Re: self abusive behaviors/OCD

September 8, 2005

,

You are right in that these things do show up later overall - The obsessive

tendencies, not able to redirect him and all that showed up earlier for

Dylan, even so it is not something that needed treated, just something I had

to know about him, rather than getting mad at him.

On the self-abusive behavior or " frantic states " in Dylan, I believe it is

complicated by not having the ability to describe what is going on, and then

us not being able to coach them on how to work through it. What I observe

in Dylan that is is not related to frustration at inability to communicate.

I believe it is directly related to physical happenings in the body.

Sometimes neurochemistry changes, sometimes pain, but still driven from

within.

As far as prevention, I think the most important thing is for parents to be

good observers of their children. You may not be able to control everything

that happens to them, but you can prevent something that starts out as

physical from turning into something behavioral.

For example, Dylan had a floppy airway. When he was young if he had a major

cry (such as when falling and bumping his forehead) he would have a crowing

sound, and then he would go limp. Basically his floppy airway collapsed

with the crying. But the body is wise, once that happens, then he would

breath just fine and come to. I had to stifle the impulse to have a

vigorous reaction to these spells, so he did not learn to breath hold at

will to get a response. Does that make sense?

When he gets in a throw everything in the house state, I know it means he

needs major input, and that his brain is in overdrive and can't calm down.

If I give an animated response, such as running over or yelling at him, he

laughs (many families report this), but if I quietly come and get him and

say no throwing, then put him in his crib for awhile to " get his wilds out "

then he is able to calm himself and then come back out and not throw. It is

not time-out or punishment. It is recognizing his physical need for the

input and allowing him a safe place to get it and then to calm himself.

Input from me just makes the cycle worse.

Fortunately Dylan has never progressed to the point of hurting himself by

picking and scratching (my theory is that is in direct response to serotonin

levels, but we have no way of knowing for sure). He does head bang at times

- when that happens, again I recognize it as either indication that he has a

sinus infection or that he is in a state that needs major input. I then get

out our partially deflated nobby gertie ball and we rub or hit on his head

with that, so it recognizes the need for the input, but does it in a safer

more appropriate way.

Even so, sometimes the behavior gets to a point that all of this isn't

enough. When Dylan started having tics as well, his body was clearly a

" neurological mess " . Sometimes medication is needed to help regulate the

neurochemistry, and sometimes other techniques, such as HANDLE are enough to

take care of it for then at least.

When reading this list as a parent of a young child, it is important to know

that what happens for one does not happen for all. There are common threads

that run throughout, but there are so many variations of CHARGE

characteristics that come together for the kids and families who

unfortunately have to deal with major disruptive or injurious behaviors.

Some children have a harder time with lots of surgeries and some have a

harder time with whatever the physical cause of these behaviors is. There

is a range with all things CHARGE, so we just learn as we go and deal with

whatever the impact of CHARGE is to them.

Then always note, in my mind these behaviors are not about the child being

good or bad or about the parent being a good or bad parent. It is simply

another aspect of CHARGE (although definitely harder to diagnose and treat).

Kim L

> In all the posts I've read about inappropriate/abusive behaviors, it

> seems that they have shown up later, like age 3 or so. I'm guessing

> much of it has to do with lack of ability to communicate--but I'm

> wondering a few things:

>

> How would I know if Carmen may have these in the future?

>

> If there are signs now, how I can be as proactive as possible?

>

> What percentage of CHARGE kids have these behaviors?

>

> Thanks,

>

> 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 or by calling 1-.

>

September 8, 2005

,

One of the main important things is to have a developmental pediatrician who

understands dual impairments, they can help you determine when a behavorial

issue is apparent. Also, having a O/T who specializes in sensory integration is

important, they can teach you simple things that you can do at home to help with

the sensory input issues early on so that it won't be such a big problem later.

It is important to keep an open mind and realize that wether it is bad or good

behaviour, that it is a form of communication and that its not neccessarily

related to a self stimulatory issue. There could be many reasons for these type

of behaviours, stress and pain could also be a huge factor. Ruling out any type

of underlying medical issues that would cause them pain or severe stress is

important .

Redirecting and teaching them how to comfort themselves, without resorting to

self mutilation techniques is helpful, just realize that even though it may look

odd or painful to us, that it may bring comfort to them. They could also be

saying , " Something is bad wrong, Please help me! "

Also having things in the home to keep her stimulated is also important. Bean

bags, developmetal toys that will challenge her , and providing her with

different types of therapy, such as medical massages, which helps them to relax,

will also make an impact.

The main thing is to be in tune with your daughter, watch how she reacts to

certain types of situations, how does she react to sickness, discomfort, stress,

when she is hungry, tired etc, will give you a good idea how she handles, the

day to day struggles of being dual impaired and if she is simply feeling

overwhelmed when any of these other problems arise.

Even though she is young, we really went through alot with , because she

had some severe behavioral, self mutilation issues that resulted from severe

pain and she was only 8 months old at the time when this all started. A

devopmental pediatrician was the one who finally got the neurologist to look at

the pain issue seriously. Alot of her behavior issues are now being resolved as

a result of the proper diagnosis. She no longer mutilates herself,(pulling out

her hair, clawing herself, digging into her eyes, rubbing her face almost raw)

only now she softly bumps her head a little on the left side where her neuralgia

is. Her developmental pediatrician has also said this is a result of pain.

