my 8 yr old recently diagnosed

[airbucket]

This is the first communication I will have with other parents who are dealing with this and i am so grateful i found this forum!

 

I have no idea who to go to for help! Briefly, my son is 8, He was diagnosed with Tourette by a psychiatrist last march 2007 due to the sudden onset of tics. Previously he was diagnosed with autism at 2 years old and has language disorder. The Dx of autism was retracted because he no longer displayed symptoms (misDx) - he has a myriad of issues, from behavior problems, high anxiety, OCD behaviors, hyper, aggressive at time, oppositional, but IQ normal, very bright, likes school etc.

 

Currently Dx with Tourette he has tics ranging from vocal gruntings to shoulder raising tics. they do come and go, when we went to the psychiatrist it was because he was innapropriately touching other kids at school, meaning he wanted to touch their eyes, grab their head, pinch them, hug them too tight. He has ALWAYS had those problems/symptoms. Now the psych said those were tourette tics, complex tics involving touching others. He was prescribed Abilify 2 mg and it worked literally like a miracle for a little while. He was a different child at school, the touching stopped, the tics were almost gone. Slowly over the summer we saw a few things creep back in, increased anxiety, irritability, sleep disturbance and a few tics here and there. A few weeks ago things got bad and he began the old behavior of bothering the other students. The psych increased the abilify to 3 mg but NO improvement.

 

We are ina holding pattern now, i dont know what to do, the psych says we can continue to raise the dosage or add another med. This has me really disturbed. WHY would the med seem to work so well and then literally stop working?? why didnt increasing the dosage help? Woudl this indicate that his problems are not with excess dopamine? Are we on the wrong track? I certaintly dont want to continue to increase and increase the med, i dont even like givng him such a strong med ot begin with but i gave in because of the troubles at school. WHO should we go see? i am afraid of another psychiatrist who only is interested in pushing meds and not looking at the WHOLE child. My child also has some odd problems like a stomach ulcer with no presence of e pilori, terrible gastric problems, moodiness, complains of pains a lot - what if something else altogether is wrong?? I ask this because I am gathering that this disorder is like a puzzle and i have to put all these pieces together - i have read many plces that gastric disorders are related to metabolic disorers related to the immune system and so on and so on. Very confusing. Sorry this post is so long but i am desperate to try and get some answers. Thank you all!

[itsme]

Hi Airbucket,

 

First thing, you've come to the right place for help and support. There are terrific, caring people who are extremely helpful on this forum. I received alot of help and support from these people last spring when we were in panic mode. Since than we have implemented many of the suggestions and have benefited enomously!

 

I'm not an expert, but i do know that many of the people on here have used meds with complete frustration and disgust when it comes to treating ts. They now use natural remedies, as we do.

 

We use Bontech supplements (look on the net under bontech supplements). We also have an environmental dr. who guides us with food issues, probiotics, candida's (yeast) ect... So i do think a good place to start is with a good dr. who is qualified with natural (non-drug) treatments.

 

I also highly recommend bontech supps. Also, when we first discovered this with our son i did so many searches on this forum which i found to be very helpful and comforting.

 

I would encourage you to search thru the many threads on this forum, and whatever you're unclear on ask us questions. We will answer if we're able.

[Chemar]

welcome airbucket

 

itsme is so right that just spending time reading thru threads here and searching keywords can help you possibly put those pieces of the puzzle together

 

honestly, if I had to sum it all up in three words it would be "Nutrition is Key" to beginning a protocol to help your child

 

eliminate all junk food and artificial additives and begin a healthy diet with good supplements to suit your child's unique needs

 

try to find a good doctor who sees outside the box and is clued up on the many things that can trigger tics, or intensify them in those with a genetic predisposition, as in TS

 

I cant post long right now but as you begin to research here and elsewhere on the web etc you will find so much info

 

I would also highly recommend the book by Sheila Rogers to help guide you through the maze

http://www.latitudes.org/book.html

[airbucket]

thank you both so much for your replies. It is a sense of relief to "meet" people who understand. I have begun to and will as time allows, look through the forum and read as much as i can. I guess the one question I have is how will I ever know if the psychiatrist is wrong? What if brain chemicals do exist? What if all the psychiatric field says is true? I would hate to find out that indeed dopamine is my son's problem. For now I will continue reading and gathering information from all you well informed people! thank you!

