dangerous that I just can't.

 

Going to nursing school, I live with my parents right now and they are pushing me to take her to a therapist or something to alleviate this licking. I have tried to explain how she can't help it etc. but they really dont understand. I'm not sure if they are as concerned about her health as they are about their embarassment.

 

She has never had any blood work done other than her usual CBC probably a couple years ago. I'm sure her regular pediatrician would help me out with any tests that should be performed but I dont know where to start. I'm going to nursing school full time (done in December!!!) and the kids are starting school this week so I really have almost no time for anything else!!

 

I wanted to mention are her eating habits with possible associated sensory issues. She is so "picky" that there are very few foods she will eat. She is a real trooper and will try her vegetables (we have to force her to take a couple of fork fulls a night which she may or may not gag on) but she has a very limited diet of things she will actually even touch. She even goes through periods (although they are short as I refuse) of saying she HAS to have soda (pop), she's almost obsessive about it. So I feel as though food elimination is very difficult.

 

In school, she is having a very difficult time. Behavior wise, the Adderrall helps tremendously (although the tics get worse). Many of her letters and numbers are still being written backwards and the school is concerned she is still exhibiting this behavior. She seems to have a left-right confusion. And, of course, she has issues with tags on her clothes; owns a million pairs of shoes but will only wear one pair due to the way they feel on her feet. There's probably more things I can associate with sensory but that's all that comes to mind right now!

 

So, I'm lost in the world of Tourette's and sensory issues and I feel there is no light at the end of the tunnel. Any advice would be so appreciated. I myself have ADD (probably a bit of Tourette's too!) so I readily admit my time is not well spent although I am going to try to read through as much of the info on here as I can. I'm sure I left out some piece of pertinent info!

 

Thanks so much!

Ann

[Chemar]

welcome Ann

 

from what you have posted there sure does appear to be a clear genetic component to all this

 

I am not sure what specific questions you were asking on tho? so dont want to interject with my views if you are set on certain things and not asking questions on them.

 

hoping you will find the answers you seek here ....we sure will all try to help

[anjelictwins]

Thanks so much for your reply! I welcome any suggestions or opinions anyone has to offer. Honestly, her diet is on the poor side although I live with my Italian mother who cooks dinner for us every night while I'm in school lol so she its not like she's eating fast food every day and I try to limit her from as much sugar as possible. My problem is I'm a picky eater myself so I have sympathy for her. I clearly need more direction as far as diet goes as well as any other things you all have found helpful. My main goal at this point is to just get the licking to a minimum. I'm just so worried for her health due to her licking. I read a bit on the vitamin supplements which I am terrible about reminding her to take. Although, I think that may have been for the better because as I realize now the ones I have are a generic flintstones vitamin that have lots of artificial colorings in them. I think if I get the right supplements I have to force myself to remind her to take them. I need direction and would be so grateful for any suggestions (or opinions!) anyone has to offer! I dont get offended very easily lol.

 

Again, thanks so much for replying!

 

Ann

[ilovedogs]

Well, you'll see here that most people recommend simple diet changes as the first line of assistance. Mainly removing junk from the diet. Not just the food colorings but the high fructose corn syrup, the MSG, the nitrates and nitrites, and artificial sweeteners like equal and splenda, etc. Basically, stay away from anything that's artificial or chemically created.

The next step would be to try to be consistent on staying on the multivitamin and make sure it doesn't have any artificial sweeteners, etc. The next thing that has helped some would be to get her on a magnesium supplement. Please do some research on these boards to find information on magnesium. Many people here use a supplement called Kids Calm but there's also a supplement called Natural Calm made by the same company that can be used. We find that the magnesium supplementation helps us all fall asleep and stay asleep most nights.

Also, many folks find that they get good advice from natural or environmental doctors but many times they are not covered by insurance. You may want to look into this, as well. I'm sure other folks will come on here with recommendations. Welcome to the boards!

 

Bonnie

[Betty04]

I just found this board and thought I would try posting. I tried reading the pertinent information but there is so much I dont feel its answering my specific questions - so I'm sorry if I post a repeat question!

 

I have a 15 year old son and twin girls who will be 9 in December. My son was diagnosed around age 7 with mild tourette's. His was really mild and the tics were mostly blinking and other facial movements, maybe a shoulder shrug here or there but nothing major. We tried prescription meds while he was in middle school but he didn't find they actually worked so we stopped them. I didnt want to try them unless the tics bothered him. Nutrition wise, I have always tried to keep my kids away from red dye and even though I'm about to finish nursing school and do have some knowledge of nutrition it is definitely not nearly enough!!

 

With my daughter, she started out with licking things - even walls! This was probably some time around last summer so I knew long before her diagnosis that she also had it. She was finally diagnosed by a doctor a few months ago with the ADHD/Tourette's/Anxiety triad which really do seem to fit her perfectly. I have an identical twin (my daughters are fraternal) and both of us exhibit these same triad of symptoms as well as her father's side of the family (so she was doomed from the start!!). The doctor never mentioned specifically it was genetic but in our case, I really believe there would be no other cause. She is on Adderrall, which I feel she needs and does well on (we have tried other ADD meds) but it does worsen her tics. The doctor also mentioned taking Melatonin to help her sleep and she is also on Clonidine at night. With the Melatonin, I tried it myself and I swear it gave me severe PMS symptoms even though it was that time and I feel my daughter also has similar side effects - is that crazy? So we just stopped it. My daughter's tics are considered mild, and they are, but the licking is, at the very least, unsanitary!! Her twin sister ended up with meningitis last September and I really feel this was due to her sister's licking of everything. She is literally like a 9 month old right now, every single thing she picks up goes right to her mouth. I realize we are supposed to ignore it but this has become so unhealthy and potentially dangerous that I just can't.

