self-abusive behavior

August 21, 2005

Tonya,

I have been dealing with the behavioral aspects of CHARGE for

quite some time now. My son Mark is 21 SOON to be 22. He is non verbal and is in

a special ed school in our district. It has for me been more frustrating than

the medical issues because it limits a family SO MUCH and there are no real

answers. It is try this, try that, on and on. Mark can be extremely

unpredictable too which is not easy. We have tried everything in the book and

have had

some good luck with meds recently. I am praying they work for a while. He smacks

his head, stops and kicks and he is bigger and stronger now. My CHARGE'r they

thought would not grow is 5'5 " and 155lbs! I feel for any family going

through the behavioral challenges.

August 21, 2005

Hi all - I am new to the CHARGE group. I have an 11.5 year old

daughter (Caitlin) with CHARGE. She is our adorable, determined

little red-headed ball of fire with ptosis, hearing impairment,

gastrointestinal, urinary issues and numerous developmental delays.

She has severe to profound MR and is extremely self-abusive

(bites/scratches/pinches herself, mashes her eye). Is there ANYONE out

there who has dealt with this issue? This has been going on since she

was 3 and, as you can imagine, we have tried all of the therapies

(both conventional and non-conventional), redirection, change of

scenery. Some of these things work some of the time but require

one-on-one attention which is not available all of the time such as

the times I am cooking dinner, helping another of my children with

their homework, etc. Caitlin also has behavioral issues which we have

somewhat resolved by " Caitlin-proofing " our house and constant

re-direction. Caitlin communicates with gestures and PECS. We are

currently trying Naltrexone but I don't think it is working. HELP!! I

am happy to finally have discovered this site, thanks to Meg Hefner

and Tim Hartshorne.

Tonya

August 21, 2005

Tonya-

I'm so glad you found us -- and Meg and Tim. With new CHARGE support, I

hope that your life will change -- for the better. Unfortunately (well,

fortunately for us) my daughter doesn't exhibit those CHARGE behaviors.

But there are plenty of folks here whose kids do. I'm sure they'll

chime in with any suggestions. I know it's frustrating for all who deal

with it and there don't seem to be any easy answers.

Even if you don't get concrete solutions, you will get support and find

that you are not alone. That can go a long way to making an unbearable

situation at least tolerable.

So-- welcome!

Michele W

Aubrie's mom 7 yrs CHaRgE and 13 yrs

>

August 21, 2005

Tonya,

I'm sorry I don't have much to offer in terms of tips with the behaviour; it

seems to be an ongoing and pervasive part of many of these kids' lives. Kennedy

used to pull her hair out in gobs when she was 2 and it drove me bananas but we

were lucky as she grew out of it; now, she just has some hand biting

(occasionally) and more of just an excited thing for her. I just wanted to

welcome you to the group and I look forward to hearing more about Caitlin.

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

August 21, 2005

Tonya,

There were a couple of presentations on this topic at the recent CHARGE

Foundation confrence. Understanding the cause of the behavior is one thing, is

the

behavior communication, an illness, a bilogical reason?.... It's so

complicated. I learned from Laurie Denno's presentation that they have

discovered

children who have CHARGE are often not able to be redirected.

Also medications have a different affect on our kids sometimes. Seems what

works for one doesn't for another.

Are you alone? No.

August 22, 2005

Tonya,

I have an 18 year old daughter and she is currently the queen of bad

behavior. This summer, I took off of all of her meds so that

I could get a clear picture of what I was needing to medicate for. I

also was concerned that some of the meds were creating the behaviors.

Now, with that said, Jess has always had horrible behaviors. She

started them with the terrible twos and took them to 16 years of

experience and teenage attitude. There was a 4 year period in her

life that behaviors were not an issue. They weren't gone, but not an

issue. What was different then vs. now? Well, I believe it was

educationally and at home, her needs were being met.

