New Member

Posted May 9, 2000 · May 9, 2000

:

My daughter has seizures but she had brain abnormalities. She was on the same

medication as Landon but it did not help her. Different meds work on different

kids. When Ally has a fever her seizures are much more frequent than normally.

There is a new family on the list with a newborn named Lea and they are also

from Alabama!!!! Maybe you could get together with them.

Robin mom to Ally 20 mths CHARGE

Posted May 9, 2000 · May 9, 2000

In a message dated 5/9/00 9:01:52 AM US Eastern Standard Time,

nasans351@... writes:

<< My question is this-do seizures go along with CHARGE? >>

Dear ,

I can't answer for everyone, but my son Tryny (who is 6 years old now) has

seizures (and every kind there is). He has grand mal, petite mal, convulsive

and febrile seizures. Tryny started having them at about 7 months old. We

have been through 3 different medications in the past and he is now on

Depakene, Dilantin and Topamax. His grand mal seizures have decreased lately

which is a blessing, but the febrile seizures are hard to control (due to

Tryny also having Shapiro Syndrome). Tryny's temperature can shoot to 105.2

with no given notice (and can drop to 94.4 just as fast). And I indeed know

how scary they can be. Have your neurologist check the corpus colasum on the

next MRI. Tryny's is very thin (at first they thought it was none existent).

I'm not sure if that has anything to do with the seizures or not, but it

never hurts to know everything about the brain. My other son Zak (who is 8

months old) seems to have some seizure-like activity at times, but we know

that his brain is abnormal so we expected that. (Oh, and by the way since

you are new to the list and don't know many of us yet, both of my CHARGErs

are adopted so there is no biological connection between them). If I can

ever be of any help in how to deal with the seizures or just to have a

shoulder to lean on, don't hesitate to write. Everyone on this list is

fantastic and has helped me so much, I welcome the chance to give something

back. Email me through the list or privately anytime. I may not get back to

you the same day as I sometimes can't get to my computer everyday (Zak is

still in the hospital, Tryny is in and out of the hospital all the time and I

have

a bunch of other children (7 children total and 3 grandbabies), but I love my

communication with my family on the list, it helps to know there are so many

people who care.

Debra

Posted May 9, 2000 · May 9, 2000

,

Thanks, not so sure about the wisdom but my " experience " is sure getting

greater. With " 2 " of them, if one isn't throwing something at me the other

one is. Zak is still in the hospital but I'm hoping to have him home by June

(or everyone around the globe will hear me when I let the doc's have it). He

had his nissen surgery done (the hospital in kansas said they had done one,

but we have found out different). And Tryny has surgery on his nose tomorrow

to find the source of a mysterious infection he has had for 14 weeks now.

Tryny has been in and out of the hospital 3 times as an inpatient in the last

2 months, and in the ER 9 times for everything from seizures to a mysterious

rash on his arms and legs, that comes and goes, but when it comes it's bad.

He has several scars from it so far (just what Tryny needs, more scars...)

As for Zak, they have taken him off the vent today and put him on c-pap.

Hopefully they can have him back on the trach collar by the time he comes

home. But he is growing so big, he now weighs 14 pounds and 9 ounces (and he

is now 8 months old). He plays with his hands, toys and of course all the

tubes coming out of him. He smiles and has this " airy " laugh. He is such a

cutie.

I hope to have more time now to keep up on the list and respond. Hopefully

things will start going more smoothly here.

Debra

Posted May 9, 2000 · May 9, 2000

Debra:

Just wanted to say it's nice to see you back on the list sharing your wisdom & experience with everyone. I've been missing hearing from you. I hope all is doing well for "the boyz"... I can't wait til Indy to see them next year!Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Posted May 10, 2000 · May 10, 2000

Debra,

I just shake my head in amazement everytime you tell us how things are going...I don't know how you do it girl!

I hope you get Zaky home for June, it'll be nice to be home in the summer. Give them both a big hug from me...

Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Re: new member

,Thanks, not so sure about the wisdom but my "experience" is sure getting greater. With "2" of them, if one isn't throwing something at me the other one is. Zak is still in the hospital but I'm hoping to have him home by June (or everyone around the globe will hear me when I let the doc's have it). He had his nissen surgery done (the hospital in kansas said they had done one, but we have found out different). And Tryny has surgery on his nose tomorrow to find the source of a mysterious infection he has had for 14 weeks now. Tryny has been in and out of the hospital 3 times as an inpatient in the last 2 months, and in the ER 9 times for everything from seizures to a mysterious rash on his arms and legs, that comes and goes, but when it comes it's bad. He has several scars from it so far (just what Tryny needs, more scars...)As for Zak, they have taken him off the vent today and put him on c-pap. Hopefully they can have him back on the trach collar by the time he comes home. But he is growing so big, he now weighs 14 pounds and 9 ounces (and he is now 8 months old). He plays with his hands, toys and of course all the tubes coming out of him. He smiles and has this "airy" laugh. He is such a cutie. I hope to have more time now to keep up on the list and respond. Hopefully things will start going more smoothly here.Debra

For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

Posted May 11, 2000 · May 11, 2000

Debra,

welcome to the Charge family. Hope your little one comes home soon.

