CHARGE - Behavior - Pain - Brain Meds

[Guest guest]

Beware - this is long and may be a little ranting! I apologize!

Here's a little history on . She is 6 years old and 32 lbs (she smaller

than her 4 year old sister!) and very cute! She communicates with gestures and

sounds - she can sign but doesn't often - this is a source of frustration for

all of us! She suffers from CHRONIC sinus infections and is constantly on

strong inhaled antibiotics! She had sinus surgery in November, relaxed for a

couple of days while recovering, and then had raging ear and sinus infections

which she still has - a CT is scheduled for Monday. She has behavior problems

when she is in pain that I think now she developed in to bad habits. She pulls

hair - she brought a 6 foot doctor to the ground!, attacks babies, pinches, and

gouges eyes - the most dangerous habit! Some days this behavior is non stop and

I have to put her in a car seat or rifton chair so she doesn't injure her

sisters or the dog. She goes to a wonderful school for special needs children -

there are 9 kids and 11 teachers/therapists.

Today, the director of the school, who is wonderful by the way, said they have

exhausted their " behavior " resources and is creating a safety problem.

is delighted by terrorizing one specific boy and is going after the bigger

boys and they are cowering. She also went after a teacher. (Mainly eye

scratching.) They were talking about touch, soft touch and bad touch, like

scratching, and just started laughing - like she was remembering what she

had done earlier to a boy at school - this was frightening. They are planning

to consult a child psychologist that they work with on behavior issues.

I'm so torn. I believe with all my soul that her behavior is pain driven. I

can tell now that she is suffering now because she has a low grade fever, picks

at her gums, picks at her fingers, is aggressive and is very fussy and tense.

She is constantly on Motrin and it helps a little. I am coming to terms with

the fact that she will always be in pain and even though we will continue to get

to the root cause of the pain, I need to equip her to deal with the pain. I

believe that she is developing bad habits and now I'm not sure what to do or who

to consult. I think the psychologist is a good idea - we need to get to what

she " getting " from the eye scratching - maybe an adrenaline rush and the pain

goes away? UUURRGGG! Her pediatrician knows her very well and I would trust a

recommendation but I think I would like the neurologist to be involved if we

need to start her with brain/behavior meds - she is already on imipramine for

cyclical vomiting/migraines which is an antidepressant and I want a pediatric

expert not just a prescription writer. I am scared to death that drugs will

suppress the " behavior " and she will not be able to " tell " me that she is

suffering from pain!

My cute little is causing a safety problem at school and terrorizes her

sisters, the dog, and her dad! I can't believe it (although I've got the scars

to prove it!) and I don't know which expert to go to!

Thanks for listening.

Lori Myers

Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal

Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of

12/22/04!, and Emma (4).

Dallas, Texas

[Guest guest]

im on sipramil it works quite well

>

> Beware - this is long and may be a little ranting! I apologize!

>

> Here's a little history on . She is 6 years old and 32 lbs (she

> smaller than her 4 year old sister!) and very cute! She communicates with

> gestures and sounds - she can sign but doesn't often - this is a source of

> frustration for all of us! She suffers from CHRONIC sinus infections and is

> constantly on strong inhaled antibiotics! She had sinus surgery in November,

> relaxed for a couple of days while recovering, and then had raging ear and

> sinus infections which she still has - a CT is scheduled for Monday. She has

> behavior problems when she is in pain that I think now she developed in to

> bad habits. She pulls hair - she brought a 6 foot doctor to the ground!,

> attacks babies, pinches, and gouges eyes - the most dangerous habit! Some

> days this behavior is non stop and I have to put her in a car seat or rifton

> chair so she doesn't injure her sisters or the dog. She goes to a wonderful

> school for special needs children - there are 9 kids and 11

> teachers/therapists.

>

> Today, the director of the school, who is wonderful by the way, said they

> have exhausted their " behavior " resources and is creating a safety

> problem. is delighted by terrorizing one specific boy and is going

> after the bigger boys and they are cowering. She also went after a teacher.

> (Mainly eye scratching.) They were talking about touch, soft touch and bad

> touch, like scratching, and just started laughing - like she was

> remembering what she had done earlier to a boy at school - this was

> frightening. They are planning to consult a child psychologist that they

> work with on behavior issues.

>

> I'm so torn. I believe with all my soul that her behavior is pain driven.

> I can tell now that she is suffering now because she has a low grade fever,

> picks at her gums, picks at her fingers, is aggressive and is very fussy and

> tense. She is constantly on Motrin and it helps a little. I am coming to

> terms with the fact that she will always be in pain and even though we will

> continue to get to the root cause of the pain, I need to equip her to deal

> with the pain. I believe that she is developing bad habits and now I'm not

> sure what to do or who to consult. I think the psychologist is a good idea -

> we need to get to what she " getting " from the eye scratching - maybe an

> adrenaline rush and the pain goes away? UUURRGGG! Her pediatrician knows her

> very well and I would trust a recommendation but I think I would like the

> neurologist to be involved if we need to start her with brain/behavior meds

> - she is already on imipramine for cyclical vomiting/migraines which is an

> antidepressant and I want a pediatric expert not just a prescription writer.

> I am scared to death that drugs will suppress the " behavior " and she will

> not be able to " tell " me that she is suffering from pain!

>

> My cute little is causing a safety problem at school and terrorizes

> her sisters, the dog, and her dad! I can't believe it (although I've got the

> scars to prove it!) and I don't know which expert to go to!

>

> Thanks for listening.

>

> Lori Myers

> Spouse - Trent, Children - (9), (6, CHARGE Syndrome,

> Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days,

> Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing

> loss, walking as of 12/22/04!, and Emma (4).

>

> Dallas, Texas

>

>