I'm not saying that you are not meeting her needs at home. This last

year had an educational change and she resorted back to her

horrible behaviors again, the same ones you mentioned and very

intense. This educational situation is stressing her to the point

that she is not able to cope. I believe that we are missing pieces of

the puzzle right now that makes her feel good enough to handle the

stress and cope. If I am going to look at the behavior as a form of

communication then I realized that I need to interpret this as her cry

out for help. So right now I am working on " fixing " what is stressing

her in her life and then hopefully she can get back on track to the

Jess that was happy and for the most part, not experiencing behaviors.

We have tried many medications and many combinations. Sometimes they

work and sometimes they don't. I found it interesting that you

mentioned naltraxzone because I asked about adding that to 's

meds last week but the psychiatrist said she only liked to use it for

those that severly self injure themselves. But we have left it out

there as an option.

Currently Jess is taking Luvox, Zyprexa and Seraquel. They do seem to

work and we have her on very healthy doeses of each. We have found

that normal doses don't stay therapeutic for long with Jess and we are

constantly adjusting the doses and even going over what is recommended

at times.

I would love to visit with you as I know how stressful this can be on

you and your family. It is very taxing trying to fix something that

doesn't have a quick fix.

I have been reading and writing emails for a few hours now and as

Martha says...I'm rambling.

Please feel free to email me privately or ask more questions here on

the list. Behaviors are a topic of great interest here.

Have a great day!

Sheryl

Mom to Mitch 19 & 18

> Hi all - I am new to the CHARGE group. I have an 11.5 year old

> daughter (Caitlin) with CHARGE. She is our adorable, determined

> little red-headed ball of fire with ptosis, hearing impairment,

> gastrointestinal, urinary issues and numerous developmental delays.

> She has severe to profound MR and is extremely self-abusive

> (bites/scratches/pinches herself, mashes her eye). Is there ANYONE out

> there who has dealt with this issue? This has been going on since she

> was 3 and, as you can imagine, we have tried all of the therapies

> (both conventional and non-conventional), redirection, change of

> scenery. Some of these things work some of the time but require

> one-on-one attention which is not available all of the time such as

> the times I am cooking dinner, helping another of my children with

> their homework, etc. Caitlin also has behavioral issues which we have

> somewhat resolved by " Caitlin-proofing " our house and constant

> re-direction. Caitlin communicates with gestures and PECS. We are

> currently trying Naltrexone but I don't think it is working. HELP!! I

> am happy to finally have discovered this site, thanks to Meg Hefner

> and Tim Hartshorne.

>

> Tonya

August 22, 2005

as some of the others i cant help you myuch course i dont have many

behavioural problems but i will tell you a few charge kids out here we know

of are believed to have phycosis just thought this would be helpful to you

and to otehrs to look in to tim if you out there you being at the confrence

in sydney longer than i was might like to elaborate on this thing for me but

i believe julia patterson had it and some others we know out here well im a

20 year old charger in aus with cleft palate and eyes as someone once called

it ive had and got nurmerouse tummy problems and ive got hormonal probs i

can off er you love and hugs though like all of us and thats what ill give

you now ellen from aus

>

> Tonya,

> I have an 18 year old daughter and she is currently the queen of bad

> behavior. This summer, I took off of all of her meds so that

> I could get a clear picture of what I was needing to medicate for. I

> also was concerned that some of the meds were creating the behaviors.

> Now, with that said, Jess has always had horrible behaviors. She

> started them with the terrible twos and took them to 16 years of

> experience and teenage attitude. There was a 4 year period in her

> life that behaviors were not an issue. They weren't gone, but not an

> issue. What was different then vs. now? Well, I believe it was

> educationally and at home, her needs were being met.

> I'm not saying that you are not meeting her needs at home. This last

> year had an educational change and she resorted back to her

> horrible behaviors again, the same ones you mentioned and very

> intense. This educational situation is stressing her to the point

> that she is not able to cope. I believe that we are missing pieces of

> the puzzle right now that makes her feel good enough to handle the

> stress and cope. If I am going to look at the behavior as a form of

> communication then I realized that I need to interpret this as her cry

> out for help. So right now I am working on " fixing " what is stressing

> her in her life and then hopefully she can get back on track to the

> Jess that was happy and for the most part, not experiencing behaviors.

