Re: Kennedy Krieger Institute

[Guest guest]

Dear Steffi,

I don't have experience with their behavior program but have lots and

lots of respect for Kennedy Krieger Institute in general. It's nice you

have neurologists willing to look at treatment options. It sounds like

they really want to help.

I wondered if you find it possible to follow dietary interventions?

There is so much evidence out there about certain possible causes of

certain behaviors. You've probably been down that road, but if not I

wanted to mention it. We've seen improvement in Kendra following

nutritional protocols. Baker has also found improvements by

limiting casein and gluten for her son. It's my personal opinion that

there are SEVERE digestive problems in *some* individuals with CHARGE.

I like the book: Children with Starving Brains by Dr.

McCandless for the information within even though I don't agree with all

the suggested treatments. I'm wondering if the Kennedy Krieger

Institute uses nutritional approaches in their behavior program? They

might.

I forgot which state you are in. I know you are in the East. If you're

near Pennsylvania, there is a great biochemical conference coming up

soon addressing ways to improve and resolve in some cases autistic types

of behaviors.

I hope things improve very, very soon.

Kennedy Krieger Institute

Hi all. Has anyone heard of, or used the in-patient behavior program at

the

Kennedy Krieger Institute? I am looking into it for my son, .

For

those who don't know him.....Nick is 4 years old and has become VERY

aggressive. He has self abusive behaviors which have recently elevated.

He

bites himself and breaks through his skin, bangs his head hard into the

floor

(now wears a helmet all day), punches himself in the head and face, and

hits

others (both adults and children). We are currently back on the

medicine

that worked best for Nick after a long battle with some other meds, but

after

many consultations with the neurologists, they are leaning to this

program.

Any feedback you have will be greatly appreciated.

Steffi - getting gray hair more and more by the minute!!!!

[Guest guest]

Steffi, sorry I have no experience with this--but I hope you find the answer

soon. Will we see you in Cleveland?

, mom to timmy 7.5, keegan 5 and liam 2.5 wife to pat

Kennedy Krieger Institute

> Hi all. Has anyone heard of, or used the in-patient behavior program at

the

> Kennedy Krieger Institute? I am looking into it for my son, .

For

> those who don't know him.....Nick is 4 years old and has become VERY

> aggressive. He has self abusive behaviors which have recently elevated.

He

> bites himself and breaks through his skin, bangs his head hard into the

floor

> (now wears a helmet all day), punches himself in the head and face, and

hits

> others (both adults and children). We are currently back on the medicine

> that worked best for Nick after a long battle with some other meds, but

after

> many consultations with the neurologists, they are leaning to this

program.

> Any feedback you have will be greatly appreciated.

>

> Steffi - getting gray hair more and more by the minute!!!!

>

>

>

[Guest guest]

Steffi,

I've not had any experience with the KK clinic, I've heard varying opinions on

it but no personal experience. I am so sorry you are still going through all

the behaviour stuff. FORTUNATELY, I am thrilled to say Kennedy has come round

180 degrees with her behaviour and I couldn't be happier. She still has her

" moments " but she wouldn't be a regular kid without them. She is listening

more, understanding more and 1-2-3 has saved my life. I understand Nick's

behaviours are different (as are all kids) and will require different treatments

but keep your chin up girl, things can change. I hope we will be seeing you in

Ohio, a CHARGE conference wouldn't be the same without you...

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, 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

Kennedy Krieger Institute

Hi all. Has anyone heard of, or used the in-patient behavior program at the

Kennedy Krieger Institute? I am looking into it for my son, . For

those who don't know him.....Nick is 4 years old and has become VERY

aggressive. He has self abusive behaviors which have recently elevated. He

bites himself and breaks through his skin, bangs his head hard into the floor

(now wears a helmet all day), punches himself in the head and face, and hits

others (both adults and children). We are currently back on the medicine

that worked best for Nick after a long battle with some other meds, but after

many consultations with the neurologists, they are leaning to this program.

Any feedback you have will be greatly appreciated.

Steffi - getting gray hair more and more by the minute!!!!

[Guest guest]

In a message dated 4/29/03 3:05:20 PM US Eastern Standard Time,

j.vdijk@... writes:

<< By the way I will speak at the Charge conference about these

problems. >>

Great, maybe we can speak at sometime. Zak's behavior is really becoming a

huge issue. It doesn't have anything specific that sets it off, and most of

the time, I don't think he even realizes he's doing it. As long as we keep

the restraints on his arms, it subsides some (even though he can still reach

places on his body) but as soon as you take them off (giving baths or just

relaxing his arms) he frantically goes for anywhere he can reach. The

medications don't seem to do much besides make him lethargic for a couple of

hours.

I hate having to restrain his arms and hands but I hate all the open wounds

worse.

