Self injuring behaviors

March 11, 2003

Hello, my name is and am Mom to ph (CHARGE) who is 20 years old.

I am desperate for help with his self injurious behaviors. He is delayed in

puberty, and short statured. He is horribly scratching himself, biting, head

banging, slapping his face. I have been working with a behavior specialist

for quite a while. We have ruled out medical issues. We tried Naltrexone

which worked beautifully for a while, then he quit eating and lost 10 pounds.

He only weighs 76 pounds (5 ft), so we couldn't afford the weight loss. We

have tried Paxil only to find it hypes him up, Zyprexa was no better. We are

now on Remeron, which has helped to regulate sleep. His appetite has come

back. He also has started to gag when eating. We worked very hard to get

him to eat regular foods without having to puree. He had an NG tube as an

infant. I am at wits end with this. I have put gloves on him, but he has

figured out how to get them off, and now when we put them on it increases the

behavior. I have put his mattress on the floor away from the wall so he

won't bang his head against the bed frame or wall. We work with deep

pressure, body brushing, joint compression for sensory input. ph is

nonverbal and has autistic like behaviors. If anyone has had any of this I

would love to hear from them or if you know of anyone who may be of help. I

am a single mother, and very stressed and tired. Thank you for listening.

March 11, 2003

Hi ,

I dont have any answers but I feel for you. MY son is 12 and we will be

seeing a developmental ped to ask about Bradley's self injurious behaviors.

He will headbang and bite when upset and leave big bruises. He does this

thing with hitting his knee to his elbow and then it goes to his chin and it

leaves a bruise. He is normally mild mannered and happy. But this self

injury happens frequently. I think it is due to not being able to

communicate. He is deaf and mentallly impaired, short in stature and weighs

56 pounds.

I am here to listen....take care.

March 11, 2003

I had a student who used to headbang and bite. Her self-injurious behavior

really diminished alot since I started using a picture schedule with her.

She was so used to routine, and then I slowly added new things or removed

certain activities. Now she only has a temper outburst or acts very silly

for a couple of days during a one month period. I'm also Deaf, and I require

her aide to sign to her even when there are speaking people around. She is

alot better and adapting to change very well. It might help to explain

things in sign, and symbols, which provides less fustrations.

Smiles

March 12, 2003

I really know how stressed and tired you must feel. When our bangs her

head, it is almost always (maybe 97%) due to undiagnosed ear infections. We

see other self abuse with other physical problems. The problem with all of

this is that, for instance with the ear infections, she clearly feels

something before the doctors can diagnose. It's a long, long road, but we've

learned that when bangs her head, etc., there is a physical reason.

Martha

March 12, 2003

I think trouble communicating can exacerbate the problem, but I don't think

it is the only factor. Even CHARGE kids with excellent comm. skills still

have trouble with many of these behaviors. I believe it is related to brain

chemistry, which can be impacted by medications but also by social

relationships, situations of mastery and competence, feelings of belonging,

praise and recognition; all which can be limited, due to the combined vision

and hearing loss. Then of course there is the gut/mind connection and all

the other physical problems and pain that complicate everything entirely. I

look for the day when I can figure Dylan out. Some days he is so excessive;

frantic with everything, eating, spinning, throwing, easily frustrated.

Other days he is not. On the excessive days, I am sure it is physically

caused.

I hope you find answers for ph soon!!!!! Not having a partner to trade

off with those situations must be very tiring.

Kim

Mom to Dylan 6 CHARGE, Kayla 12, Tyler 14

> Hi ,

> I dont have any answers but I feel for you. MY son is 12 and we will be

> seeing a developmental ped to ask about Bradley's self injurious behaviors.

> He will headbang and bite when upset and leave big bruises. He does this

> thing with hitting his knee to his elbow and then it goes to his chin and it

> leaves a bruise. He is normally mild mannered and happy. But this self

> injury happens frequently. I think it is due to not being able to

> communicate. He is deaf and mentallly impaired, short in stature and weighs

> 56 pounds.

> I am here to listen....take care.

>

March 12, 2003

Dear ,

I think I remember you from Portland? I can really empathize with what

is going on.

You have tried medicines and not seen the results you are hoping for.

