New to the forum - Any response would be helpful

[Chrisnick]

Hello All,

 

I am new to this forum and I have been looking for some help for a while now. My son (6) has been diagnosed with Tourettes. We have been to NUMEROUS Pediatric neurologists, been on all sorts of meds and even went to an allergist (who basically did the testing to appease us but said there is no foundation to think that allergies have a direct correlation to Tourette's)...I am at a loss right now. My son is on Topamax and risperdal and his tics were somewhat mild and more motor than vocal and about a month ago it flip flopped and now he is mostly vocal and the meds are not helping at all. We called our (4th) and current Neurologist and he said that my son has not been on the elevated dosage long enough to make any difference - see what happens in 3-4 weeks - ARE YOU SERIOUS??? So that is when I started looking into allergy testing, QEEG Biofeedback,dietary supplements and changing his diet. Right now, NOTHING is working. I have gotten 2 calls from his teacher this month wanting to know if there is anything we have not tried to keep him a bit more quiet during school. It is hard for the other kids to concentrate with him making his vocal "HEH,HEH" sounds. Teacher is trying to be very nice about it but you can tell she is frustrated. (as we all are!). I just ordered some products from Native Remedies (tic tamer, Bright spark and focus formula)- anyone had any luck at all with any of these products? I am grasping at anything right now. My husband even suggested hypnosis (his thought is....if it can help someone stop smoking it should help with his tics) not sure I am on board with that thought process yet! I am open to ANY information.

 

Prayers to all of you!

[colleenrn]

Hi. I just wanted to make sure that you are aware of PANDAS and have ruled that out as a cause of your child's tics. Unfortunately, many many physicians are not aware of PANDAS so they do not treat for it. My daughter developed tics at age 5 and we thought it may be Tourette's, BUT it was not. It was PANDAS, triggered by a strep infection.

Has your child had any illnesses that correspoind with developing tics?

Colleen

[Chrisnick]

Hi. I just wanted to make sure that you are aware of PANDAS and have ruled that out as a cause of your child's tics. Unfortunately, many many physicians are not aware of PANDAS so they do not treat for it. My daughter developed tics at age 5 and we thought it may be Tourette's, BUT it was not. It was PANDAS, triggered by a strep infection.

Has your child had any illnesses that correspoind with developing tics?

Colleen

Thank you for the information. I googled Pandas and he has all those symptoms but he has never had strep or scarlet fever. He has had colds where he had to go to the dr but nothing where they did a strep test and gave antibiotics. Thank you for replying to me. I appreciate your response.

[colleenrn]

It is very possible for a person to have strep, but still get a negative throat culture. Strep can be in other places (sinuses, gut, perianal area, ear).

 

Colleen

[mommyfor4]

Hi and welcome! You said you have looked into alternative treatments but have you begun any? Food allergies/sensitivities CAN definately be a source for tics as you will see all over this forum. Many of us find a good multi beneficial and a Magnesium supplement (we use Natural Calm - unflavoured). Unfortunately, many of us have had to go outside of Neurologists and used Enviromental or Naturopathic Drs. Some main food triggers can be found doing elimination diet, picking one food group and eliminating it and then adding it back in to watch for tic increases. Some of the big offenders can be wheat/gluten, dairy, soy and all artificials and dyes. Also processed sugars, high fructose corn syrup, glucose/fructose etc.

It is alot of work, especially in the beginning but many of us have seen dramatic results. Have you got Sheila Roger's book yet, it is a great place to start.

 

Best wishes.

 

Megan

[Lynn777]

Welcome! Sorry to hear what you are going through. I agree with everything Megan said. If the conventional medication is not working, which from experience (not personal, but from reading many people's stories) many times they don't for this condition. I would definitely suggest starting your son on a high quality multi vitamin, magnesium, omega-3's (or flaxseed, if he doesn't react well to fish oil), clean up his diet & also Epsom salts baths (I swear by them) - 2 cups dissolved in a warm bath, soak for 20 minutes.

 

Also, we use the Bontech Supplements & personally I believe they are what took the head off the tics for us. My son improved dramatically after being on the full dose 2-4 weeks. His doctor approved them. Here is the website: http://www.bonniegr.com

 

Lastly, we just started a strict diet in September based on the results of his IgG blood test. He is now off of gluten, dairy, peanuts, citrus fruit and a few other things. It's overwhelming in the beginning, but you do get used to it.

 

My son is 5 and had his first major exacerbation in April. By last week, he was finally at a point where only we (his parents) were noticing his motor tics and his vocals had been gone for two months. Unfortunately, he had a traumatic injury on Monday night and that has stirred things back up again . That said, I still have faith in the natural process.