Good luck

Angie Mother to 7yrs, 5yrs, 3yrs and - 2yrs old

Charger

wife to

Ontario, Canada

Posted May 12, 2000 · May 12, 2000

Hi All,

I just wanted everyone to know that yesterday we brought ZAK home !!!!!!!!!

It is sooooooooo great to see him laying in " his own bed - in his own home " .

This is the best Mother's Day present I can get. " ALL " my children home.

I haven't been able to get respite care for 11pm to 7am yet and I'm hoping

they get someone soon as my daughter Niki has started a new job and she works

3am to 9am Sunday thru Thursday. So I have her help tonight and tomorrow but

as of Sunday, if I don't get someone to sit with Zak at night, looks like I

will be handling both boys at night. Not sure how that will work as they are

in two different rooms, Tryny still has apnea all night from midnight to 6am

and Zak has to be suctioned every 2 hours, but I'll get it done somehow,

always do.

Zak is so different, he weighs 15 pounds now, plays with toys and hands and

rolls everywhere. He is a " baby " this time at home (and not just someone we

can only look as), we can actually play with him.

Just wanted to share my " good news " .

Debra

Posted May 13, 2000 · May 13, 2000

Debra,

What wonderful news! Happy Mothers Day!!!!!

Bonnie

Posted December 27, 2001 · December 27, 2001

In a message dated 12/27/01 11:07:04 AM Eastern Standard Time,

myfishruleWJG@... writes:

> Thank you for letting me join your group. My is 2 1/2 years old and

> diagnosed with autism nov 1. We are setting up services with her now. She

> only gets 3 hours of therapy with early intervention right now I'm waiting

> for paperwork to go threw for more. We just had an evaluation/meeting with

> a

> psychiatrist that works for a private agency to get her wraparound

> services.

> They are offering us 12 hours a week of therapy DTT. My husband is

> concerned

> that this may interfere with the progress that she's made with Early

> Intervention. " This better not make her worse " quote unquote thank you for

> your support cause it's probably the only place that I'll get any.

>

> Sincerely

>

Hi ,

I'm Ron. Step dad to Alec 10, NVLD, Sam 4, autistic and Abbie 3, PDD. I

hope you enjoy the list. Lot's of support here.

As far as further treatment making a child worse, Emory U. in Atlanta told us

the more we bombard the little ones with services and education, the better

off they are. The theory is, it forces them to use part of the brain that

would not ordinarily be used otherwise...hence, a better developed child.

Ron

Posted December 27, 2001 · December 27, 2001

Welcome, . Is your daughter receiving OT and speech through early

intervention? Is she going to a school situation? You will find lots of

support from this group.

Pam

Mom to and Conor

Check out our webpage!

<A HREF= " http://www.geocities.com/oceangirl65/index.html " >Yahoo! GeoCities -

oceangirl65's Home Page</A>

Posted December 27, 2001 · December 27, 2001

Welcome !

We are a very fun group and the best support you'll get, without doubt.

Sounds like you are well under way for just getting a dx a couple months

ago! Good for you!

Where are you from? And why exactly do your " fish rule " ?

Penny

Mom to Jacqui 6, HFA

Jeff 19, NT I guess

Posted December 27, 2001 · December 27, 2001

> Thank you for letting me join your group. My is 2 1/2 years old and

> diagnosed with autism nov 1. We are setting up services with her now.

She

> only gets 3 hours of therapy with early intervention right now I'm waiting

> for paperwork to go threw for more. We just had an evaluation/meeting

with a

> psychiatrist that works for a private agency to get her wraparound

services.

> They are offering us 12 hours a week of therapy DTT. My husband is

concerned

> that this may interfere with the progress that she's made with Early

> Intervention. " This better not make her worse " quote unquote thank you

for

> your support cause it's probably the only place that I'll get any.

:

My son was totally non-verbal at three and he made wonderful progress in a

DTT classroom that our public school system has. The first year he only

went half days and I was frantic to get him more services because, with

autism, the more the better. Nearly all ways of teaching children with

autism recommend intensive one on one therapy of some kind, usually for

20-40 hours per week. Children with autism do vary more, perhaps, even than

NT kids, but still you should find that 12 hours of DTT is very very

beneficial.

Your husband is scared. It is aggravating and frustrating to have feel as

if you are in different places regarding 's dx and treatment, but it is

very common for fathers to be a bit slower on this. It's easier said than

done, but try to go easy on him and let him accept this blow at his own

speed (but don't compromise your daughter's treatment either and THAT is

definitely the hard part).

