Question:
I thought I'd let you all know about a positive outcome. A few months
ago I mentioned that I was looking for a sleep doctor who knows about
ADD, Tourette Syndrome and other neurobiological disorders in children
and teenagers... well, I found one in my own backyard! One of my
children has Tourette Syndrome (with ADD and OCD, TS+ as we call it) and
I'm active in the Tourette community. Most of the kids/families who are
associated with our chapter of Tourette Syndrome Association (TSA) have
problems with sleep. They are awake and alert at night and can't get up
in the morning. They're zombies in school, both because of lack of
sleep and the medications they are on. Soon after I was diagnosed with
sleep apnea last March, I was telling a friend in our chapter of TSA
about it. She was having severe problems with her teenage son's
behavior. When I described my symptoms and suggested she read Dr
Dement's book, she realized that her son has all the symptoms of sleep
apnea, too. She searched for a sleep doctor who could evaluate her son,
someone who understands the complications his disorders would present in
evaluation and treatment. She found a certified sleep doctor at SUNY
Stony Brook who met the criteria. Her son was evaluated in the sleep
lab and he was just diagnosed with sleep apnea! The doctor (Dr
Maczaj... I'm not sure i have the spelling right) said that CPAP
wouldn't improve his tics (the least disturbing symptoms of TS+), but it
would likely improve his irritability and zoning out, would improve his
school performance and reduce his need for medication. He's going for
the titration study soon, then he'll get a CPAP. I talked with his
mother about the need for support and information while her son gets
used to CPAP- VERY important for an impulsive kid (they thought he'd put
it on and in one night, zip everything will be better). So now, we're
on the verge of something that may possibly be able to help a lot of
kids in the TS/ADD/ADHD population. Even though it is difficult for
many of these kids to adjust to new situations- many of them will be
hypersensitive to the feel of the CPAP, obsessive about it fitting just
right, and impulsive about ripping it off when it doesn't feel just
right, I think that if we work with them in helping them get used to it
we're going to have a great new treatment for a lot of kids in the
population of kids I work with. My friend has asked Dr Maczaj if she
will give a presentation on sleep apnea at our TSA chapter meeting and
she agreed. I would LOVE to put her in touch with the TS researchers
and maybe they can collaborate on studying sleep disorders in kids with
TS, ADD, ADHD, OCD, etc. I'm so excited about this!
Answer:
compliments on your tenacity on this. Your search is now
snowballing and will help a lot of other people as a result. Many of us
here have read of the link between many kids with ADD and sleep apnea,
but it seems most of the doctors are the last to know. This doctor you
found seems like a gem! Take good care of her.
I know a couple of people with kids on CPAP and the kids took to it
right away! They thought the Darth Vader look was cool and are the envy
of some of their friends.
Tourette's is a common but very
mis-understood ailment. A couple of semesters ago, I had a student with
Tourette's. I noticed in class that he had tics and appeared to be
fighting to not make involuntary noises. I took him aside after class
and asked if he had Tourette's and the answer was yes. We talked about
it and then I took him to our Centre for students with special needs,
and they introduced him to a number of students with the same problem.
This helped him feel a lot better as he thought he was the only one.
School poplulation is over 5,000 just for day school students.
He had an assignment to do, and even though the class was on computer
hardware, I suggested he do his assignment/presentation on how to use
the internet as a source of information for his Tourette's. He learned
more about using the internet, more about his condition, gained a lot of
self confidence, and educated the rest of the class as well. Almost
immediately, the class warmed up to him and some started hanging out
with him and a couple of the girls practically adopted him and
mother-hened him!
As a result of this, he seemed a lot less stressed and his tics also
reduced in class.
I think that knowledge and compassion in regards to many conditions are
just as important as the medical treatments as well.
It's not my son with TS who has sleep apnea, it's my friend's son. My
son is, thank god, doing well, Tourette and all. He just started his
freshman year at Brown University where there are a lot of quirky kids,
so he doesn't feel different from everybody like he did in high school.
He loves it there, is probably happier than he's ever been in his
life... and he's mentoring a local elementary school boy with ADHD
through a program at Brown where college students with disabilities
mentor kids with disabilities. If you'll forgive me for boasting, but
I'm so proud of him- Andy is helping a little boy not to go through the
horrors that he himself had to go through in elementary school.
Amen! kids with TS need more understanding, caring people like you.
My son had a similar experience when we showed a video on TS to his 4th
grade class. All the kids needed was to become educated about TS; no
kid who saw the video ever picked on him again... wish I could say the
same about the teachers :( One of the reasons I get so outraged about
psychiatrists over-prescribing medication is because of what they
typically do to kids with TS. The TS experts/researchers don't medicate
for tics unless they are severe enough to interfere with the child's
functioning- usually it's the associated disorders that many kids with
TS have that cause the problems (like ADHD, OCD, anxiety and now we
know, sleep disorders). But the typical psychiatrist, non-expert in the
field, whom most kids are initially referred to automatically prescribe
a neuroleptic, such as Risperdal or Haldol to control the tics. It's
really sad. What we need is more compassion and education, just like
you provided for your student. BTW, Canada has a wonderful Tourette
Syndrome Association (www.tourette.ca)- I've met some of the nicest
people from the Winnipeg chapter at conferences. One of the foremost
Tourette doctors- Roger Freeman is in Canada. Oops, sorry to go so far OT.