.. I hope this helps you out a bit. Just thought you might want someones

perspective who has dealt with this problem in an infant, who had alot of

multiple pain issues going on at the same time. And dealing, battling with

differant doctors with all of their opinions on this issue.

n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

wrote:

In all the posts I've read about inappropriate/abusive behaviors, it

seems that they have shown up later, like age 3 or so. I'm guessing

much of it has to do with lack of ability to communicate--but I'm

wondering a few things:

How would I know if Carmen may have these in the future?

If there are signs now, how I can be as proactive as possible?

What percentage of CHARGE kids have these behaviors?

Thanks,

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 or by calling 1-.

September 8, 2005

My hats off to you for persisting until someone really took the time to pay

attention to what her body was saying. It is far easier for a professional

to just assume that it is " just colic " or that the mom is stressed, so the

child is stressed, and not get that there is something unique here that

needs to be paid attention to.

Kim

> ,

>

> One of the main important things is to have a developmental pediatrician who

> understands dual impairments, they can help you determine when a behavorial

> issue is apparent. Also, having a O/T who specializes in sensory integration

> is important, they can teach you simple things that you can do at home to help

> with the sensory input issues early on so that it won't be such a big problem

> later.

>

> It is important to keep an open mind and realize that wether it is bad or good

> behaviour, that it is a form of communication and that its not neccessarily

> related to a self stimulatory issue. There could be many reasons for these

> type of behaviours, stress and pain could also be a huge factor. Ruling out

> any type of underlying medical issues that would cause them pain or severe

> stress is important .

>

> Redirecting and teaching them how to comfort themselves, without resorting to

> self mutilation techniques is helpful, just realize that even though it may

> look odd or painful to us, that it may bring comfort to them. They could also

> be saying , " Something is bad wrong, Please help me! "

>

> Also having things in the home to keep her stimulated is also important. Bean

> bags, developmetal toys that will challenge her , and providing her with

> different types of therapy, such as medical massages, which helps them to

> relax, will also make an impact.

>

> The main thing is to be in tune with your daughter, watch how she reacts to

> certain types of situations, how does she react to sickness, discomfort,

> stress, when she is hungry, tired etc, will give you a good idea how she

> handles, the day to day struggles of being dual impaired and if she is simply

> feeling overwhelmed when any of these other problems arise.

>

> Even though she is young, we really went through alot with , because

> she had some severe behavioral, self mutilation issues that resulted from

> severe pain and she was only 8 months old at the time when this all started. A

> devopmental pediatrician was the one who finally got the neurologist to look

> at the pain issue seriously. Alot of her behavior issues are now being

> resolved as a result of the proper diagnosis. She no longer mutilates

> herself,(pulling out her hair, clawing herself, digging into her eyes,

> rubbing her face almost raw) only now she softly bumps her head a little on

> the left side where her neuralgia is. Her developmental pediatrician has also

> said this is a result of pain.

>

> . I hope this helps you out a bit. Just thought you might want someones

> perspective who has dealt with this problem in an infant, who had alot of

> multiple pain issues going on at the same time. And dealing, battling with

> differant doctors with all of their opinions on this issue.

>

> n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

> wrote:

> In all the posts I've read about inappropriate/abusive behaviors, it

> seems that they have shown up later, like age 3 or so. I'm guessing

> much of it has to do with lack of ability to communicate--but I'm

> wondering a few things:

>

> How would I know if Carmen may have these in the future?

>

> If there are signs now, how I can be as proactive as possible?

>

> What percentage of CHARGE kids have these behaviors?

>

> Thanks,

>

> 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 or by calling 1-.

>

September 8, 2005

Thankyou Kim,

It wan't easy, I felt that there were so many times, that she was

misunderstood. I have learned that there are some things in life that absolutely

defies all medical explanation. Some things are so complex and rare, and to have

a Dr. who is willing to look into the unknown was difficult.

I am grateful that she finally had a Dr. who saw the suffering that was going

on inside of her and not just see CHARGE.

Isn't it easier though, for them to say, this must be behavioral, rather then

delve into the vast complexities that CHARGE can bring? CHARGE is rare, and

Trigeminal Neuralgia in an infant is almost unheard of. Trying to explain

something that was happening, that I myself was not very sure about wasn't

easy.I learned that I was my daughter's " voice " and if they wasn't willing to

listen to me, then how would they ever help my daughter?

Feeling lonely, exhausted and sad was only part of it. There were times I just

wanted to scream, " I can't take this anymore! " Determination, persistance

,faith and courage was what it took to see her and me through it. I still

struggle with why she has to have it, but I feel that maybe if I tell our story

that then its not a total and complete lost cause. That perhaps from all of

this can come some greater good .

I usually don't talk about it like this, I guess I have learned to keep it all

bottled up inside, Its all so painful and personal....I hate to remember and

relive it, but then I feel like I have to tell it to help someone who might be

going through the same thing and not quite sure what to do about it.

n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

Kim Lauger wrote: