View Full Version : Newly diagnosed 9yr old with Tourettes Syndrome (TS)


krisdevan311
09-06-04, 07:51 PM
My son was rediagnosed with Tourettes July 29th fron his original diagnosis of ADHD when he was six. I noticed "things" when he was a toddler. I can't explain it, but he was different from the other toddlers he was in preschool with. When kindergarten came he was SO excited. Until his second day of school. I got a call from his teacher every day for the first two weeks of school... he won't sit still, he picks his nose, he drinks the glue, etc. Then he was moved to a different class. A combination K/1st grade class. The teacher just happened to be an ESE teacher teaching a non ESE class. Talk about an angel on earth... I can't repay her enough for all of the support she has given our family the last 4 years. We took him to a counselor for an ADHD evaluation. During our visit she asked Devan questions he couldn't possibly know the answers to. I actually thought she was talking to me. When I tried to answer she just replied, "Mom, these questions are for Devan, I need you to keep your head still." She proceeded to send him to the waiting room -- by the front door -- by himself. When he came and said he needed to use the restroom she replied, "it's out there. It says Men on the door." I had to remind her he couldn't read.:rolleyes: She said he was a normal five year old boy with over exagerated behavioral problems due to anxiety. I was extremely displeased with her. Not because she didn't tell us what we were looking for, but because of the whole ordeal. We ended up going back to the behavioral specialist he saw when he was four. He suggested we do an ADHD evaluation, consisting of packets for us and his teacher to complete. The results suggested he was ADHD, possibly due to organic brain damage. We were referred to a neurologist who stated he would not work him up for brain damage because he would treat him the same. ADHD is ADHD. Wrote a script for Ritalin and that was it, until we went back questioning him about the tics. "So, he has Tourettes. Has he come to you and said it's a problem? Until he does I won't treat him." Never mind the ridicule at school by other kids, etc. We continued to see his counselor/behavioral specialist. We discussed the tics, etc. He ended up diagnosing Devan with ADHD, Tourettes, and OCD. After three years of gradually worsening and also seeing a psychiatrist in conjuction with him, he referred us to Shands for a re-evaluation. After a long visit the pediatric neurologist rediagnosed Devan with Tourettes. 100% Tourettes (with some symptoms of ADD & OCD.) We are now awaiting on an appointment to see a different specialist at Shands who sees almost all Tourettes patients. We still have a LONG road ahead, including battles with the school. We can only take it one day at a time, though.

charlie
09-06-04, 08:13 PM
Krista,
Sounds like some pretty trying experiences with professionals till you found the right specialist. How did you manage to hold your temper with the Dr that told you to keep your head still?

How will this diagnosis affect schooling?

I'm real interested in this subject due to my 10 year-old showing increasing tics. I keep wondering if I should wait until he himself gets uncomfortable (gets teased at school) or just bite the bullet and see a professional.

How do you talk a child into taking meds when he's perfectly happy with his tics?

krisdevan311
09-06-04, 09:21 PM
Schooling... yeah, that's a hard one. Referral after referral for behavior at school. Minor things... spitting, picking in general. And a few more significant things. Particularly over the summer at the summer camp held at his school, which is a public school. He was kicked out of the extended day enrichment program (before school, after school, and summer camp) for biting. Three days in a row. 4 incidents. 3 of the 4 were in retaliation. Now, because of the class being taught during the after school program, Devan can't take karate 45 minutes a week, which was really helping with the self control/self discipline. But, Devan is a VERY sweet, emotional little boy with the biggest heart in the world. He gets mad if we kill a roach or a spider. Anyway.. getting off subject there. Sorry. Devan is in ESE (for learning disabilities) and occupational therapy at school. He has a lot of trouble with his writing and gets so distracted. It's very difficult. Homework is the WORST. But being in ESE gives him allowances/accomodations for some of his problems.

