Re: self abuse

[Guest guest]

Hi ,

My name is Terri Nessralla. My son Adam is a 12 yr old charger. He is very

self abusive and has been for years. He bites his hands when he seems mad but

when he was younger he bit his hands constantly. He would draw blood. His

fingers became very calasted. He also pinches himself around his genital area

creating numurous bruises. Slaps himself in the head and out of the blue will

attack any person in his path. There are many other problems I could tell

about him but I will save that for another time. Anyway, we have taken Adam

back & forth to Boston Childrens Hospital for his behavior. He was put on

clonodine in the beginning. It calmed him down for a few hours. When it wore

off his behavior problems returned. After a few months he seemed to build up

an ammunity to it. The doctor raised his dose and added Luvox. Adam became

wild on this med. Running around the house like a crazy person. Totally

NUTS!! I took him off that med immediately. Now he has been put on trazadone

along with clonodine and he seems a lot easier to handle although he still

has his moments. I would have your doctor try these meds on your child. These

are safe drugs for children with heart problems as Adam does have a heart

condition. I hope you can find a solution for your charger. Good Luck and

keep us informed.

Happy Holidays & Happy New Year!!!!!

Terri Mom to Adam 12 Charger 14 14 6

[Guest guest]

Hello ,

I can appreciate the difficulties you have experienced. We also

have a lot of difficulties with picking and biting of hands. For

our daughter, wearing gloves works fine, but she is older. If she

has a bandaid or a glove or mitten on her hands, she tends to leave

them alone. I'm sure the behavior is profoundly affected and caused

by biochemical imbalances primarily and communication difficulties

secondarily.

For us, I believe that serotonin in one of the problem areas in some

kids and that some of the difficulties may be caused by digestive

problems. Our daughter improved dramatically once we found a

medicine that seemed to keep serotonin in her brain longer. It

allowed her to sleep and interact more, reduce spinning behavior and

so on. It reduced the chewing of clothes and somewhat reduced

picking at fingers.

It's my belief that there is a definite digestive component to the

behaviors that are so often associated with charge. Combined vision

and hearing loss is extremely impactful as are sensory integration

disorders.

For us, we read about several nutrients including zinc, essential

fatty acids and Vitamin B6 and look into other dietary

interventions. I believe that charge itself or combinations of

problems stemming from the stressors of illness and surgeries and

antibiotics and other medicines lead to problems with getting the

appropriate and necessary nutrients. I believe there may be

problems with enzymes and with proteins. I think the resulting

problems are inability to go to sleep or stay asleep and

difficulties with learning, communicating and interacting.

It's also possible that nutrients such as magnesium may help with

picking at fingers.

We have found that since there are no definitive answers available

to help with some of these hard questions, we have done a lot of

reading and investigating ourselves. I believe that illness,

possibly strep (look into the phenomenon of PANDAS on the web which

relates obsessive compulsive disorders to strep infections),

possibly vaccines, silver amalgam fillings (in the child, but also

possibly from the parent originally) can contribute to conditions we

see in CHARGE and that looking at healing and strengthening the

immune system seems to me to hold possible answers.

We believe that an hour in the sun can have a positive effect on the

production of melatonin, which can affect sleep and that good sleep

is an essential component of healing the immune system. Since your

son has adverse reactions to some medicines, this may be something

that could help without side effects. It's recommended that glasses

are not worn during that hour and the best results are seen when sun

is accessed between 10:00 am and 1:00 pm. It seems simple, but it

does help for some individuals. Neurotransmitters can be helped by

the sunlight. Vitamin D is also a necessary nutrient gained by

sunlight.

I hope that some of these ideas are helpful. You have brought up a

really important question about the picking and biting. I hope that

in the not too distant future there are more definitive answers.

Best wishes,

, mom to Kendra, 16 CHARGE, , 22 and Camille 24

> My name is Fox. My son Garin is 7 years old and has CHARGE

> syndrome. We have been in and out of the hospital with the usual

> CHARGE problems, but for the past 3 years he has a fixation on his

> hands and fingers. He is mutalating his fingers by biting and

> picking his hands. We have taped socks on his hands and put

splints

> on his arms but nothing has worked. His neorologist has had him

on

> Luvox and Choloralhydrate because he does not hardly sleep. He

has

> an adverse reaction to most meds, so the Luvox made him crazy.

They

> have also put him on Busbar and he had the same reaction. His

doctor

> finally sent us to a behavior doctor, which was a waste of time.

They

> put him on Seroquel which almost drove him insane. He gained 3

> pounds in a month so the heart doctor said to take him off of

that.

