Re: Need Tim H./ Dr.Kim/ D. Brown to help me with violent SIB behaviors

[Guest guest]

I don't post much, but my son ph is going thru some serious SIB

behaviors, that I have not been able to get a handle on. I am fighting with

doctors

to get some medical issues ruled out, especially of his abdomen (chronic

constipation, we are working on). The main problem is his doctor left in June

and

all we have seen is temporary doctors while they search for a regular one to

replace his former. The SIB behavior that is causing the concern is gouging

his upper lip until it is bleeding. Let me describe the set up to the

behavior.

It starts with wildly flaying his arms and legs, tapping his upper lip,

and holding his breath. It then escalates to him, gouging his upper lip,

screaming and being beet red in the face, eyes bloodshot, blood splattered

everywhere and basically out of control We are working with a behaviorist that

comes to the house once a week, and has worked up a behavior plan, that does

include physical restraint to stop from hurting himself. Last night I

was straddling holding his arms down, (and he had been given 0.5 ml/ = 2

mg per ml of Ativan), and this went on for 3 hours. The Ativan is not helping

and sometimes causes him to vomit. has been vomiting more anyway

without the med. He has a large hiatal hernia from a month of vomiting 3 years

ago

before his gallbladder was removed. A month ago, after a extremely huge BM,

which I had to help him do with a suppository, he was wonderful. He was

happy, smiling, laughing, more interactive. His bowels have been moving since,

although not everyday (they never have). has delayed gastric emptying.

These outbursts are getting more and more serious with injuries to himself.

His last dental checkups have been great, so we know it's not a problem

there, he doesn't have any active ear infections, but I think there are a few

things we need to look at and get it done with one sedation/anesthesia. 1. Look

at his head and abdomen with MRI 2. Get an EEG for seizure activity.

doesn't cooperate with medical procedures. is 24 years old, weighs

82

pounds, non-verbal. We also recently discovered during an eye exam he has

the start of a cataract in his left eye. has these features of CHARGE.

H=sub-aortic stenosis (very mild) R=retardation of growth and development

G=genital hypoplasia E= ear anomalies (classic CHARGE ear). Past history of

apnea/bradycardia, frontal lobe seizures. He is extremely tactile defensive

and has autistic like behaviors. I just don't know what to do. I emailed his

behaviorist this morning describing last nights events. We have tried in the

past Resperdol, Klonopin, Reglan, Ativan, Depakote, Zyprexa, Zoloft.

Problem with giving meds is that if it's not an obvious side effect I don't

know if

he's having problems with it, due to being non-verbal and extremely limited

in communication period. has not went thru puberty and looks like he's

still about 13. He's 5'2 " . I am a single mom, and work as his primary staff

person thru a Medicaid Waiver for Developmental Disabilities. I also care

for my aunt is lives with us and is 94, with dementia, and Parkinson's

disease. I am desperate at this point to get help to stop the lip gouging

and

he also bites his wrists. There is the potential for serious injury to

himself. Sorry this is so long, I hoped I explained it well enough. Thank you

for any help I can get.

Crickmore - Mom to ph Bolinger 24 yr. old cHaRGE'r

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

, that must be incredibly hard to deal with, I can't imagine. Is

ph on anything for constipation? Kennedy is on PEG, which is Miralax in

the US - it seems to help quite a bit with a lot of the kids. Constipation

pain is terrible - maybe that would help if he got mor regular. Hope you

get some help~!

Hugs,

>

> I don't post much, but my son ph is going thru some serious SIB

> behaviors, that I have not been able to get a handle on. I am fighting

> with doctors

> to get some medical issues ruled out, especially of his abdomen (chronic

> constipation, we are working on). The main problem is his doctor left in

> June and

> all we have seen is temporary doctors while they search for a regular one

> to

> replace his former. The SIB behavior that is causing the concern is

> gouging

> his upper lip until it is bleeding. Let me describe the set up to the

> behavior.

> It starts with wildly flaying his arms and legs, tapping his upper

> lip,

> and holding his breath. It then escalates to him, gouging his upper lip,

> screaming and being beet red in the face, eyes bloodshot, blood splattered

>

> everywhere and basically out of control We are working with a behaviorist

> that

> comes to the house once a week, and has worked up a behavior plan, that

> does

> include physical restraint to stop from hurting himself. Last night I

>

> was straddling holding his arms down, (and he had been given 0.5 ml/

> = 2

> mg per ml of Ativan), and this went on for 3 hours. The Ativan is not

> helping

> and sometimes causes him to vomit. has been vomiting more anyway

> without the med. He has a large hiatal hernia from a month of vomiting 3

> years ago

> before his gallbladder was removed. A month ago, after a extremely huge

> BM,

> which I had to help him do with a suppository, he was wonderful. He was

> happy, smiling, laughing, more interactive. His bowels have been moving

> since,

> although not everyday (they never have). has delayed gastric

> emptying.