[Chemar]

If the TS dx is correct then yes, just like my son yours is reactive to dopamine, with the seat of the problem in the basal ganglia. It isnt that there is too much dopamine as such but how the system reacts to any increases in dopamine

 

That much is known re TS

 

it is just that the conventional medical protocol is to treat this with drugs

 

here, we try to see beyond the dx to what is triggering the reactivity.

Even tho there is no "cure" per se for TS as yet, there are enough of us here alone to be able to declare that there are better ways to reduce the frequency and intensity of TS tics than with brain drugs

 

especially magnesium, as per Bonnie's and other research, is very important in all this

here is the link to Bonnie's published research

 

the 'triggers' for tics are what we mainly discuss here, and this is covering not only those who have Tourette , but also those who have tics related to other issues, and also those who may be misdx because key factors that are triggering their tics are not known or are overlooked by conventional medicine.

here is Sheila's article on finding triggers for tics

[brink]

My 8 year old (will be nine very soon) was dx last month by the psychologist. The neurologist still won't tag him with Tourettes, but he's more than happy to dx with ADHD. He did, however, prescribe Clonodine and Focalin, one is for TS the other for ADHD. We watched our son go from the happy go lucky high energy kid to a crazy depressed kid. The Focalin was the culprit. We weaned him off the Clonodine, but are now at 1/2 pill only at night. He does very well on the Clonodine, but the dr. had him at 1.5 pills per day and it was making him just too dopey and sleepy.

 

We went to a homeopath and it was determined that he was allergic to dairy, chocolate, and sugar. We cut out the dairy and sugar and have seen a remarkable improvement just in the course of 2 weeks. He's still allowed to have pure semi-dark chocolate, which he seems to be ok with. The facial and body tics haven't changed at all, but his behavior and outlook on life sure have.

 

We're going to try starting the vitamins this week and supplements in a week or so in the hopes that it will help the tics. The biggest thing the tics interfere with is his reading. This is because the facial tics make his eyes bounce around on the page and he gets lost and frustrated. He's a great reader too! Paper or a ruler helps to keep his focus when he bounces.

[michele]

I am so sorry to hear about the struggles you are going through and your sons current condition.

I hope the homeopath Dr. can help you find a way to manage without making him feel so miserable. Did the tics come on all at once? Our neurologist was hesitant to diagnose other then ADHD for school purposes too. I bet if we cut sugar we would see improvements too. My son is on GF/CF diet but I know it would be hard to cut out his GF donuts and cookies which I am sure don't help the yeast. I feel like a terrible mom torturing him with all this diet. Please keep us posted on the homeopath and her suggestions. I know my friend wants me to try hers for my son but I am already invested in the DAN DR. and want to follow through on this. Good thinking with the ruler!

Michele

 

My 8 year old (will be nine very soon) was dx last month by the psychologist. The neurologist still won't tag him with Tourettes, but he's more than happy to dx with ADHD. He did, however, prescribe Clonodine and Focalin, one is for TS the other for ADHD. We watched our son go from the happy go lucky high energy kid to a crazy depressed kid. The Focalin was the culprit. We weaned him off the Clonodine, but are now at 1/2 pill only at night. He does very well on the Clonodine, but the dr. had him at 1.5 pills per day and it was making him just too dopey and sleepy.

 

We went to a homeopath and it was determined that he was allergic to dairy, chocolate, and sugar. We cut out the dairy and sugar and have seen a remarkable improvement just in the course of 2 weeks. He's still allowed to have pure semi-dark chocolate, which he seems to be ok with. The facial and body tics haven't changed at all, but his behavior and outlook on life sure have.

 

We're going to try starting the vitamins this week and supplements in a week or so in the hopes that it will help the tics. The biggest thing the tics interfere with is his reading. This is because the facial tics make his eyes bounce around on the page and he gets lost and frustrated. He's a great reader too! Paper or a ruler helps to keep his focus when he bounces.

[faith]

Brink,

Did you mean you got a dx of ts from the psychologist, and could I ask if this was through the school or privately by you? Are you using that to get any plans for him at school? How long has he displayed symptoms? I ask because I think that may be next on the agenda for us, as my son is really displaying a real lack of focus and follow-thru in class (third grade) and this has always been his problem. His tics are somewhat minor, but the teacher thinks it may be interfering with his focus, so your comment about your son losing his place while reading intrigued me. My son is eye twitching a little right now, but I notice it more when watching tv, so don't really know how much it impacts him at school.....Does the clonidine reduce your son's tics?

 

 

Airbucket,

May I ask the same of you, how long has your child had symptoms and did you have an independent psychologist or through the school?