Devan started off being treated for ADHD, so meds were never an issue. We just explained to him that it would help him to concentrate a little better. And it has. It's now the tic issues, which can worsen with the stimulants. His meds haven't been changed yet, as we are waiting for an appointment with the Tourettes specialist.

charlie
09-06-04, 10:20 PM
Krista,
Best of luck to you in getting the help you need for young Devan.
Do they have coaches/counselors for 9 year olds with ADHD? I'm sure he's very frustrated when he resorts to biting and could benefit from someone to help walk him thru some other means of expressing whatever emotion is building up to the biting. (just thinking out loud here)
Shands sounds like the perfect place for a thorough diagnosis.
How are you all doing with Frances?

Piupau
09-06-04, 10:34 PM
Yes, Ritalin or Concerta can make tics worse! There are alternative meds if your boy has ts and adhd, but you should check the side effects before you decide what meds to say yes to. Also, are you sure his add symptoms aren't coming from trying to stop or hide tics? I have ts+adhd myself and I remember when I was 9 yo. I realized I wasn't like everyone else and got really depressed. I tried to stop tics in class because my teacher got mad every time I made sounds or did something "stupid", and because I was stopping tics I couldn't hear what she said or anything.

Homework... try making the homework "smaller". Tell him to put a blank paper over the things he's not supposed to read now, so that he only sees what he's supposed to do NOW. It might help him. My brain doesn't work if it looks like I have too much work to do... My brain does a complete system shutdown.

krisdevan311
09-07-04, 05:29 PM
Unfortunately, there are NO special people/programs around here during the summer.

krisdevan311
09-07-04, 05:31 PM
Yes, Ritalin or Concerta can make tics worse! There are alternative meds if your boy has ts and adhd, but you should check the side effects before you decide what meds to say yes to. Also, are you sure his add symptoms aren't coming from trying to stop or hide tics? I have ts+adhd myself and I remember when I was 9 yo. I realized I wasn't like everyone else and got really depressed. I tried to stop tics in class because my teacher got mad every time I made sounds or did something "stupid", and because I was stopping tics I couldn't hear what she said or anything.

Homework... try making the homework "smaller". Tell him to put a blank paper over the things he's not supposed to read now, so that he only sees what he's supposed to do NOW. It might help him. My brain doesn't work if it looks like I have too much work to do... My brain does a complete system shutdown.
Good question about the ADD symptoms vs. trying to suppress tics. That's something to seriously think about.

GREAT idea with the homework. We'll give that a try tomorrow when he comes home with homework.:) Thanks.

Piupau
09-07-04, 08:58 PM
Krista, tell us if it works :) Another thing to think about, try making small goals, If he's supposed to read a book (impossible??) Make him read a few pages at a time and then let him do something else to relaxe. I have a very hard time reading and read like a 8-9 yo. Pretty slow for my age in other words, and I'm easily distracted. When I'm supposed to read a paper or book I use a blank paper to cover the text I've not read yet. Otherwise I'd read the same page 3-4 times without noticing it while thinking about soemthing else.

Also I get very tired of mental efforts, I got my ts and adhd dx as an adult, I almost fell asleep during some tests. If your son tells you he gets tired when he's reading, don't see that as an excuse to get away because it might be like for me - I fall asleep reading! Make smaller goals instead. :)

Energizer_Bunny
09-11-04, 10:15 AM
Hi Kris and welcome to forums and we are glad you are here.

I was reading some of your story and I felt compassion for you in getting your child diagnosed. I was diagnosed as an adult and going through my diagnosis was an ordeal, so you are not alone here.

Check and see if there is a local TS support group in your area. I go to one myself and you can see other kids with TS as well as your child can see other kids with TS and can relate and know that there are others out there like him. I had never seen another TS person in my life until I went to one of the support groups. I walked in and it took all I had not to cry and thought wow, I am part of this now.

Also, for school, see about getting him on a 504 or IEP plan for school since this seems to be interferring with school. I am not knowledgeable in this area since I have no chilren but a TS or ADHD support group if available in your area should be able to help you as well as the section in forums on Education and Learning.

http://www.addforums.com/forums/forumdisplay.php?f=45