> These outbursts are getting more and more serious with injuries to

> himself.

> His last dental checkups have been great, so we know it's not a problem

> there, he doesn't have any active ear infections, but I think there are a

> few

> things we need to look at and get it done with one sedation/anesthesia. 1.

> Look

> at his head and abdomen with MRI 2. Get an EEG for seizure activity.

> doesn't cooperate with medical procedures. is 24 years old,

> weighs 82

> pounds, non-verbal. We also recently discovered during an eye exam he has

> the start of a cataract in his left eye. has these features of

> CHARGE.

> H=sub-aortic stenosis (very mild) R=retardation of growth and development

> G=genital hypoplasia E= ear anomalies (classic CHARGE ear). Past history

> of

> apnea/bradycardia, frontal lobe seizures. He is extremely tactile

> defensive

> and has autistic like behaviors. I just don't know what to do. I emailed

> his

> behaviorist this morning describing last nights events. We have tried in

> the

> past Resperdol, Klonopin, Reglan, Ativan, Depakote, Zyprexa, Zoloft.

> Problem with giving meds is that if it's not an obvious side effect I

> don't know if

> he's having problems with it, due to being non-verbal and extremely

> limited

> in communication period. has not went thru puberty and looks like

> he's

> still about 13. He's 5'2 " . I am a single mom, and work as his primary

> staff

> person thru a Medicaid Waiver for Developmental Disabilities. I also care

> for my aunt is lives with us and is 94, with dementia, and Parkinson's

> disease. I am desperate at this point to get help to stop the lip

> gouging and

> he also bites his wrists. There is the potential for serious injury to

> himself. Sorry this is so long, I hoped I explained it well enough. Thank

> you

> for any help I can get.

> Crickmore - Mom to ph Bolinger 24 yr. old cHaRGE'r

> <BR><BR><BR>**************************************<BR> AOL now offers free

>

> email to everyone. Find out more about what's free from AOL at

> http://www.aol.com.

>

>

[Guest guest]

Oh -

I haven't taken down the precious CHARGE photos from the Holiday cards, and your

darling handsome son still smiles at me from the wall. I am so sorry and I

hope you and ph find some answers and relief soon-

love and hugs to you and -

Yuka

Re: Need Tim H./ Dr.Kim/ D. Brown to help me with violent

SIB behaviors

I don't post much, but my son ph is going thru some serious SIB

behaviors, that I have not been able to get a handle on. I am fighting with

doctors

to get some medical issues ruled out, especially of his abdomen (chronic

constipation, we are working on). The main problem is his doctor left in June

and

all we have seen is temporary doctors while they search for a regular one to

replace his former. The SIB behavior that is causing the concern is gouging

his upper lip until it is bleeding. Let me describe the set up to the

behavior.

It starts with wildly flaying his arms and legs, tapping his upper lip,

and holding his breath. It then escalates to him, gouging his upper lip,

screaming and being beet red in the face, eyes bloodshot, blood splattered

everywhere and basically out of control We are working with a behaviorist that

comes to the house once a week, and has worked up a behavior plan, that does

include physical restraint to stop from hurting himself. Last night I

was straddling holding his arms down, (and he had been given 0.5 ml/ = 2

mg per ml of Ativan), and this went on for 3 hours. The Ativan is not helping

and sometimes causes him to vomit. has been vomiting more anyway

without the med. He has a large hiatal hernia from a month of vomiting 3 years

ago

before his gallbladder was removed. A month ago, after a extremely huge BM,

which I had to help him do with a suppository, he was wonderful. He was

happy, smiling, laughing, more interactive. His bowels have been moving since,

although not everyday (they never have). has delayed gastric emptying.

These outbursts are getting more and more serious with injuries to himself.

His last dental checkups have been great, so we know it's not a problem

there, he doesn't have any active ear infections, but I think there are a few

things we need to look at and get it done with one sedation/anesthesia. 1.

Look

at his head and abdomen with MRI 2. Get an EEG for seizure activity.

doesn't cooperate with medical procedures. is 24 years old, weighs

82

pounds, non-verbal. We also recently discovered during an eye exam he has

the start of a cataract in his left eye. has these features of CHARGE.