 

Going to nursing school, I live with my parents right now and they are pushing me to take her to a therapist or something to alleviate this licking. I have tried to explain how she can't help it etc. but they really dont understand. I'm not sure if they are as concerned about her health as they are about their embarassment.

 

She has never had any blood work done other than her usual CBC probably a couple years ago. I'm sure her regular pediatrician would help me out with any tests that should be performed but I dont know where to start. I'm going to nursing school full time (done in December!!!) and the kids are starting school this week so I really have almost no time for anything else!!

 

I wanted to mention are her eating habits with possible associated sensory issues. She is so "picky" that there are very few foods she will eat. She is a real trooper and will try her vegetables (we have to force her to take a couple of fork fulls a night which she may or may not gag on) but she has a very limited diet of things she will actually even touch. She even goes through periods (although they are short as I refuse) of saying she HAS to have soda (pop), she's almost obsessive about it. So I feel as though food elimination is very difficult.

 

In school, she is having a very difficult time. Behavior wise, the Adderrall helps tremendously (although the tics get worse). Many of her letters and numbers are still being written backwards and the school is concerned she is still exhibiting this behavior. She seems to have a left-right confusion. And, of course, she has issues with tags on her clothes; owns a million pairs of shoes but will only wear one pair due to the way they feel on her feet. There's probably more things I can associate with sensory but that's all that comes to mind right now!

 

So, I'm lost in the world of Tourette's and sensory issues and I feel there is no light at the end of the tunnel. Any advice would be so appreciated. I myself have ADD (probably a bit of Tourette's too!) so I readily admit my time is not well spent although I am going to try to read through as much of the info on here as I can. I'm sure I left out some piece of pertinent info!

 

Thanks so much!

Ann

 

Just want to mention that pica (eating non-food items)/licking has been associated with nutritional deficiencs (especially iron). Just something to think about if you have not already ruled it out. HTH, Betty

[kim]

angelictwins,

 

 

I have a son with an extremly limited diet and he is also a sugar craver and a gagger. He seems drawn to wheat..... Townhouse crackers, freezer pretzels, Pepperidge Farms fish crackers, recently pizza crust which he would never touch before, etc. His diet is a bigger concern than tics as his have always been on the mild side too. I know first hand how hard it is to do anything with food changes in a child like that.

 

Anyway, just wanted to say welcome. I'm sure as you read thru the threads here, you'll see you/your children are not alone and start forming many ideas as to ways to improve things.

[peglem]

I was just wondering if chewing gum or sucking on a hard candy(I know- sugar!) might help to alleviate the licking a bit. Keeping her tongue busy with something else? Is there something she could carry with her to lick whenever she gets the urge? She could keep it in a baggie. I'm just trying to think of ways you could reshape the behavior to make it safer and maybe a little less bizarre looking to the rest of the world.

 

As far as help with sleep/anxiety, valerian root works pretty well for my daughter. She's had major sleep issues all of her life. I do use melatonin with her as well, but the valerian will work w/o it.

 

As far as the genetic component, it may be a genetic reaction to an environmental trigger. (Let's hope its not tomatoes-that would be hard for your Italian mother!)

[lynnie1264]

Welcome anjelictwins!!!! I know it can be so confusing trying to figure stuff out from scratch. Grrrr!!!!

 

All I could do immediately was to cut out his coke, avoid artificial colours and flavours, chocolates because of the cocoa {i found one white choc that doesn't have cocoa in it so he can still have a treat.} He watches his sugar intake, he still has it in his cup of tea of morning but has very few lollies. He doesn't have any obvious food allergies but haven't had him tested for environmental stuff yet.

 

Peglem... you mentioned the valerian root... I tried that for my son but it smelt and tasted disgusting {smelled out the whole cupboard even with the lid on}... is there a secret to making it more palatable? I have him on "Kalm kids" {I'm in Australia} and unlike your kids calm there, this is made up of HOPS... as in beer hops. It's supposed to be an age old calming remedy. My boy has mild tics but his anger outbursts can be a problem at times, and he finds these tabs work, and I agree.

 

Hope things work out ....

Lyn.

[peglem]

Welcome anjelictwins!!!! I know it can be so confusing trying to figure stuff out from scratch. Grrrr!!!!

 

All I could do immediately was to cut out his coke, avoid artificial colours and flavours, chocolates because of the cocoa {i found one white choc that doesn't have cocoa in it so he can still have a treat.} He watches his sugar intake, he still has it in his cup of tea of morning but has very few lollies. He doesn't have any obvious food allergies but haven't had him tested for environmental stuff yet.

 

Peglem... you mentioned the valerian root... I tried that for my son but it smelt and tasted disgusting {smelled out the whole cupboard even with the lid on}... is there a secret to making it more palatable? I have him on "Kalm kids" {I'm in Australia} and unlike your kids calm there, this is made up of HOPS... as in beer hops. It's supposed to be an age old calming remedy. My boy has mild tics but his anger outbursts can be a problem at times, and he finds these tabs work, and I agree.

 

Hope things work out ....

Lyn.

 

Yeah, the valerian root stinks like crazy, but for some reason, my daughter has no problem taking it! I have considered actually, giving my daughter a few sips of wine, her anxiety is so bad...I do have a valium rx for her, but try to avoid using it as much as possible.

[CarolynN]

Hello and welcome!

 

 

I am sorry to hear your family 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. He by the way would chew on things like crazy (shirts, pillows, toys, shopping carts, EVERYTHING) before we did the below program. I had never linked the chewing with a reaction to what he was eating. I just thought them as seperate issues. But they were very, very much connected. Anyhow here is what we have found out and rather then retyping it I just copied it over from another post I just did recently. I really hope this helps you because it so greatly has helped out family.

 

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