Debra

[Guest guest]

In a message dated 4/29/03 3:42:47 PM US Eastern Standard Time,

gweir@... writes:

<< but that Kennedy began to understand more - more language, more about the

consistent consequences >>

That's the other hugh problem with Zak, he has NO communication at all. He

can't output any and doesn't seem to understand much. He is missing 2/3 of

his frontal lobes so the neurologist doesn't give Zak much hope in the

communication department.

Debra

[Guest guest]

In a message dated 4/29/03 4:28:03 PM US Eastern Standard Time,

klauger@... writes:

<< I already deleted the list of meds Zak is on. Is there anything on it that

has to do with serotonin levels? >>

Kim,

Zak has been on Tegretol for about a year, risperadal for a couple of months,

atarax for about 3 weeks and the naltrexone for about a week. We use the

chloral hydrate at night if he wakes up in the middle of the night (as he

will dig and pull out skin ). He was on valium from 7 weeks to 2 years old

and now that doesn't work at all.

Yes, Zak will dig out hunks of skin, scratch until he gets a deep wound, and

especially scratch the back of his ear and then pull on the lobe until he

almost pulls the ear lobe off (completely from the back). And I keep his

hair buzzed but he still pulls out his hair.

He has scars all over, his arms, his legs, his face and neck, his ears and

head and now his stomach. He used to bite himself terribly and after having

his arms nothing but open wounds, we had our plastic surgeon and an oral

surgeon pull out all of his teeth. Now we keep his nails cut down really

low but hs still uses them to keep open sores all over.

And he throws such tantrums, flinging himself backwards, wildly swinging his

arms, arching his back while kicking and being trached, he will cough so hard

that he puts himself into distress.

We nicknamed him when he was about 5 months old and all his doc's call him by

his nickname now: Captain Nasty..................

Thanks for helping and for any advice you can give me. I'll pass anything on

to the neurologist and developmental ped.

Debra

[Guest guest]

Debra,

I think the big thing really was not anything WE did, but that Kennedy began to

understand more - more language, more about the consistent consequences for bad

behaviours, etc. That, plus a low dose of ritalin has really been working for

us (knock wood)

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, 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

Re: Kennedy Krieger Institute

In a message dated 4/28/03 4:34:23 PM US Eastern Standard Time,

gweir@... writes:

<< I am thrilled to say Kennedy has come round 180 degrees with her behavior

and I couldn't be happier. >>

,

HOW did you accomplish that?!?!?!?!?!?!?!?!?! We are really having a

horrible time with Zak and his self abusive behavior. We have him on

Tegretol, Risperdol, Naltrexone ahd Chloral Hydrate and we also have him in

arm restraints 24/7 with his hands bandaged up and he still claws hunks of

skin out and pulls out his hair.

We are to the point of considering the KK Institute (even though I can't

stand the thought of leaving him up there. But I can't stand all the open

sores all the time either. We even had ALL his teeth pulled out last year to

stop the biting of himself.

Any help you can send my way will be greatly appreciated,

Debra

[Guest guest]

Debra,

I already deleted the list of meds Zak is on. Is there anything on it that

has to do with serotonin levels? If I recall there was risperadal, an

anti-anxiety and 2 seizure type meds. I was just talking to a developmental

psychologist about another child (non-CHARGE, great language, etc.) who

picks at his arm until he bleeds and they scab. He has scars all up and

down his left arm. He says this is related to serotonin and is calming

which fits in with prior discussions on this list that serotonin is

definitely involved.

How difficult it must be for all of you.

Kim

> In a message dated 4/29/03 3:05:20 PM US Eastern Standard Time,

> j.vdijk@... writes:

>

> << By the way I will speak at the Charge conference about these

> problems. >>

>

> Great, maybe we can speak at sometime. Zak's behavior is really becoming a

> huge issue. It doesn't have anything specific that sets it off, and most of

> the time, I don't think he even realizes he's doing it. As long as we keep

> the restraints on his arms, it subsides some (even though he can still reach

> places on his body) but as soon as you take them off (giving baths or just

> relaxing his arms) he frantically goes for anywhere he can reach. The

> medications don't seem to do much besides make him lethargic for a couple of

> hours.

>

> I hate having to restrain his arms and hands but I hate all the open wounds

> worse.

>

> Debra

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

i waited over 6mos to go w/erika and 2 weeks before we were to go, after our

insurance approved it, they called and finally looked at the video i had sent

and they told me erika needede to learn how to swallow better first before

we could go! i was sooooo mad, and i explained the reason i was going was TO

GET her to swallow.

cathie, mom to erika

[Guest guest]

I'm probably reading my mail in the middle again, but how old is your son?

We've seen self-abuse on and off for years, but I can't really respond until

i Martha

[Guest guest]

In a message dated 4/29/2003 8:20:38 PM Pacific Daylight Time,

lewcap@... writes:

> but how old is your son?

>

Zak is 3 years, 8onths old