 

Unfortunately with tics and Tourette’s we have to rely more on our own determination then many of the traditional doctor's out there.

 

Best wishes to you & your son. You are NOT alone.

 

~Lynn

Edited October 22, 2010 by Lynn777

[Chemar]

Hi and welcome

I am working so cannot post long but just wanted to agree that yes, you should look in to PANDAS or other infection trigger , but also keep reading on this board too for the MANY OTHER possible triggers for tics, whether your child is found to have PANDAS or one of the other PITAND infection triggers or not.

 

I have a link in my signature about my son. He had horrible side effects from all the meds we tried, and only showed some improvement with total transformation of his diet, and addition of supplemental nutrients and other natural remedies & treatments specific to his needs. He was diagnosed by one of the "expert" docs not to have PANDAS and to our knowledge has never had strep in any form, but we do know he has had other infections, and so likely he may fall into the PITAND(Pediatric Infection Triggered Autoimmune Disorders) category. We do however have a family history of the Tourette spectrum of disorders, and so my son is diagnosed as genetic TS.

 

also, re school, Tourette Syndrome is covered for education by the Americans With Disabilities Act and so your child is legally entitled to special accommodations and modifications at school. The Tourette Syndrome Association has great info on that

http://www.tsa-usa.o...cation_main.htm

 

I will be back on later if you have any questions

[Chrisnick]

Hi and welcome! You said you have looked into alternative treatments but have you begun any? Food allergies/sensitivities CAN definately be a source for tics as you will see all over this forum. Many of us find a good multi beneficial and a Magnesium supplement (we use Natural Calm - unflavoured). Unfortunately, many of us have had to go outside of Neurologists and used Enviromental or Naturopathic Drs. Some main food triggers can be found doing elimination diet, picking one food group and eliminating it and then adding it back in to watch for tic increases. Some of the big offenders can be wheat/gluten, dairy, soy and all artificials and dyes. Also processed sugars, high fructose corn syrup, glucose/fructose etc.

It is alot of work, especially in the beginning but many of us have seen dramatic results. Have you got Sheila Roger's book yet, it is a great place to start.

 

Best wishes.

 

Megan

Megan,

We are in the very beginning stages of changing his diet. The only thing we have taken out at this point is sugar - it is sooo hard reading all the labels and trying to figure out what is good and bad and it seems like EVERYTHING we normally eat is bad for you. We started purchasing organic meats and eggs and milk. but it sounds like I should omit dairy all together. I will find Sheila Rogers book - I have a book on hold at the bookstore right now called Natural Treatments for Tics and Tourette's: A Patient and Family Guide I hope that helps...anyone have an example of what their child eats for meals? just to have an idea of what is right and wrong types of foods.

[CSP]

Chris,

 

Welcome. Did your son have any vaccines lately?

 

Diet changes can be whole foods, fruits, vegys, meat, ect... Try that for a week and see if there are any changes. when you get a grip on the foods you want to feed him then start taking things out that you think could be an allergy. Don't do it all at one time, or you will end up like I did, crying in the isle of the store not knowing what to buy.

 

My son exploded with vocals after shots and he was on risperdal for 6 months. It took the vocals away about 50% but never all gone. The diet change we made took the motor tics away, and we only saw those come back during stressful times.

 

I believe we saw the risperdal start working after 3 weeks.

 

God Bless,

CP

[faith]

hello crisnick,

just a couple things....you say you think the meds are not working, but being that you say the motor tics are away, you never know, it might be helping with that and you don't realize...maybe the vocal needs a tad longer? not sure, just wondering....I am not exactly an advocate of meds, but after a long road with TS symptoms (even after exploring Pandas and trying out some antibiotics to no avail)....i have had to resort to clonodine this past summer, due to a big wax on vocals. It did not help at all, only served to make my son drowsy and lose appetite, which he cannot afford. That said, I do think vocal tics seem to be the hardest to eradicate for some odd reason. Are you taking him off now, or still on the topo and resp?

 

So i am in the same boat as you with the huh huh in school...its pretty constant right now...altho my son is older (11) and has been dealing with this a while, so he can sometimes try to do it lower, and even try to hold it for a time, but it is not easy. I realize suppression is not necessarily a good thin, and I don't want him to do this at home, but sometimes in social situations, i think its okay to find a way to make it less obvious if at all possible. I don't think it wrong to make them aware of their social surroundings little by little, if only to serve for them to be aware and mindful of thier tics, if that makes any sense at all. .... that said, your boy is only 6, so i'm pretty sure kids at that age are not zero-ing in on his sounds, kids that age are kind of noisy and bouncing around so it shouldn't be too obvious. you will have to be adamant with his teacher that you are working on this, but that your son cannot help this right now and to please be patient while you figure out the best thing for him.

