Re: Medication

[Guest guest]

Jill,

My Mark was put on Clonidine when he was about 11 for behaviors. One of

the side effects is weight gain. That was one of the reasons the neurologist

chose it for Mark. He was real scrawny at the time he was on it for 7 years.

We just did a medications switch because it no longer seemed to be working.

He had quite a belly by the time we stopped it. has always had eating

problems due to a TEF at birth and swallowing difficulties. He was tube fed

until about 8 it came out at about 11. We have been off it about a year and

he has lost about 10 lbs which is ok now that he is bigger tan me and much

stronger.

[Guest guest]

,

Thanks for the reply. It would be a nice side effect for the weight gain.

The Neologist said we might try Strattera ( a new attention drug with no tic

side effects) It still has a loss of appitite side effect but, maybe it would

be cancled out by the clonidine. We shall see. All I can do is try right.

Good luck with Mark. I hope the new drug works for him.

Jill ( Mom to twin Chargers, and Zachary 7yrs)

[Guest guest]

Jill,

My 5 yr old is on methylphenidate (Ritalin) and it works quite well for her

attention problems. We are on a low dose now but I can see us having to " up " it

for school, beginning in the fall. Clonodine was considered, but rejected due

to the possible heart issues clonodine can cause.

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 11, and wife to Graeme

Saint , New Brunswick, Canada

Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Medication

Hi all,

I am a mother of twin cHARGErs and one of them has PDD/autism. I started

him on Clonidine because he developed a tic due to a strep virus. I really

need to start him on something for attention span and focusing. Does anyone

have their children on clonidine and something else or what meds are being

used for attention and their side effects. I am really conserned with weight

loss because he is only 37lb and he is 7 years old.

We are also on Growth hormone because the twins are IUG babies and were

slightly deficient. of course we are having trouble with the insurance and

we are hoping medicade will pick it up. I really hate the insurance co.!!!

I am always fighting with them.

Jill, Mother to STephen and Zachary (7yrs old) and Mark ( husband ). From NY

[Guest guest]

In a message dated 2/24/2003 11:37:35 AM Eastern Standard Time,

JillZ211@... writes:

> <A HREF= " mailto:JillZ211@... " >JillZ211@...</A>

[Guest guest]

,

There are many other supplements that you can add to food for increase in

calories. ie ( pro-mod, ) some are protein supp and others are extra

calories. Try talking to a nutritionist for names of different ones. Some

will need a doctors script but, others will not. Many can be orderd special

and paid for by different providers. READ as much as you can. It really

helped!!! Jill ( Mom to twin Chargers)

[Guest guest]

,

We don't use the G-tube any more. We had intence oral-motor training and he

now eats only orally. We are going to get the tube removed this year! He is

7yrs now but, he got the tube at 1month old. He had major reflux issues and

it was effecting his breathing!! What a way he came!! Jill

[Guest guest]

Jill,

You said you had intense oral-motor training did your charger have aspiration

problems? We have a g-tube and I really want my son to start eating orally he

loves to drink but aspirates so I don't know what else to do. No one will work

with him orally because of this.

mom to Wyatt 4yrs charger

Re: Medication

> ,

> We don't use the G-tube any more. We had intence oral-motor training and he

> now eats only orally. We are going to get the tube removed this year! He is

> 7yrs now but, he got the tube at 1month old. He had major reflux issues and

> it was effecting his breathing!! What a way he came!! Jill

>

>

>

[Guest guest]

,

Yes, Zachary did have aspiration issues. We had many floroscopies diagnosing

it. We did see an oral motor specialist in South Salam, CT through the Sara

group. She preformed miricles with both boys and finally got them to

eat solid food by 3 1/2 years old. Before that it was puree food and Gt

feedings!! We still go to her to increase strength and controling breathing

to assist in speech. They have many oral motor weeknesses and poor muscle

control but, they have really improved!! She set a plan and gave me very

specific exercies to do with them and we saw her every 3-6 mo to update the

plan. It was and still is hard work but, that is our lives anyway right!!!

Good - luck and let me know if I can help!!