It seems like looking for a needle in the haystack sometimes.

We are following a protocol recommended for kids with autism with Kendra

so I thought I would mention it in case it interests you. She is

needing certain elements like zinc and vitamin B6 which seem to be

helping her. We went to a clinic which is near Chicago and she was

tested.

Zinc helps the immune system and also can be helpful when kids don't eat

(are anorexic like), have diarrhea, are small and/ or have other immune

system issues.

It's my strong belief that when we see these difficult behaviors it is

more than likely that dietary or digestive factors play a part. I think

it might be worth investigating to see if gluten or casein problems are

at least partly responsible for the difficulties. It's a lot easier to

test out gluten or casein intolerances or allergies than to live with

some of the behaviors as you have mentioned. And as has been discussed,

it's possible pain is involved.

I was wondering if constipation or diarrhea is involved? Can you tell

us a little more about the behaviors such as did they recently escalate

or have they been getting worse over time? Were there any other changes

such as medical or dental interventions or illnesses or changes in daily

activities?

Best of luck. I don't believe that for us (I mean our family)

traditional gastroenterologists or other doctors seem to have the key.

But that is our personal experience. However, I do believe there are

answers out there especially for the autistic-type of behaviors.

For us I find that seeking some non-invasive approaches such as trying

to get adequate sunlight during the day and stopping ANY sugar and

limiting carbohydrates seems to be an approach that I am comfortable

with and which seems to help Kendra. Sunlight between the hours of 10:00

am and 2:00 pm (but only for an hour at a time)is said to help the

body's own melatonin system. That help may improve sleep and thereby

improve many other things. I think the problems you see may definitely

be related to problems with the neurotransmitters. Kendra responds

incredibly well to the medication 'celexa' which alters the way she uses

seratonin. Even though I am not happy using the medication, I know she

needs it and responds very favorably at this time.

Mom to Kendra, 16 CHARGE , 22 and Camille, 25

Self injuring behaviors

Hello, my name is and am Mom to ph (CHARGE) who is 20 years

old.

I am desperate for help with his self injurious behaviors. He is

delayed in

puberty, and short statured. He is horribly scratching himself, biting,

head

banging, slapping his face. I have been working with a behavior

specialist

for quite a while. We have ruled out medical issues. We tried

Naltrexone

which worked beautifully for a while, then he quit eating and lost 10

pounds.

He only weighs 76 pounds (5 ft), so we couldn't afford the weight loss.

We

have tried Paxil only to find it hypes him up, Zyprexa was no better.

We are

now on Remeron, which has helped to regulate sleep. His appetite has

come

back. He also has started to gag when eating. We worked very hard to

get

him to eat regular foods without having to puree. He had an NG tube as

an

infant. I am at wits end with this. I have put gloves on him, but he

has

figured out how to get them off, and now when we put them on it

increases the

behavior. I have put his mattress on the floor away from the wall so he

won't bang his head against the bed frame or wall. We work with deep

pressure, body brushing, joint compression for sensory input. ph is

nonverbal and has autistic like behaviors. If anyone has had any of

this I

would love to hear from them or if you know of anyone who may be of

help. I

am a single mother, and very stressed and tired. Thank you for

listening.

March 12, 2003

,

I don't recall seeing you on the list before. I am the Mother

of a 19 year old CHARGE boy. Mark also has had feeding issues and is still on

a ground diet, He had a TEF repair. He also has done the scratching, hitting

his head, biting his hands. He now at times becomes real agitated on the

school bus kicking and getting out of his seat. It has been a MAJOR problem

area for us. He was on Catapres and Depakote and was switched to Wellbutrin

and a smaller dose of Depakote. He sleeps much better now. The Catapres

increased his appetite and he was getting chubby. He has lost 10 lbs since

being off it which is ok because he is about 5'4 " and 125. And much stronger

than Mom. I would like to speak with you anytime. Mark is also non verbal but

does know some basic sign language. I feel for you these issues are extremely

difficult.

March 12, 2003

Hi ,

I live outside of Chicago. Do you remember where you brought Kendra. I would

be interested. Thanks.

Celeste (nne CHARGE 19)

Keedy wrote:Dear ,