> We have tried many medications and many combinations. Sometimes they

> work and sometimes they don't. I found it interesting that you

> mentioned naltraxzone because I asked about adding that to 's

> meds last week but the psychiatrist said she only liked to use it for

> those that severly self injure themselves. But we have left it out

> there as an option.

> Currently Jess is taking Luvox, Zyprexa and Seraquel. They do seem to

> work and we have her on very healthy doeses of each. We have found

> that normal doses don't stay therapeutic for long with Jess and we are

> constantly adjusting the doses and even going over what is recommended

> at times.

> I would love to visit with you as I know how stressful this can be on

> you and your family. It is very taxing trying to fix something that

> doesn't have a quick fix.

> I have been reading and writing emails for a few hours now and as

> Martha says...I'm rambling.

> Please feel free to email me privately or ask more questions here on

> the list. Behaviors are a topic of great interest here.

> Have a great day!

> Sheryl

> Mom to Mitch 19 & 18

>

> > Hi all - I am new to the CHARGE group. I have an 11.5 year old

> > daughter (Caitlin) with CHARGE. She is our adorable, determined

> > little red-headed ball of fire with ptosis, hearing impairment,

> > gastrointestinal, urinary issues and numerous developmental delays.

> > She has severe to profound MR and is extremely self-abusive

> > (bites/scratches/pinches herself, mashes her eye). Is there ANYONE out

> > there who has dealt with this issue? This has been going on since she

> > was 3 and, as you can imagine, we have tried all of the therapies

> > (both conventional and non-conventional), redirection, change of

> > scenery. Some of these things work some of the time but require

> > one-on-one attention which is not available all of the time such as

> > the times I am cooking dinner, helping another of my children with

> > their homework, etc. Caitlin also has behavioral issues which we have

> > somewhat resolved by " Caitlin-proofing " our house and constant

> > re-direction. Caitlin communicates with gestures and PECS. We are

> > currently trying Naltrexone but I don't think it is working. HELP!! I

> > am happy to finally have discovered this site, thanks to Meg Hefner

> > and Tim Hartshorne.

> >

> > Tonya

>

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

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling

> 1-.

>

September 7, 2005

Ellen - thanks for the input. Any little bit of information is great at this

point. Thank you most of all for the love and hugs!! Tonya Bordy

>

> as some of the others i cant help you myuch course i dont have many

> behavioural problems but i will tell you a few charge kids out here we

> know

> of are believed to have phycosis just thought this would be helpful to you

>

> and to otehrs to look in to tim if you out there you being at the

> confrence

> in sydney longer than i was might like to elaborate on this thing for me

> but

> i believe julia patterson had it and some others we know out here well im

> a

> 20 year old charger in aus with cleft palate and eyes as someone once

> called

> it ive had and got nurmerouse tummy problems and ive got hormonal probs i

> can off er you love and hugs though like all of us and thats what ill give

>

> you now ellen from aus

>

> >

> > Tonya,

> > I have an 18 year old daughter and she is currently the queen of bad

> > behavior. This summer, I took off of all of her meds so that

> > I could get a clear picture of what I was needing to medicate for. I

> > also was concerned that some of the meds were creating the behaviors.

> > Now, with that said, Jess has always had horrible behaviors. She

> > started them with the terrible twos and took them to 16 years of

> > experience and teenage attitude. There was a 4 year period in her

> > life that behaviors were not an issue. They weren't gone, but not an

> > issue. What was different then vs. now? Well, I believe it was

> > educationally and at home, her needs were being met.