May I ask what made the psychologist dx your son with autism at such an early age? Did he have language delay? The touching part sounds like possibly asbergers?

 

Thanks

Faith

[kallik]

Dear Airbucket,

You mentioned gastric problems, ulcers, ets. Those raised a red flag in my mind. I've read of people having an allergy to gluten, which causes many gastrointestinal problems. I would think about this possibility too.

[bmom]

I have been thinking that also it might also point to Candida-yeast. Just my own hunch as my husband was told he had an ulcer, but later told that it was leaky gut. I was thinking that is possibly due to yeast. What do you all think? A yeast and gluten free diet would help with both issues possibly. Although if candida you would need to also eliminate sugar and add acidolpholis.

[airbucket]

Airbucket,

May I ask the same of you, how long has your child had symptoms and did you have an independent psychologist or through the school?

May I ask what made the psychologist dx your son with autism at such an early age? Did he have language delay? The touching part sounds like possibly asbergers?

 

Thanks

Faith

 

hi faith:

in answer to your questions, my son has had symptoms since he was 6 yrs old. We went to an independent psychiatrist because any of the ones the school had provided were inadequate and could not have an open mind to the complexity of his symptoms. This was when he was 8, the psychiatrist confirmed that there were no major symptoms of autism or a PDD but all the symtpoms he had added up to Tourette. However, he is also a doctor who believes that Tourette's is much more than a physical problem, it ranges from motor tics to mental tics(not being able to stop thinking about something) to emotional tics and so on. anyhow, the psychologist Dx him at about 2 because he always had this really spacey demeanor, he didnt talk (he still has language disorder) and he had sensory issues, and so on. however the main component that was allways missing is that he was never antisocial. Basically, he didnt talk, got aggressive when upset and had some of the sensory fears children with autism display. As far as Aspergers, im not sure? do they have problems with touching others? Thank you for your response!

[faith]

Airbucket,

I mentioned the asbergers in regards to the touching as it seems my next door neighbor's son was dx with ADHD and asbergers about a year or so ago (he's 6) and I remember her telling me that part about the touching. I always was under the impression it was anti social too, but she says it is a social problem, but not always anti, just inappropriate, like for him, he is overly social, maybe gets too close to people and once he did kind of pat my chest while I was talking with him. She says he would go up to anyone he didn't even know and start talking about anything. She started looking into that because he was becoming more difficult and defiant, mostly in the house, and of course, she was getting lots of phone calls from pre-school. He gets mad fast too, she told me he threw a chair at the teacher because he wasn't listening to him when he wanted her attention. But he is the most lovable child, you'd never think he could have a behaviorable problem. As far as the language you mentioned, I think asbergers have a certain tone to their voice, but he doesn't, although his language doesn't seem fluid, he speaks a little choppy, don't really know how to describe, and when younger he repeated a lot of nonsense sounds in a sing song way, like gah, gah, gah gaaaaaa..... And he's very bright, uses big words sometimes and I am so amused by that, like once I asked him what color hair his teacher had and he said "like bronze",.. that cracked me up... bronze...

Well, that's what I know about that, so I don't know, maybe you could inquire of his psychologist next time.

 

I believe that many of the natural treatments we talk about here could benefit your son, I think some of the things beneficial for controlling his tics will have a benefit on other isses as well. Believe me, with my son, I have a little of this and a little of that too, just getting him ready for school in the morning is more often than not, battle central ... I would start with supplements and diet. P.S. you mention gastric problems, I've heard many autistic children have that, and you may want to look into enzymes for that. Another friend of mine has been giving that to her autistic son (sprinkles enzymes on his food) and has told me it made things in that area much better.

 

Faith

[Chemar]

touching other people or things can also be a TS tic

[michele]

I am reading AD/HD Parenting Handbook by Colleen Alexander Roberts, she says on page 14 " Children with AD/HD are sometimes overbearing with peers. They can't keep their hands to themselves and tend to poke, grab, and touch other children." This may result in physical fights with other children. They seldom see the relationship between cause and effect and places the blame on the other person. This seems like a great resource book for those dealing with AD/HD and gives great suggestions for proven techniques without loosing your temper. This is something I need to work on as I tend to sream alot. Today when they wouldn't get out to the bus and the horn was blaring I was yelling! The mornings are not fun.

 

 

touching other people or things can also be a TS tic

[Chemar]

yes Michele, touching can be representative of other disorders

 

I was just pointing out that it can ALSO be a TS tic, and is documented as such