Re: /Gareth Update

[Guest guest]

Oh, Margaret! It never seems to end! I remember when my oldest used to have

febrile seizures..and although I worked on the ambulance-I was totally useless

then they would occur. Fortunately, so far Tori is seizure free.

I can't remember-is this typical of our ddx kids?

There is a student in the school I work at-beautiful girl..well, she has a

seizure disorder, and this year was the worst yet for her. She seized 2x in the

pool, 1x in gym, and in the foyer just after a solo performance. The last 2

times, she went down (hard & heavy) right on her face.

Liz

/Gareth Update

Hi, Everyone..........Gareth has had both T & A removed and still

had/has severe sleep apnea. He uses the C-PAP machine nightly. Best of luck to

you and your son.

Update.......we just got back from the ER. Gareth had his second 'major'

seizure today at school and scared the heck out of everyone. It lasted longer

than 5 minutes and by the time I got there, they were debating to call 911.

I took him to the ER, everything came back normal, and we got sent home. The

doctor switched him back to the Depakote instead of the Topamax, so now we

will have to deal with the weight gain some how. He's scheduled for his

pilonidal surgery July 15th. They will send him home with a 'marsupial wound'

instead of doing the more involved 'flap' . I have flashbacks of his surgery

(while in Chicago) and being sent home with a marsupial......it's not going to

be an enjoyable summer for him or I having to change the dressings and

repack.

Take care, Everyone.

Margaret

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[Guest guest]

Yes, kids with autism often do not get treated correctly for

seizures. has had them and yet the test says no.However I video

taped him having a seizure so the Dr. could see him having one. I

also video taped him having sleep apnea so they could see this. You

have to stay one step ahead of the Docs. Cyndi B

>

> Oh, Margaret! It never seems to end! I remember when my oldest

used to have febrile seizures..and although I worked on the ambulance-

I was totally useless then they would occur. Fortunately, so far

Tori is seizure free.

>

> I can't remember-is this typical of our ddx kids?

>

> There is a student in the school I work at-beautiful girl..well,

she has a seizure disorder, and this year was the worst yet for her.

She seized 2x in the pool, 1x in gym, and in the foyer just after a

solo performance. The last 2 times, she went down (hard & heavy)

right on her face.

>

> Liz

> /Gareth Update

>

>

> Hi, Everyone..........Gareth has had both T & A removed and

still

> had/has severe sleep apnea. He uses the C-PAP machine nightly.

Best of luck to

> you and your son.

>

> Update.......we just got back from the ER. Gareth had his

second 'major'

> seizure today at school and scared the heck out of everyone. It

lasted longer

> than 5 minutes and by the time I got there, they were debating to

call 911.

> I took him to the ER, everything came back normal, and we got

sent home. The

> doctor switched him back to the Depakote instead of the Topamax,

so now we

> will have to deal with the weight gain some how. He's scheduled

for his

> pilonidal surgery July 15th. They will send him home with

a 'marsupial wound'

> instead of doing the more involved 'flap' . I have flashbacks of

his surgery

> (while in Chicago) and being sent home with a marsupial......it's

not going to

> be an enjoyable summer for him or I having to change the

dressings and

> repack.

>

> Take care, Everyone.

> Margaret

>

> **************Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars. (http://autos.aol.com/used?

ncid=aolaut00050000000007)

>

>

[Guest guest]

My son also has seizures. My doctor actually said it was probably just strange

behavior due to his ds.We finally found a good neurologist after so many

horrible seizures.Terry /Gareth Update> > > > > > Hi,

Everyone..........Gareth has had both T & A > removed and > still > >

had/has severe sleep apnea. He uses the C-PAP machine > nightly. > Best of luck

to > > you and your son.> > > > Update.......we just got back from the ER.

Gareth had his > second 'major' > > seizure today at school and scared the

heck out of everyone. > It > lasted longer > > than 5 minutes and by the time

I got there, they were > debating to > call 911. > > I took him to the ER,

everything came back normal, and we > got > sent home. The > > doctor switched

him back to the Depakote instead of the > Topamax, > so now we > > will have

to deal with the weight gain some how. He's > scheduled > for his > >

pilonidal surgery July 15th. They will send him home with > a 'marsupial wound'

> > instead of doing the more involved 'flap' . I have > flashbacks of > his

surgery > > (while in Chicago) and being sent home with a >

marsupial......it's > not going to > > be an enjoyable summer for him or I

having to change the > dressings and > > repack. > > > > Take care,

Everyone.> > Margaret> > > > **************Gas prices getting you down?

Search AOL Autos > for > > fuel-efficient used cars.

(http://autos.aol.com/used?> ncid=aolaut00050000000007)> > > > [Non-text

portions of this message have been removed]> > > > > > > > > > > > [Non-text

portions of this message have been removed]> >> > >

[Guest guest]

GOOD LORD Margaret!!!!!!!

HUGS,

D

In a message dated 5/6/2009 2:19:01 P.M. Eastern Daylight Time,

mfroof@... writes:

The doc told me she has to check with her boss

as to the next course of action - either continual, prophylactic

antibiotics and/or IV Ig treatments once a month.

**************Remember Mom this Mother's Day! Find a florist near you now.

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[Guest guest]

OMG, Margaret & Leah. Does it ever end????

I am sure Tori would be dxd Asperger's as well if it weren't for the DS. She is

quite hi-functioning compared to most but does have certain ASD tendencies that

interfere with her daily life.

Liz

[Guest guest]

Margaret,

has a primary immune deficiency involving IgM and IgG subclass 4. He will

have prophylactic antibiotics in the fall and winter; he does better in warmer

months. He has had IVIG when his overall IgG was low and he was on leukemia

treatment, so if Gareth needs that and you want more info, just let me know.

Beth

/Gareth update

<<I know it's not possible to have DS and Asperger's, but I think that if

Isaiah didn't have

DS, he'd have the Asperger's diagnosis.>>

Hi, Everyone..........I have said this before about Gareth. If it

wasn't for the DS, he'd be Asperger. In fact, I was told when he was in

elementary school, if it wasn't for the autism, he wouldn't be able to have

the MR label. Go figure!!!

As for Mr G...........we get to add more initials behind his list!!! He

now has been dx'd with MBL - Mannose-binding Lectin deficiency. This will

explain his frequent ear infections, severe pneumonia's, cellulitis, etc.

It has to do with the Complement system (plasma proteins) of the body for

fighting diseases/infections. The doc told me she has to check with her boss

as to the next course of action - either continual, prophylactic

antibiotics and/or IV Ig treatments once a month.

Take care, Everyone.

Margaret

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