 

funny you mention the hypnotist thing, i was recently researching hypnotherapy...anyone here know much about this?

 

regards

Faith

[Chrisnick]

Welcome! Sorry to hear what you are going through. I agree with everything Megan said. If the conventional medication is not working, which from experience (not personal, but from reading many people's stories) many times they don't for this condition. I would definitely suggest starting your son on a high quality multi vitamin, magnesium, omega-3's (or flaxseed, if he doesn't react well to fish oil), clean up his diet & also Epsom salts baths (I swear by them) - 2 cups dissolved in a warm bath, soak for 20 minutes.

 

Also, we use the Bontech Supplements & personally I believe they are what took the head off the tics for us. My son improved dramatically after being on the full dose 2-4 weeks. His doctor approved them. Here is the website: http://www.bonniegr.com

 

Lastly, we just started a strict diet in September based on the results of his IgG blood test. He is now off of gluten, dairy, peanuts, citrus fruit and a few other things. It's overwhelming in the beginning, but you do get used to it.

 

My son is 5 and had his first major exacerbation in April. By last week, he was finally at a point where only we (his parents) were noticing his motor tics and his vocals had been gone for two months. Unfortunately, he had a traumatic injury on Monday night and that has stirred things back up again . That said, I still have faith in the natural process.

 

Unfortunately with tics and Tourette’s we have to rely more on our own determination then many of the traditional doctor's out there.

 

Best wishes to you & your son. You are NOT alone.

 

~Lynn

I feels so helpless at this point...there are so many directions to go and I don't know which path to take. Everyone has different expriences and you read it and think...oh that sounds promising...then you read someone else's different experience and you think oh that sounds promising and I just don't know what to do next. I thought the allergy testing would tell us he was allergic or sensitive to something and we start there but nothing but grass, cats, dogs, some peanuts and clams came up (clams? go figure- I don't think I will have a problem with clams he won't even eat my spaghetti. ha!)....I just have no clue where to start? Pump him full of vitamins? is it a vitamin or mineral deficiency? Is it environmental? is it food? stress? hereditary? just the luck of the draw or what? I am just so overwhelmed with all the information and not knowing where to go next. You mentioned a IgG blood test...which type of physican would order that? Pediatrician? neurologist? .(no doctor has suggested any type of blood testing at all - I have seen 4-5 ped neurologist and no one has tested him for anything).

 

I looked at the Bonniegr site...is it just the 4 products - the ts-Plus products? (ts-PLUS CONTROL WITH VITAMIN D,ts-PLUS EPA/DHA,ts-PLUS Grape-X,ts-PLUS Mag Taurate). Are they to be used in conjunction with one another or do you pick and choose. Looks like he could benefit from all of them.

 

What exactly does an epson salt bath do to alleviate tics? That is very interesting. I also find that when my son lays down he tics much less, anyone find this? something to do with equilibrium or just that his brain is not that active in a relaxed state.

 

You guys have been such a great help and sounding board. I am now looking for a support group in my area to see if I can connect with people in person and maybe find kids that my son can associate with. He is the only person with Tourette's at his school (according to his teacher). I would love for him to interact with others.

[Chrisnick]

hello crisnick,

just a couple things....you say you think the meds are not working, but being that you say the motor tics are away, you never know, it might be helping with that and you don't realize...maybe the vocal needs a tad longer? not sure, just wondering....I am not exactly an advocate of meds, but after a long road with TS symptoms (even after exploring Pandas and trying out some antibiotics to no avail)....i have had to resort to clonodine this past summer, due to a big wax on vocals. It did not help at all, only served to make my son drowsy and lose appetite, which he cannot afford. That said, I do think vocal tics seem to be the hardest to eradicate for some odd reason. Are you taking him off now, or still on the topo and resp?

 

So i am in the same boat as you with the huh huh in school...its pretty constant right now...altho my son is older (11) and has been dealing with this a while, so he can sometimes try to do it lower, and even try to hold it for a time, but it is not easy. I realize suppression is not necessarily a good thin, and I don't want him to do this at home, but sometimes in social situations, i think its okay to find a way to make it less obvious if at all possible. I don't think it wrong to make them aware of their social surroundings little by little, if only to serve for them to be aware and mindful of thier tics, if that makes any sense at all. .... that said, your boy is only 6, so i'm pretty sure kids at that age are not zero-ing in on his sounds, kids that age are kind of noisy and bouncing around so it shouldn't be too obvious. you will have to be adamant with his teacher that you are working on this, but that your son cannot help this right now and to please be patient while you figure out the best thing for him.

