my 8 yr old recently diagnosed

[kim]

Reading thur the PANDAS threads, something keeps occuring to me. I have read, that antibodies are too big to cross the blood brain barrier, in most cases. I don't know if I have mentioned this before, but I have a particular interest in the role vaccines may play in this whole TS picture

 

I have read in different places, that infection and aluminum (and other heavy metals) are capable of comprimising the BBB.

 

I ran across this, last night, as I was pondering this. I thought some of you may be interested in reading it.

 

I know Ronnas has mentioned, removing caesen helped her son. I think Alison has done some diet restrictions, too? I thought this article, helped to lay out some associations nicely. Hope there is something helpful here, to someone.

 

http://www.immuno-sci-lab.com/2003_cat_page105.htm

 

http://student.biology.arizona.edu/ad/glossary.html

 

http://en.wikipedia.org/wiki/Blood-brain_barrier

 

However, since antibodies are too large to cross the blood-brain barrier, infections of the brain which do occur are often very serious and difficult to treat.

[michele]

yes Chemar, I didn't mean to respond directly to you but to the question that was being asked. Touching can be representative of other disorders and I thought it was a coincidence that this was brought up in the book I was reading yesterday. I was just pointing out that it can (also) be common in AD/HD, and is documented as such in this book. Also I wanted to note the book as it seems like a good reference and many of the PANDAS children seem to have the AD/HD symptoms too.

 

Michele

 

Kim, thanks for the articles. This is definately interesting and the connection with MS. I heard they were researching a drug to use with PANDAS and or Autism that is a MS drug named Riluzule. http://health.groups.yahoo.com/group/PANDA...ort/message/909.

 

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

[amy1]

My daughter is 8 years old with a recent diagnosis. I just ordered and read the book by sheila rodgers---what a great resource and really gives you hope....hope to find out what is causing it, how to treat it, etc....i am no where near a total understanding but i am trying hard to find answers. stay strong and go with your instincts. we went from a traditional neurologist telling us to "suck it up and know it's going to be a long road and there's nothing to do about it" to finding a more holistic approach with doctors---there are good doctors out there who are open minded...it may take a while but investigate it. hang in there!

[brink]

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

 

Actually, no, the school was not involved at all. We didn't want those "labels" on him whatsoever. He's had issues most of his life and we had no idea why. Everyone kept telling me "oh, he's just a boy-they have lots of energy". He would itch and rub himself (not inapporpriately, but facially or around the top of his head) whenever he was concentrating, nervous, focusing, etc. If he had to be in front of people he would be worse, even though he enjoyed being there. I figured it was just a "nervous twitch". But in my heart, I just KNEW he wasn't "normal". Finally, in March, after months of squeaking noises and facial grimmaces, he began the gutteral sounds and grunting every time he ate. That turned into whistling while breathing in, more facial movements, almost constant throat noises and getting in trouble at school for "touching" or "pushing" other kids. There is so much more to the story than that, so this is the abbreviated version. I couldn't stand to be around him anymore because of the noises, particularly the "chomping" sounds and the squeaking.

 

I just KNEW something was wrong. I took him to the neurologist and he said right off the bat "oh, he has ADHD". Talk about a punch in the gut! While I suspected ADHD as an underlying role, I had already done enough research on Tic Disorders to basically diagnose him myself! He said "well, I can't rule it out, but we have to see if these twitches are habits or true tics." We started to see a psychologist who recommended a full evaluation to make sure there wasn't a learning disability thrown into the mix. It was during this testing that they noted the multiple tics, movements, and sounds. They made particular note about him not being able to hold a pencil properly and his handwriting suffered because of it. He writes like a K-garden student.

 

I went back to the neurologist and gave him the info on the findings because the stupid psychologist didn't get them there yet (over 2 weeks later!!). The neurologist said "oh, I can see why they'd think that, but I'm still not quite convinced". Oh geez, I thought. Does he have to have a full out tic attack in front of you to convince you? I made a list of the tics we saw in him over the course of 2-3 weeks and he just passed it over. Like he really wasn't listening to me.

 

Ugh, so of course, this sure didn't help my faith of the medical community.

 

 

One thing we were sure of was to NOT involve the school system. Once they have a label it's forever, at least here it sure is. Granted, we have a great district who is more than eager to help kids in need, but we didn't feel that he needed that kind of help. We are now homeschooling which is helping tremendously. He can work when he can focus and in a less structured environment. He's been doing so much better and barely even misses "school".