> > I'm not saying that you are not meeting her needs at home. This last

> > year had an educational change and she resorted back to her

> > horrible behaviors again, the same ones you mentioned and very

> > intense. This educational situation is stressing her to the point

> > that she is not able to cope. I believe that we are missing pieces of

> > the puzzle right now that makes her feel good enough to handle the

> > stress and cope. If I am going to look at the behavior as a form of

> > communication then I realized that I need to interpret this as her cry

> > out for help. So right now I am working on " fixing " what is stressing

> > her in her life and then hopefully she can get back on track to the

> > Jess that was happy and for the most part, not experiencing behaviors.

> > We have tried many medications and many combinations. Sometimes they

> > work and sometimes they don't. I found it interesting that you

> > mentioned naltraxzone because I asked about adding that to 's

> > meds last week but the psychiatrist said she only liked to use it for

> > those that severly self injure themselves. But we have left it out

> > there as an option.

> > Currently Jess is taking Luvox, Zyprexa and Seraquel. They do seem to

> > work and we have her on very healthy doeses of each. We have found

> > that normal doses don't stay therapeutic for long with Jess and we are

> > constantly adjusting the doses and even going over what is recommended

> > at times.

> > I would love to visit with you as I know how stressful this can be on

> > you and your family. It is very taxing trying to fix something that

> > doesn't have a quick fix.

> > I have been reading and writing emails for a few hours now and as

> > Martha says...I'm rambling.

> > Please feel free to email me privately or ask more questions here on

> > the list. Behaviors are a topic of great interest here.

> > Have a great day!

> > Sheryl

> > Mom to Mitch 19 & 18

> >

> > > Hi all - I am new to the CHARGE group. I have an 11.5 year old

> > > daughter (Caitlin) with CHARGE. She is our adorable, determined

> > > little red-headed ball of fire with ptosis, hearing impairment,

> > > gastrointestinal, urinary issues and numerous developmental delays.

> > > She has severe to profound MR and is extremely self-abusive

> > > (bites/scratches/pinches herself, mashes her eye). Is there ANYONE out

> > > there who has dealt with this issue? This has been going on since she

> > > was 3 and, as you can imagine, we have tried all of the therapies

> > > (both conventional and non-conventional), redirection, change of

> > > scenery. Some of these things work some of the time but require

> > > one-on-one attention which is not available all of the time such as

> > > the times I am cooking dinner, helping another of my children with

> > > their homework, etc. Caitlin also has behavioral issues which we have

> > > somewhat resolved by " Caitlin-proofing " our house and constant

> > > re-direction. Caitlin communicates with gestures and PECS. We are

> > > currently trying Naltrexone but I don't think it is working. HELP!! I

> > > am happy to finally have discovered this site, thanks to Meg Hefner

> > > and Tim Hartshorne.

> > >

> > > Tonya

> >

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

> in

> > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

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

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome

> Canada

> > information and membership, please visit http://www.chargesyndrome.ca,or

> > email info@....

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

>

> > www.chargesyndrome.org <http://www.chargesyndrome.org> <

> http://www.chargesyndrome.org> or by calling

> > 1-.

> >

September 7, 2005

Our son n is 14yrs old. He has behavior issues also, banging his head

hard on a surface closest to him, poking his weak left eye, shoving his finger

up his nose so it bleeds (all scar tissue since correcting bilateral coanal

artrsia surgery, scar tissue bleeds easily), pulls on cuticals until they bleed

everywhere, pushes on his throat. That is just a few. We had him on Luvox for

several years and when that didn't work we switched him to Respiradol. n

takes 1/2 a pill in the AM and a whole pill in the PM, which helps him sleep

through the night. It has helped him recover from his self mutilation

behaviors. n uses sign language and pictures for communication. We have

found that most of his frustrations came from lack of being able to express and

communicate his needs and wants. He is very obsessive and if he doesn't get his

way he flips out but recovers quicker. Sometimes when he is having a bad day we

put pressure on his body.

Hope this is helpful.

Sundi

Re: Re: self-abusive behavior