 

funny you mention the hypnotist thing, i was recently researching hypnotherapy...anyone here know much about this?

 

regards

Faith

Hi Faith,

 

At this point I am keeping him on the meds until I have a firm plan in place only because, like you said it might be holding the motor tics under control and if I take him off it might be 1000 times worse. So right now until I know my next step I am going to keep him on the meds. He was on clonidine before as well and it made him very sleepy. He is on risperdone now and that increased his appetite and he is 6 and is a SOLID 84 pounds. That concerns me too so I am working hard to find an alternative to medication at this point.

The kids at school have been fairly patient with him. Some have noticed and asked why are you making that noise and some have shushed him during class because they can't hear the teacher. But the teacher took all the kids on the mat in the class and she explained that everyone is different and she explained his condition and explained they needed to have compassion and understand of those that are unique. So I am glad she did that. I made it perfectly clear to her that I was not going to accept any form of bullying or anything like that so I wanted her to know that I am VERY hands on with my son and his day at school and if there are any concerns she needs to contact me right away. so she is doing pretty well. got an email from her this morning saying his tics are not as prevalent today - that is music to my ears - we might be turning the corner on his peak period!

[faith]

good to hear all that.

did you feel the clonodine did anything re the tics, or no? I did not think so....but I would take the weight gain....i got a 63 pound eleven year old.

 

Your confusion on what to try is definitely overwhelming, but yes, unfortunatley you will have to try and tackle it one or two at a time. whatever you can that seems reasonable, and then add on from there. for some, certain supplements may make a difference, and great that you did the allergy thing already, its just another something to look at. read as much as you can and just go from there. cleaning up the diet is a first good start. i've not had much success maintaining good diet, for the reason of my kid being so skinny all this time, and also some non-compliance due to age....but I can tell you this...since i have somewhat abandoned the dietary restrictions (not completely, but i am not diligent)....my son is probably at his worst....wether it is due to not sticking to a good diet and eliminating the candies and junk, don't really know...but i do know he was better when I was more diligent. So my advice is to start now with dietary for him, so he gets 'used' to this way of eating and won't necessarily rebel later on, that's what I kind of got. If i had known about this type thing when he was more like 5 years old, it probably would have been easier.....

 

good luck.

[Lynn777]

I felt EXACTLY the same way you do. HELPLESS. Where do I start? What do I start with? which kind of doctor should I see?

 

First I want to say that every child is different and you will have to be the main detective and advocate for your son. Here is my personal advice.

 

First, the majority of conventional doctor's aren't going to run the tests we talk about on this board. So, look for a good environmental, integrative or DAN doctor in your area. In the meantime, go organic and cut out all artificial colors, flavors, preservatives, high fructose corn syrup & MSG. Second the neurologist is usually only good for one thing - traditional meds, so don't expect too much additional help from him or her.

 

I don't know if your child is bothered by the tics or has any anxiety issues, but if so I highly recommend getting him hooked up with a Cognitive Behavior Therapist (CBT). Not for the Tics themselves, but for any underlying issues.

 

Here is a quote related to Epsom Salts:

 

What are Epsom salts?

Epsom salts are magnesium sulphate. Salts are just molecules that come together based on having a positive and negative charge. Magnesium has a positive charge. Sulphate has a negative charge, and they dissociate (or go their separate ways) in solution. Sulphate is a sulphur atom surrounded by four oxygen atoms and it has a negative charge. It has all sorts of unique biological functions. Epsom salts can be very beneficial for individuals with neurological conditions and can help remove toxins from the body. In addition it provides a calming effect to the muscles.

 

As for the Bontech. I started my son only on the ts-PLUS CONTROL WITH VITAMIN D. My regular pediatrician didn't believe they would help, but said they wouldn't hurt him. My integrative doctor said he thought the formula of vitamins, etc was fantastic! I started him very slowly and worked my way up because I too didn't want to overload him with vitamins.

 

I then added in Nordic Berries chew-able Omega-3's, again very slowly because some kids tic more on fish oil, but it is a critical supplement for kids with neuro issues. If you see any increased ticcing switch to flaxseed or I think "Chemar" (another poster & the brains of the outfit here) can give you some other options too.

 

I have to run & pick up my little guy from Kindergarten, but if you have any more questions fire away...

[Lynn777]

BTW, I noticed you mentioned "hereditary". Do you have a family history of tics, Tourettes or OCD?