> We are at our wits end. We have tried everything. We live in a

> small town and no one really wants to mess with him. The doctors

> have seen his infected hands and all they give us is some

Bactroban

> oint. The drugs they have had him on alter the mind. There is

> nothing wrong with his mind. He acts like he is coming out of his

> skin. He crys out often, bites, scratches intensely and seems to

be

> in pain. If anyone has any suggestions or comments please Email

me.

> Thank you,

>

> Fox

> Big Spring, Texas

[Guest guest]

Our son, BRadley, is a 12 year old CHarger and his self abusive behaviosr are

hitting his head and hitting his knee to his elbow and it will then hit his

head. It is an odd way he does that but ultimately the head is jarred. We

know that it is a hard hit as we have stopped it before he hits his head and

felt the force ourselves. He may not even be angry or anything that you can

tell but for some reason he will do these behaviors. WE try to redirect and

give him other things to do but to no avail. Since he has been home from

school we have noticed he is doing the hitting more often. He has bruises on

the knee and elbow but now during this vacation he has a bruise on the side

of his head. Which doc will prescribe the meds you are talking about and

what are the side effects? I dont really want him on anything but we may

have to resort to it.

He is mentally impaired and deaf so there are other issues of communication.

But I really feel that he thinks he has to do this behavior...a sort of OCD

type behavior. He had very minimal communication even though we have been

working on signing and picture word exchange.

ANy info from all of you would be appreciated.

and family

[Guest guest]

Dear ,

Because the blows to the head have been known to cause detached

retinas in some CHARGERs who have colobomas, I can especially

understand your concern. Does Bradley have colobomas? Whether he

does or not, you seem wise to try to find something immediately to

stop the behavior.

Psychiatrists can prescribe these medications that affect behavior

as can neurologists. I don't have experience with developmental

pediatricians prescribing them, but perhaps that is an option as

well. After a neurologist prescribed medication for Kendra, the

general pediatrician has kept up with the renewals.

My personal feeling is that the immune system is partly to blame.

The PANDAS site goes into depth of how strep infections or repeat

strep infections or subclinical strep infections may be related to

obsessive compulsive behavior. My own suspicion is that the

antibiotics also set up a scenario where the behaviors may appear or

worsen.

Any time you use medication, there is of course possibilities of

interactions or side-effects. That is why I have tried to find the

reason for the behaviors and to see if there is something that can

be improved or healed biochemically by working on the immune

system. Dealing with yeast overgrowth, limiting sugar, reducing

allergens or elements to which there are sensitivities would seem to

be wise. Some people have had remarkable results limiting or

eliminating casein or gluten by eliminating milk and wheat or wheat

like products, but there can be ramifications to that approach as

well. So if undertaken, the approach should be supervised by a

doctor familiar with nutritional approaches.

My take is that omega 3 fatty acids may be deficient, sunlight helps

melatonin production as well as neurotransmitters (which the

medicines often are trying to increase as well), there may be

allergenes to wheat, milk, yeast or mold or a number of other

culprits, enzymes may not be present or efficient and the actual

nerves that help the digestion process along in the bowel may not be

present or may be diminished due to CHARGE possibly or other

medicines or interventions.

One reason I suggest the wheat and milk allergy theory is that if

there is a problem digesting them, the result is a condition where

the pain receptors may not be working. This " could' explain why

someone could bang themself and get bruises and perhaps not feel the

pain. There are other possible explanations as well.

We have had some success in utilizing approaches that address the

above conditions. My own personal feeling is that improving the

immune system is at least part of the answer.

> Our son, BRadley, is a 12 year old CHarger and his self abusive

behaviosr are

> hitting his head and hitting his knee to his elbow and it will

then hit his

> head. It is an odd way he does that but ultimately the head is

jarred. We

> know that it is a hard hit as we have stopped it before he hits

his head and

> felt the force ourselves. He may not even be angry or anything

that you can

> tell but for some reason he will do these behaviors. WE try to

redirect and

> give him other things to do but to no avail. Since he has been

home from

> school we have noticed he is doing the hitting more often. He has

bruises on

> the knee and elbow but now during this vacation he has a bruise on

the side

> of his head. Which doc will prescribe the meds you are talking

about and

> what are the side effects? I dont really want him on anything but

we may

> have to resort to it.

> He is mentally impaired and deaf so there are other issues of

communication.

> But I really feel that he thinks he has to do this behavior...a

sort of OCD

> type behavior. He had very minimal communication even though we

have been

> working on signing and picture word exchange.

> ANy info from all of you would be appreciated.

> and family