 

Anyway, that's my story and I'm stickin' to it, lol

[faith]

Hi Brink,

thanks for sharing that info. I understand about the school, altho I'm wondering how you scouted round that, I mean did the teacher never notice the tics or the behavior and mention about it? As I mentioned, my son has some distraction issues in class and most times doesn'tfinish all his classwork, so the teacher has noticed the tics and wondered what impact that was having on his work. I'm scared of the label thing too, but I am going to go ahead with the testing and recommendations for the 504, I had inquired advice about this here last semester and I think now its best for him. Its too bad you couldn't get the dx just for the TS so you could persue the same route. Any chance of getting another doctor (not the dope ) Also, could I ask if weaning off the clonidine has been successful? Did that not help with the tics at all? Have you started any supps and has the dietary restrictions helped any with the tics or just behavior so far?

 

Faith

[Chemar]

Although my son is now doing virtual highschool because of the health limitations with his Crohn's disease, yet I must say I disagree with not involving the school system when needed.

 

we had him privately tested by a school accredited edu-psychologist, and got his 504 in place as soon as he entered public middle school (he had an IEP in private elementary)

My son is an A student and so this wasnt done re learning disabilities, tho he does have ADD (no H)

 

It was one of the best things we could have done as the accommodations for his tics, OCD etc were exactly what he needed.

 

And as it is revised every school year, with a meeting to decide on the accommodations between parent and all teachers plus special ed, it didnt "follow him for life" but rather preceded him to make his time at school a LOT easier than it would have been had he not had the 504

 

even now, as a state registered student on virtual highschool, he gets time/pace allowances for his health issues etc

 

I guess to us a "label" wasnt a negative thing

He has Tourette Syndrome and being upfront about that at school was VERY beneficial

[michele]

We are going through the same process right now with the school. I debated about staying quiet and waiting and watching how he did too. Dr. Murphy told me to get him OT help so I decided to go to the school first. I just don't see this PANDAS syndrome going away anytime soon. However, I have found some great books that walk you through the school issues and how to design a special program with the school. Let's face it if our kids have some special needs they deserve the help the school can give them. I am not saying they have to be learning disabilities but attention trouble and tics and ocd can affect their school performance. Two books to check out are Mitzi Walsh Tourett'e Syndrome Finding Answers and Getting Help, and AD/HD Parenting Handbook Practical Advice for Parents from Parents Alexander -Roberts. I was amazed at how much Mitzi Walsh talks about PANDAS in her book. It is awesome because books dealing with PANDAS are hard to find. The AD/HD book has tons of help for working with the school too. It is hard in kindergarten to have your child identified by the school as having problems but I realize it is more about my ego in that regards. I want him to get the most help early on that will make him successful in school so he has a positive experience.

Michele

 

 

 

 

 

 

 

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!

[ad_ccl]

I stayed away from anything formal for the last 3 years for the fear of labeling etc. We always just talked with the teacher. What I learned is not all teachers are alike and not all will follow through with requests - even when they say they will - they are busy people and sometimes just forget - when something formal is not written down. This year I decided to do an IEP and am really glad we did. His accommodations are minimal and mostly environmental - lights in the classroom need to be reduced, he needs to sit near a window and he has to have an LCD computer and an LCD tv - this year they finally bought one - so I no longer have to take mine in. If he is a little sick he has difficulty remembering things like homework - so she will check his agenda to make sure he wrote down what needs to be done, if his letters are backwards (writing deteriorates when fighting anything) he will not be penalized - he has lost marks in spelling tests in the past when clearly it was just his backwards letters. I feel a weight lifted as I know the other teachers he has have to read his IEP so I do not have to chase people down and explain everything. We are lucky that we have not other issues other than PANDAS - my son is social, does well in school and sports and enjoys school.

[brink]

Yes, the teacher did notice. When this all first started, she had no idea what was going on so she contacted me with her concerns. It was because of her astute awareness of my son's behavior that we sought professional help. We had no idea what was going on either! At the time, we didn't have any diagnosis, but I did tell only the teacher what the neurologist had said. Due to the privacy laws, she was not allowed to take it further than a confidence between the two of us, unless I specifically gave permission.

 

The reason I didn't involve the school was more of an interpersonal issue between the principal and myself. We have had many disagreements over the years (she was at the first school then got transferred to the other so we were stuck with her for 5 years). I knew that if she had known about the ADHD label, my son would have been treated differently (in a negative way because of how the principal felt about me), even though his case was not extreme enough. The nurse did know about the medication (Clonodine) he was on due to safety issues, but he never took it at school. There's a lot more involve with the principal issue, but too complicated to post here.

