Re: Severe tics/movements? PANDAS

[Guest guest]

Thanks, Cindy,Dawn and Loriann for your feedback. It started

abruptly this last November, but looking back, I think he's had

spells of blinking and even stretching his neck. So, it makes sense

that it is tics, it is just so severe right now. He has never had

STREP, but has been on antibiotics many times for ear infections,

sinus infections, etc. He had his tonsils out in November due to

sleep obstruction. His brother, Seth, also has tics which have

varied from mild to severe at times, so I guess that it what it is.

It just worries us that we're missing something - as if MITO isn't

horrible enough for these kids to deal with. I have an email in to

the neurologist, we'll probably try Haldol next. That worries me due

to the side effects. Any experience with that drug on this list?

Seth tried it for a time and it caused stiffness and him to not feel

good so we quit. The neurologist tells us Tenex wouldn't be strong

enough for these tics. He had wanted to avoid the Haldol type

drugs. Thanks so much, apparently tics aren't that common in mito

(according to the mito doc) but I knew some people had spoken of tics

and tourettes on here. They don't diagnose Tourettes until after 1

year and this spell has been about 5 months. This is mild compared

to what our friend Suhad and others are experiencing, but is so

devastating socially for these kids..

Cindy

> It would be PANDAS if it is a sudden onset. It is

> caused by strep infections and by either removing

> tonsils or treating with antibiotics it can be

> reduced. I speak from experience here also. My twin

> who has tics depending on medications ( I

> wrote how Tenex took care of them.) had had strep

> repeatedly but his was not a sudden onset. However

> his twin developed OCD- obsessive compulsive

> disorder with sudden onset and had dramatic

> improvements with tonsil removal. is allergic to

> just about every antibiotic so we were unable to try

> getting rid of it without drastic measures. I forgot

> about that until I see Cindy mentioned it.

> HTH,

> Loriann

>

[Guest guest]

Won't the neurologist let you try Tenex? I would much

prefer to try it rather than the Haldol. It was

amazing how drastic 's tics were and how the

tenex was the answer. Maybe if you can reduce them it

would be better than dealing with the side effects of

haldol. Just a thought.

Loriann

--- Cindy wrote:

>

>

> Thanks, Cindy,Dawn and Loriann for your feedback.

> It started

> abruptly this last November, but looking back, I

> think he's had

> spells of blinking and even stretching his neck.

> So, it makes sense

> that it is tics, it is just so severe right now. He

> has never had

> STREP, but has been on antibiotics many times for

> ear infections,

> sinus infections, etc. He had his tonsils out in

> November due to

> sleep obstruction. His brother, Seth, also has tics

> which have

> varied from mild to severe at times, so I guess that

> it what it is.

> It just worries us that we're missing something - as

> if MITO isn't

> horrible enough for these kids to deal with. I have

> an email in to

> the neurologist, we'll probably try Haldol next.

> That worries me due

> to the side effects. Any experience with that drug

> on this list?

> Seth tried it for a time and it caused stiffness and

> him to not feel

> good so we quit. The neurologist tells us Tenex

> wouldn't be strong

> enough for these tics. He had wanted to avoid the

> Haldol type

> drugs. Thanks so much, apparently tics aren't that

> common in mito

> (according to the mito doc) but I knew some people

> had spoken of tics

> and tourettes on here. They don't diagnose

> Tourettes until after 1

> year and this spell has been about 5 months. This

> is mild compared

> to what our friend Suhad and others are

> experiencing, but is so

> devastating socially for these kids..

>

> Cindy

>

>

> > It would be PANDAS if it is a sudden onset. It is

> > caused by strep infections and by either removing

> > tonsils or treating with antibiotics it can be

> > reduced. I speak from experience here also. My

> twin

> > who has tics depending on medications ( I

> > wrote how Tenex took care of them.) had had strep

> > repeatedly but his was not a sudden onset.

> However

> > his twin developed OCD- obsessive compulsive

> > disorder with sudden onset and had dramatic

> > improvements with tonsil removal. is

> allergic to

> > just about every antibiotic so we were unable to

> try

> > getting rid of it without drastic measures. I

> forgot

> > about that until I see Cindy mentioned it.

> > HTH,

> > Loriann

> >

>

>

>

>

>

>

[Guest guest]

Well, you bring up good points. My older son has been on Tenex for

rages and it hasn't helped his tics. But, who's to say you couldn't

try. Hmmm..

Cindy

> >

> >

> > Thanks, Cindy,Dawn and Loriann for your feedback.

> > It started

> > abruptly this last November, but looking back, I

> > think he's had

> > spells of blinking and even stretching his neck.

> > So, it makes sense

> > that it is tics, it is just so severe right now. He

> > has never had

> > STREP, but has been on antibiotics many times for

> > ear infections,

> > sinus infections, etc. He had his tonsils out in

> > November due to

> > sleep obstruction. His brother, Seth, also has tics

> > which have

> > varied from mild to severe at times, so I guess that

> > it what it is.

> > It just worries us that we're missing something - as

> > if MITO isn't

> > horrible enough for these kids to deal with. I have

> > an email in to

> > the neurologist, we'll probably try Haldol next.

> > That worries me due

> > to the side effects. Any experience with that drug

> > on this list?

> > Seth tried it for a time and it caused stiffness and

> > him to not feel

> > good so we quit. The neurologist tells us Tenex

> > wouldn't be strong

> > enough for these tics. He had wanted to avoid the

> > Haldol type

> > drugs. Thanks so much, apparently tics aren't that

> > common in mito

> > (according to the mito doc) but I knew some people

> > had spoken of tics

> > and tourettes on here. They don't diagnose

> > Tourettes until after 1

> > year and this spell has been about 5 months. This

> > is mild compared

> > to what our friend Suhad and others are

> > experiencing, but is so

> > devastating socially for these kids..

> >

> > Cindy

>

[Guest guest]

Our jenny was on Haldol for a while. It caused massive weight gain, sluggishness and I was told that it was not mito friendly.

Re: Severe tics/movements? PANDAS

Well, you bring up good points. My older son has been on Tenex for rages and it hasn't helped his tics. But, who's to say you couldn't try. Hmmm..Cindy> > > > > > Thanks, Cindy,Dawn and Loriann for your feedback. > > It started > > abruptly this last November, but looking back, I> > think he's had > > spells of blinking and even stretching his neck. > > So, it makes sense > > that it is tics, it is just so severe right now. He> > has never had > > STREP, but has been on antibiotics many times for> > ear infections, > > sinus infections, etc. He had his tonsils out in > > November due to > > sleep obstruction. His brother, Seth, also has tics> > which have > > varied from mild to severe at times, so I guess that> > it what it is. > > It just worries us that we're missing something - as> > if MITO isn't > > horrible enough for these kids to deal with. I have> > an email in to > > the neurologist, we'll probably try Haldol next. > > That worries me due > > to the side effects. Any experience with that drug> > on this list? > > Seth tried it for a time and it caused stiffness and> > him to not feel > > good so we quit. The neurologist tells us Tenex> > wouldn't be strong > > enough for these tics. He had wanted to avoid the> > Haldol type > > drugs. Thanks so much, apparently tics aren't that> > common in mito > > (according to the mito doc) but I knew some people> > had spoken of tics > > and tourettes on here. They don't diagnose> > Tourettes until after 1 > > year and this spell has been about 5 months. This> > is mild compared > > to what our friend Suhad and others are> > experiencing, but is so > > devastating socially for these kids..> > > > Cindy>Please contact mito-owner with any problems or questions.