Re: Severe tics/movements?

[Guest guest]

Cindy,

One of my twins who is not diagnosed with mito

developed tics. He is on Tenex to help with his ADHD.

This medication is what they use on those with

Tourettes. We attempted to change him to Strattera

last year and that even caused tics for him. He went

back to Tenex and at least we don't have the tics any

more. He would have blinking episodes when younger,

throw his head repeatedly to one side and throw his

arms out almost snapping his elbows. It is a definite

improvement and helps with the concentration. HTH,

Loriann-mom to and 12.5 yr old twins and

Lucas 9 yrs old with mito, FOD(LCHAD), J-J tube fed,

G-tube vented, febrile seizures, ataxia, hypothyroid

due to pituitary malfunction, global developmental

delay, etc.

--- Cindy wrote:

>

>

> Dear Mito Families: Please know I am praying for so

> many going

> through difficult times. Please share your

> experiences with us

> regarding tics, abnormal eye/body movements. Our,

> Ben (9 on the 28th

> and has mito) has been suffering for 4 months now

> with what has been

> diagnosed as severe tics. His eyes flip up to the

> side rapidly (he

> has seizures, too, but these are not seizure

> activity, according to

> the EEG which was conducted while these were

> occurring). They may do

> this 30 times a minute, sometimes more sometimes

> less. Then he added

> facial and neck movements, then shoulder and back

> jerks, then now has

> added a grunting/clearing throat noise. He has had

> an MRI (although

> only large masses could be ruled out due to movement

> and blurriness

> of the MRI). We have tried Keppra and then

> Tetrabenazine, all

> without assistance. The movements tend to wax and

> wane (like tics

> do) but are so extremely severe today. Please share

> your experiences

> with tics and/or anything else that the docs could

> be missing. My

> little boy seems to be taken over by these dog-gone

> movements and it

> is heart breaking. Cindy Cruz (mom to Seth and Ben,

> both mito)

>

>

>

>

>

>

[Guest guest]

PANDAS- do a google search- this is what caused ours.

Cindy-GA

Dear Mito Families: Please know I am praying for so many going through difficult times. Please share your experiences with us regarding tics, abnormal eye/body movements. Our, Ben (9 on the 28th and has mito) has been suffering for 4 months now with what has been diagnosed as severe tics.

[Guest guest]

Do they think it could be tourrettes? Have they ruled that out?

Dawn

[Guest guest]

My daughter had all the same things going on when she was little and on up in age. She still deals with it especially when she is tired it gets much worse. A doctor told me it was Tourettes based just on what I said. So still today I dont know if it is Tourettes or Mito related stuff but I do know when was on the Mito cocktail it was better.

Blessings,

Re: Severe tics/movements?

Do they think it could be tourrettes? Have they ruled that out? DawnPlease contact mito-owner with any problems or questions.

[Guest guest]

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

--- Cj Dir wrote:

> PANDAS- do a google search- this is what caused

> ours.

> Cindy-GA

> Dear Mito Families: Please know I am praying for

> so many going

> through difficult times. Please share your

> experiences with us

> regarding tics, abnormal eye/body movements. Our,

> Ben (9 on the 28th

> and has mito) has been suffering for 4 months now

> with what has been

> diagnosed as severe tics.

[Guest guest]

Cindy,

The eye movements sound similar to what I see in my daughter. One of the main symptoms of her condition is motor apraxia/dyspraxia (the absence or loss of purposeful motor movement). Her eyes will roll up and seem to get stuck for a moment. This may happen only a few times, or may go on for awhile. She also has epilepsy, but I know these are not seizures. I do see this get worse after she has had a seizure, and it does not go on all the time. Her body movements also seem jerky and twitchy because her apraxia is so severe. On top of this she has other movement disorders. Her odd movements are always worse after seizures, during stress/illness, and when she is over tired/over stimmed.

HTH

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

[Guest guest]

Thanks, e! Very interesting about the apraxia. My Seth has

unknown movement disorders, too. Darn nito seems to affect

everything. Thanks

Cindy

> Cindy,

> The eye movements sound similar to what I see in my daughter. One

of the

> main symptoms of her condition is motor apraxia/dyspraxia (the

absence or loss

> of purposeful motor movement). Her eyes will roll up and seem to

get stuck for

> a moment. This may happen only a few times, or may go on for

awhile. She

> also has epilepsy, but I know these are not seizures. I do see this

get worse

> after she has had a seizure, and it does not go on all the time.

Her body

> movements also seem jerky and twitchy because her apraxia is so

severe. On top of

> this she has other movement disorders. Her odd movements are always

worse

> after seizures, during stress/illness, and when she is over

tired/over stimmed.

> HTH

>

> e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific

mito)