Jill ( mom to twin chargers and Zachary 7yrs) wife to Mark

[Guest guest]

We are seeing a OT person on Monday and I know she is going to say that because

of Wyatts aspiration issues not to feed him. Does anyone have suggestions for us

to ask her or is there someone else that we should be seeing? We are so stressed

that Wyatt is almost 5 and does'nt speak. He has a trach and when we put on his

speaking valve he loves it but he doesnt know how to make the " right sounds " I

know our OT person should have some influence in this and he wants to take

drinks but I honestly don't think she knows what to do with Wyatt. Anyone have

suggestions for me on how to get Wyatt to eat safely and to help him learn how

to speak or who we need to be talking to? We are running into dead ends

everywhere we go. Any help would be appreciated. We live in Ks close to MO.

mom to Wyatt 4 1/2 wife to Zane

Re: Medication

> ,

> Yes, Zachary did have aspiration issues. We had many floroscopies diagnosing

> it. We did see an oral motor specialist in South Salam, CT through the Sara

> group. She preformed miricles with both boys and finally got them to

> eat solid food by 3 1/2 years old. Before that it was puree food and Gt

> feedings!! We still go to her to increase strength and controling breathing

> to assist in speech. They have many oral motor weeknesses and poor muscle

> control but, they have really improved!! She set a plan and gave me very

> specific exercies to do with them and we saw her every 3-6 mo to update the

> plan. It was and still is hard work but, that is our lives anyway right!!!

> Good - luck and let me know if I can help!!

>

> Jill ( mom to twin chargers and Zachary 7yrs) wife to Mark

>

>

>

[Guest guest]

Dear ,

Much evidence says that it is not necessarily a requirement that you can

eat orally before you speak. Therapies to help the two conditions can

vary significantly.

What is Wyatt's hearing level?

I would engage a speech therapist who is familiar with trachs and the

possible hearing loss if there is one. Have you read the Apraxia-kids

website? Even if apraxia is not present, and it could be, the website

is excellent in helping communicaiton issues. PROMPT therapy might help

some kids speak.

I would work very hard on establishing a form of communication even if

it is not speaking or signing just yet. That can come. I believe in

PECS and other forms to make a bridge to speaking or signing.

I once spoke with a wonderful speech therapist in Kansas City Kansas.

Is there a Mercy Hospital there? The speech therapist I spoke with

worked with kids having complex communication problems. I don't believe

I have her name any more, but perhaps there is someone there who would

be of help. I think they had a noteworthy communications disorders

program.

Not eating orally will not necessarily stop one from speaking. A trach

makes things more complex.

Our daughter had a trach for 3 years. Her improvement in eating came

after the removal of the trach and after thermal therapy and adjustment

of the hyoid bone in her shoulder/neck area.

Very, very best of luck.

Mom to Kendra, and Camille

California

Re: Medication

We are seeing a OT person on Monday and I know she is going to say that

because of Wyatts aspiration issues not to feed him. Does anyone have

suggestions for us to ask her or is there someone else that we should be

seeing? We are so stressed that Wyatt is almost 5 and does'nt speak. He

has a trach and when we put on his speaking valve he loves it but he

doesnt know how to make the " right sounds " I know our OT person should

have some influence in this and he wants to take drinks but I honestly

don't think she knows what to do with Wyatt. Anyone have suggestions for

me on how to get Wyatt to eat safely and to help him learn how to speak

or who we need to be talking to? We are running into dead ends

everywhere we go. Any help would be appreciated. We live in Ks close to

MO. mom to Wyatt 4 1/2 wife to Zane

Re: Medication

> ,

> Yes, Zachary did have aspiration issues. We had many floroscopies

> diagnosing

> it. We did see an oral motor specialist in South Salam, CT through

the Sara

> group. She preformed miricles with both boys and finally got

them to

> eat solid food by 3 1/2 years old. Before that it was puree food and

Gt

> feedings!! We still go to her to increase strength and controling

breathing

> to assist in speech. They have many oral motor weeknesses and poor

muscle

> control but, they have really improved!! She set a plan and gave me

very

> specific exercies to do with them and we saw her every 3-6 mo to

update the

> plan. It was and still is hard work but, that is our lives anyway

right!!!

> Good - luck and let me know if I can help!!

>

> Jill ( mom to twin chargers and Zachary 7yrs) wife to Mark

>

[Guest guest]

-Try a Speech/Feeding Therapist. Try in conjuction with the OT.

Barbara-momNATHAN(CHARGE)9,Rosie13