Question:
My two Tourette Sydnrome children have both been clinically diagnosed
with TS by different specialists. We have Tourette Syndrome on both
sides of my family, and on my husbands side, there is OCD/ADHD.
Sometimes I think that my children inherited more than the usual share
of TS genes and that this has resulted in the manifestation of TS in
other ways besides purely 'neuropsychiatric'.
We have alot of medical situations like Sydenham's Chorea and
epilepsy in the family and a few other situations that make me wonder
if TS, in our case, is a 'symptom' of another neurological condition
and if this is the case is it still TS?
My oldest son has scoliosis, severe pes cavus, loose joints - his
shoulder dislocates often as well as other joints, and a problem with
the tibial band. There are other types of symptoms but I will stick to
the neuromuscular ones. He cannot run anymore and walking any distance
can be a problem. My youngest TS son is now beginning to have many of
the same problems and he wasn't born with them either. they developed
with the onset of the TS symptoms. Both boys have leg pains and
especially calf spasms. I also had childhood onset TS and I have the
same condition plus inflammatory lesions in the white matter of my
brain. The docs don't think it is MS or lupus although I did have a
positive ANA.
The pediatric orthopedic specialist mentioned Marie Charcot Tooth
for my TS son and suggested we see a geneticist which we haven't done
yet. Then the specialist who fitted my son's foot inserts mentioned
MCT to us without knowing what the orthopedic specialist had mentioned.
So now I am wondering if this indeed could be the case.
The orthopedic specialist mentioned to me that many of the TS kids
she sees have orthopedic problems. Now I am wondering if the label
'neuropsychiatric' has prevented TS specialists from asking questions
that pertain to other types of physical symptoms. It occurred to me
that parents may not offer this information about leg pain etc. because
they are asked questions that relate to 'mental function' not
necessarily 'physical symptoms'. Is something being missed here or are
there two separate conditions occurring together not related to one
another? I cannot find anything in the literature related Marie
Charcot Tooth to TS or TS to many other ailments besides dystonia at
this point. Does this mean that I should completely eliminate the
possibility that these two conditions (or maybe something else that
might be going on besides MCT) might be one condition?
Answer:
Only anecdotal, both my boys complain a lot about various leg pains, but we are
a relatively long-legged tall family, ... growing pains have not been out of
the question, as my boys have shot up as much as an inch a month. Calcium and
magnesium and potasium imbalances are also causes of various skeletal/muscular
pains. ....but an interesting point you raise as my boys complaints about
their legs far outnumber their complaints over having tics, or
obsessive/complulsive behaviors.
I see you found your way to ast via remarq.com. If you are not the DKW from the
MGH message board, please excuse my confusion. I've read and heard about a lot
of controversy there in the last few months, and it's not pretty.
I think (???) the TIC website mentions something to the effect that TS when
inherited bilaterally is not any more severe ? You might want to check it, as I
may not be recalling the information correctly.
The diagnostic criterion for TS state that if the tics are due to another
medical condition - and there are a number of other conditions which include
tics - than it is NOT TS. In your case, since you have mentioned Dr. Lowe on
another post, I'm assuming you are correctly diagnosed. The diagnostic
criterion are available from a number of sources, which I assume you've seen.
Most, if not all, of what you describe above is explained by MCT, and that's
with just a quick, layman's tour of the information available with an easy
internet search. I would think you would want to get this checked out sooner
rather than later. Have you seen a neurologist? (If I recall, Lowe is a
psychiatrist ???? )
I am confused with the implications here - according to my quickie internet
tour, MCT is not at all an uncommon condition. If physicians were seeing a high
incidence of MCT with TS, I would expect them to have checked it out, and would
expect to find at least one research article. Have you asked this question of
Dr. Lowe?
Now I'm very confused. You posted, in another post here, that your children get
on well with an excellent physician (Dr. Lowe). You're not sure what conditions
are really causing the symptoms in your family, but you haven't yet checked out
Marie Charcot Tooth. And yet, you post constantly to another TS message board
with claims that large amounts of fish oil or flax oil or snake oil - I can't
remember which, because I don't follow it - have cured your children of TS
symptoms. And now you appear uncertain if they even have TS, unaware of the
diagnostic criterion, and uncertain if they have MCT? Are you sure that these
"fatty acids" and oils, which are curing your family of TS symptoms, aren't
treating something entirely different in your case?
Yes they work for my
children's neurological symptoms but that is not issue I am addressing
here and I don't want to get sidetracked. My experiences on another
forum have nothing at all to do with my question here. Also, I have a
familiarity with certain specialists in a certain area which does not
imply that my children are under the present care of that individual
which has nothing at all to do with this question either? Let us not
carry a disagreement, that seems to be resolved, over here. I am also
trying to figure out why you (if you are blessedby2), who have
personally contacted me by e mail before and we had some positive
correspondence, are presently addressing these questions to me. You are
probably not aware of who I am.
But that is beside the point. The reason I think that specialists
do not make an association with the medical manifestations of TS is
primarily because of the perception of TS as a neuropsychiatric
disorder. I have also read several cases of autistic children whose
physicians never explored other medical causes of autism such as
Tuberous Sclerosis once there was an 'autistic disorder' diagnosis. I
think that the very name "psychiatric" attached to a condition makes it
less likely to be viewed as a medical disorder and so the medical
questions are never asked. Or perhaps, when there are physical
manifestations, TS specialists view them as two separate conditions.
If fatty acids work "for your children's neurological symptoms,"
that's VERY good news for their symptoms and for your family. But you
have presented these oils or acids as a cure for the symptoms of
Tourette Syndrome on a forum where you have been unwilling to back up
your claims, and where new posters may be unaware of the extent of
neurological conditions which you are actually treating. Here, you
are discussing many more conditions than Tourette syndrome, and here
many people read many of the other TS forums. There is some
contradiction, or at least confusion, in what you have presented there
and what you have presented here. If folks who participate in a forum
where one has no idea who is writing what want to believe and follow
those claims, that's their business over there, and that's fine.
Here, it's another story. It's a hot button for me because the TSA
irresponsibly has placed a very prominent link to that board, front
and center on their website, and any new person going in there is
bombarded with fatty acids, fish oil, flax oil and snake oil; and one
person - Bonnie - asking others to please be more responsible about
the claims they post.