Salli

Posted December 27, 2001 · December 27, 2001

,

Greetings and Welcome! Well you have come to the right place. All of here can

totally understand what you are going through! I am the Mom of 4. Both boys are

on the spectrum, though they are both high functioning, there are still many

challenges. We just started the process of having my youngest evaled as she is

showing some signs that remind us of when the boys were her age.

Looking forward to getting to know you!

CHRIS

and

Parents of:

Sully 10-94 (AS)

Chenoa 6-96 (NT Mild Speech Delay)

Trevayne 3-98 (PDDNOS, Significant Speech Delay)

and

set 12-99 (Significant Speech Delay)

Sent: Thursday, December 27, 2001 11:03 AM

Subject: new member

Thank you for letting me join your group. My is 2 1/2 years old and

diagnosed with autism nov 1. We are setting up services with her now. She

only gets 3 hours of therapy with early intervention right now I'm waiting

for paperwork to go threw for more. We just had an evaluation/meeting with a

psychiatrist that works for a private agency to get her wraparound services.

They are offering us 12 hours a week of therapy DTT. My husband is concerned

that this may interfere with the progress that she's made with Early

Intervention. " This better not make her worse " quote unquote thank you for

your support cause it's probably the only place that I'll get any.

Sincerely

Posted December 27, 2001 · December 27, 2001

LOL - I just really love my fish - plus about 3 years ago when I started

" online " every name I picked was already taken. I'm not really sure now the

name happened but we had all had a few beers at the time LOL. Now everyone

is so use to it I keep it. When I find myself getting really stressed out

I'll just watch my fish and pretend I'm in there. It's very peaceful and you

know everything is ok there and no one is judging you or looking down on you

or feeling sorry for you. In my next life I hope I come back as a fish LOL.

I life near Philly PA, we're about an hour or so from NYC. There are support

groups in Philly but you couldn't pay me to drive there... I'm a timid

driver.

Thanks for the welcome.

Posted December 27, 2001 · December 27, 2001

Hi !

You'll find lots of support here! It sounds great that they are offering

you the DTT already. We never had any of that here! Grab for all the

services you can get!

Sue in Michigan,

Mom to , 11, HFA, ADD

, 8, HFA, ADD

AIM ID: smg5862

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Posted December 28, 2001 · December 28, 2001

I never did welcome you properly, - welcome!

For my money, I can't imagine why your dh would think DTT would hurt --

IMHO, it's better to try and try than to discount something before you see what

it does! There's always the chance it won't be appropriate for her, but I

don't think it can make her worse...my son was one for whom it wasn't

appropriate, but we did take a few things away from it and integrated them into

daily life with huge success!

Welcome again,

Jacquie

mom to , 5

Parenting Autism moderator

" Am I the only one who allows his mind to prance outside the box? "

--Dale Gribble, from King Of The

Hill

Posted December 28, 2001 · December 28, 2001

In a message dated 12/28/2001 9:23:17 AM Eastern Standard Time,

vhunnius@... writes:

> For my money, I can't imagine why your dh would think DTT would hurt

> -- IMHO, it's better to try and try than to discount something before you

> see what it does!

My husband is having a really hard time excepting the diagnois... actually

it's really easy to dismiss when you don't see her around other kids. She's

friendly, and happy, and beautiful. But she won't talk, she spins and spins

and spins and her arms and legs are like jello. He has two older kids with

his ex wife and they are perfectly normal. 6 months ago before we started

intervention she was just like rainman - no eye contact at all, would just

roam threw the house aimlessly destroying things, I couldn't get her to focus

on anything. I think he's scared that she's going to stop the playing and

stuff that she's gained in the past 6 months. There is so much to be afraid

of isn't there?

Posted December 28, 2001 · December 28, 2001

Thanks Sue. I'm going to wait until they have my therapist come out and then

I'll have her break everything down to me. I already told her coordinator

that I will not do strict aba becuase even if she never talks to me she's a

very happy child. I want her to be happy that's the most important thing.

Not to say that if she screams or cries I'll stop the therapy but I'm not

going to do something that I know won't work. Plus whose to say what doesn't

work today might not work in 6 months? So I give everything 3-6 months and

see the progress. We have a camcorder and once a month I record her

sessions. When I'm ready I sit down and pick out the stregths and any

progress. So far she's doing great but has stopped any progress since her

diagnois.

Posted December 28, 2001 · December 28, 2001

,

The DTT is to help her continue to make progress, not take it away. Have

they described it in much detail to you? If not, have them. If they try

something and it doesn't work, they should change the attempt, not force her

to do it their way. I think this is where the Trial part comes in.

Sue

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Posted December 28, 2001 · December 28, 2001

Welcome !

Kerri

Mom to:

Mitchel 6, Autistic

9 - NT

See the Family: http://www.johnswdwpage.com/family.htm

" I thank God and America for the right to live and raise my family

under the flag of tolerance, democracy and freedom. "

-Walt Disney

new member