H=sub-aortic stenosis (very mild) R=retardation of growth and development

G=genital hypoplasia E= ear anomalies (classic CHARGE ear). Past history of

apnea/bradycardia, frontal lobe seizures. He is extremely tactile defensive

and has autistic like behaviors. I just don't know what to do. I emailed his

behaviorist this morning describing last nights events. We have tried in the

past Resperdol, Klonopin, Reglan, Ativan, Depakote, Zyprexa, Zoloft.

Problem with giving meds is that if it's not an obvious side effect I don't

know if

he's having problems with it, due to being non-verbal and extremely limited

in communication period. has not went thru puberty and looks like he's

still about 13. He's 5'2 " . I am a single mom, and work as his primary staff

person thru a Medicaid Waiver for Developmental Disabilities. I also care

for my aunt is lives with us and is 94, with dementia, and Parkinson's

disease. I am desperate at this point to get help to stop the lip gouging

and

he also bites his wrists. There is the potential for serious injury to

himself. Sorry this is so long, I hoped I explained it well enough. Thank you

for any help I can get.

Crickmore - Mom to ph Bolinger 24 yr. old cHaRGE'r

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

I don't have any advice to offer but my heart aches for you and your son.

Lori Myers

Re: Need Tim H./ Dr.Kim/ D. Brown to help me with violent

SIB behaviors

I don't post much, but my son ph is going thru some serious SIB

behaviors, that I have not been able to get a handle on. I am fighting with

doctors

to get some medical issues ruled out, especially of his abdomen (chronic

constipation, we are working on). The main problem is his doctor left in June

and

all we have seen is temporary doctors while they search for a regular one to

replace his former. The SIB behavior that is causing the concern is gouging

his upper lip until it is bleeding. Let me describe the set up to the

behavior.

It starts with wildly flaying his arms and legs, tapping his upper lip,

and holding his breath. It then escalates to him, gouging his upper lip,

screaming and being beet red in the face, eyes bloodshot, blood splattered

everywhere and basically out of control We are working with a behaviorist that

comes to the house once a week, and has worked up a behavior plan, that does

include physical restraint to stop from hurting himself. Last night I

was straddling holding his arms down, (and he had been given 0.5 ml/ = 2

mg per ml of Ativan), and this went on for 3 hours. The Ativan is not helping

and sometimes causes him to vomit. has been vomiting more anyway

without the med. He has a large hiatal hernia from a month of vomiting 3 years

ago

before his gallbladder was removed. A month ago, after a extremely huge BM,

which I had to help him do with a suppository, he was wonderful. He was

happy, smiling, laughing, more interactive. His bowels have been moving since,

although not everyday (they never have). has delayed gastric emptying.

These outbursts are getting more and more serious with injuries to himself.

His last dental checkups have been great, so we know it's not a problem

there, he doesn't have any active ear infections, but I think there are a few

things we need to look at and get it done with one sedation/anesthesia. 1.

Look

at his head and abdomen with MRI 2. Get an EEG for seizure activity.

doesn't cooperate with medical procedures. is 24 years old, weighs

82

pounds, non-verbal. We also recently discovered during an eye exam he has

the start of a cataract in his left eye. has these features of CHARGE.

H=sub-aortic stenosis (very mild) R=retardation of growth and development

G=genital hypoplasia E= ear anomalies (classic CHARGE ear). Past history of

apnea/bradycardia, frontal lobe seizures. He is extremely tactile defensive

and has autistic like behaviors. I just don't know what to do. I emailed his

behaviorist this morning describing last nights events. We have tried in the

past Resperdol, Klonopin, Reglan, Ativan, Depakote, Zyprexa, Zoloft.

Problem with giving meds is that if it's not an obvious side effect I don't

know if

he's having problems with it, due to being non-verbal and extremely limited

in communication period. has not went thru puberty and looks like he's

still about 13. He's 5'2 " . I am a single mom, and work as his primary staff

person thru a Medicaid Waiver for Developmental Disabilities. I also care

for my aunt is lives with us and is 94, with dementia, and Parkinson's

disease. I am desperate at this point to get help to stop the lip gouging

and

he also bites his wrists. There is the potential for serious injury to

himself. Sorry this is so long, I hoped I explained it well enough. Thank you

for any help I can get.

Crickmore - Mom to ph Bolinger 24 yr. old cHaRGE'r

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.