 

Keep in mind, too, that this all just started in March 2007. So there was only a few months of school left. The TS dx didn't come until August, and by then, we had already decided to homeschool (for various other reasons).

 

I am not against getting the school involved, but in our case, it could have been worse than better in the particular building/school he was in. I'm not saying that our district isn't overly accommodating to special needs kids because in fact, they are. It was just a case of us not wanting to get the system involved unless we had to. Had we sent him to school this year, we would have informed the staff of his Dx.

 

In many cases, you have to get the school involved, and in some, it's particularly advantageous because you can utilize the public programs that some of the schools have regarding Dx and special needs classes.

[amy1]

We learned that something was going on when my daughter was in 1st grade but she was diagnosed with allergies so we didn't say anything. Then in 2nd grade when she worsened over a week (suddenly!) her teacher called me and told me something wasn't right. Right before this year (3rd grade) we made an appt with our principal and sat down with her to explain the issues...i was very hesitant to use the word tourettes as you know how people react when they hear it...my daughter was mild at the time and i explained that we need her to be with a teacher with experience who is structured and caring...we got a fabulous teacher this year. I told the teacher that if her symptoms worsen and start becoming and issue in the class that i will come in and talk to the kids about TS/Tic Disorders, etc. Right now I am trying not to label her as i have told a few friends...some of them learn the news and then start staring at my daughter to look for the tics. I have had to tell some dance teachers that her tics may come and go---most of them comment that they have never had a child with TS and what does that mean, etc. Most of them assume she will be verbal and disruptive. That's such a hard stereotype to break. Knowledge is power and i believe that with other kids it's important to educate in a matter of fact way---i heard my daughter on the phone the other day. her friend was telling her that she learned she has to get glasses and she was nervous about what the classmates would say. I was so proud of my eight year old, i heard her say "it's okay, everyone is different. I have tics. we're all still special"

[airbucket]

hello everyone - still new here but just would like to comment on the school issues.

 

it is a peronal issue for each of us and i do not think anyone shoud judge another person for their choices. I found for us that getting the school 100% involved was the way to go. I will not be afraid to say Tourrette disorder to anyone. Much less those who are responsible for accomodating my child and seeing to it that he learns, be it dealing with TS, purple skin or 3 ears! They WILL provide for my son and they WILL not treat him poorly based on the lore of TS. Too bad. All children in this country are legally entitled to a free and appropriate public education with any supplemental services they may need to achieve appropriate ed. If my son's principal did not follow through on the IEP or did something to thwart my son's success because she does not like the idea of TS, i would go straight to the superindetent of schools. I do believe in using our public ed t its fullest. My son is now in a fully inclusive classroom with his peers and his accomodation and is doing fine, and the minute that anyone stops respecting his diffeences and stops upholding the legal document which is the IEP, they'll be hearing from me!

 

Good luck to all parents who have their special kids in public school, it can be a battle and a fight but if you stick to what you know is right, that which is the LAW that no one can argue with, you'll be on the right track!

 

On another note, I am taking my 8 yr old this evening for the Lab Corp UPPA "mercury" test, however i do not have a doctor who i am sure can interpret the results. My sons ped didnt know what the test was for and just agreed to it because i insisted he write a script for it. Not sure what to do....have others here done this test?

 

Also have you been given info as i was by a psychiatrst who specializes in TS, about how TS is so widely misunderstood? It is not at all simply tics - thats one manifestation. According to the materials i read, TS can be a complex disordr with not just phsyical tics but emotional and cognitive tics, i.e., not being able to let go of a topic or repeating one idea etc. Just exploring what other parents know, thanks!

[Chemar]

hi Airbucket

 

when I was new to the world of TS, a site that really helped me was Leslie Packer's Tourette Syndrome Plus as it has a lot of really good basic info on the spectrum of disorders that can make up TS, which yes, is a complex disorder that can have a number of associated issues. Not everyone who has TS has these "spectrum disorders" and many do just have motor and vocal tics, some very mild and never complex.

 

here is the site http://www.tourettesyndrome.net

 

 

I am assuming you have already visited the Latitudes/ACN section here for TS, which has a lot of great articles

http://www.latitudes.org/tics_tourettes.htm

 

and lastly, I think TS is so misunderstood primarily because so many are ignorant and uneducated on what it is.

One of the reasons my son wears his TS label openly as he strives to help clear the misinformation and stigma often associated with it

[amy1]

you make an excellent point---all of our children are so different as are our families, schools, etc. I agree with you totally. The public school inclusive classroom is where we at at this point in time as well and I am determined to stay involved. Who knows what tomorrow holds and we'll adjust as needed. I admire your determination and support!