Re: Need some help for a friend (child pulling out her hair) LONG

[Guest guest]

My daughter Hope did that, but instead of pulling out her own hair she was

pulling out her little sister's. We found that is was sheer frustration at

not being able to communicate and once she was able to communicate a little

better with a combination of signing, pictures, and deciphering her

mono-syllables to figure out what she meant. Her sister's hair was so bad

with huge bald spots that I had to cut her hair super short to allow the

bald spots to grow in and let her hair blend. So last summer my then 18

month old had a Hally Barry do.

But cutting Faith's hair took away Hope's frustration outlet also. Then I

spent many days sitting with her and literally holding her hands until she

attempted to tell me what she wanted instead of throwing a fit first. It was

along summer but we made a little progress in that she attempted to tell us

more and more before she got upset. Then last fall she started a special

needs preschool and that helped with her frustration a little. But it

wasn't until this past March when we moved her into a speech intensive

preschool for hearing imparied children that she really started making leaps

and bounds.

I'm not sure if The Out of Synch Child would help your friend or not. She

might find some helpful things in there depending on how her daughter is. I

read it for my youngest who has DSI and did find some things that seemed to

describe Hope as well. That's a case where it certainly couldnt hurt.

Toni

mom to Hope and Faith

website: www.merlins-avalon.com

quilts: www.merlins-avalon.com/designs.htm

I'm Doing it, You Can Too!!

http://twells.stayinhomeandlovinit.com

[Guest guest]

I believe hair pulling is related to OCD (Obsessive Compulsive

Disorder). Is she yanking out chunks or pulling individual hairs to

form the bald spot?

Trichotillomania is what it is called when it reaches the level of a

disorder. I know some children go through phases of tension

reducing behaviors that we find horrendous: head banging and hair

pulling are two that come to mind. Experts tend to say " ignore it "

and do things like cut hair short of pull back in pony tail in order

to limit access.

I don't know if I would relax like that when this child has the

underlying mitochondrial disease. It could be a calming reaction to

the frustration.

I have a good friend who does this as an adult. She has tried many

SSRIs to no avail. They actually discussed using haldol (anti

psychotic). She didn't bite. One doctor told her that a virus can

sometimes lead to an onset of OCD or trich.

I don't have much advice, I guess. Just info and sympathy.

Pam

> Hello everyone,

> My name is Robin and I have been a member here now for quite a

> while and have gained much help and advice when it comes to my 3.6

> yr.old son who has apraxia. You all have been so helpful in the

> past that I thought I would post another question only this time I

> am posting for a friend. A little background history, I have a

VERY

> CLOSE friend who has a little girl who is 2.9 years old. She was

> diagnosed with mitochondrial disease just shy of turning two. I

> know this board is mainly for apraxia but apraxia defintely fits

> into this baby's life, probably on the severe side. She only

grunts

> and crys to communicate. She is an almost 3yr old little girl

> trapped in a 1 year old's body. She is walking on her own

however,

> you can see a lot of struggle and concentration on her part.

Before

> being diagnosed with mitochondrial disease (a disease that affects

> the mitochondrial part of your body's cells, the powerhouses) she

> had gone through numerous tests and surgery to correct sever

reflux

> in which she did have a feeding tube for about 3 to 4 months.

Just

> like apraxia, the doctors can't seem to give my friend clear cut

> answers. We don't know what the future holds for her cognitively

or

> the extent of her disease (whether it is life threatening or not)

> As you all know we mothers have good and bad days with our

children

> with special needs. I just got off the phone with my friend and

she

> is very upset because her daughter is pulling out her hair to the

> extent she leaves huge bald spots. This gets me to my question.

> Those of you who have children diagnosed with severe apraxia, did

> your children do anything like this? Again, the doctors can't

tell

> her why she is doing this. Mother's instict tells us it is her

> frustration of not being able to communicate. She has up a

> communication board (on the fridge) to help her. Pictures such

as,

> drink, food, toys, etc. She is not yet finding that helpful. She

> has tried giving her a doll with long hair to pull on but she just

> throws it aside and looks at her mom. My friend has tried

ignoring

> it and not giving her attention for what she is doing. This

hasn't

> been helpful either. She will try guessing what it is she wants

and

> she throws it ALL aside. This little girl is trapped in her own

> thoughts and can not express them.

> She does go to OT, PT, and ST weekly (not sure of her schedule but

I

> know she has something daily, even on Sat. mornings with EI) Has

> any of your children experienced this level of frustration? If

it's

> not frustration and purley a sensory issue, any suggestions on

> helping her stop pulling out her hair? Again, ANY help would be

> greatly appreciated. I hate talking to my friend and I don't have

> advice or know what to say to her. She says she's so frustrated

> with this problem that she finds herself taking it out on her 4

yr.

> old son and constantly in a power struggle with him.

> Thank you for taking the time to read this and any suggestions you

> may have will definetly be passed on.

> Another quick question, do you think it would benefit her to read

> the " Out of sync child " book? I personally have not read it so I

> wasn't sure.

> Much Thanks,

> Robin

[Guest guest]

Pam did your friend use Luvox? I've seen great success with that in both

children and adults.

~k

[Guest guest]

Hi, Robin -

Josh has/had severe apraxia but did not do any of the self-abusive

behaviors. He took out his frustrations on other kids - hitting them for no

apparent reason but, we believe, out of frustration at not being able to

communicate. His OT also suggested that the hitting was a sensory thing - he

needed the sensory input of touching someone else in order to focus on what he

was doing at the moment (maybe sometimes, like walking down the hall in school,

but not all the time I don't think). The " Out of Sync Child " is a wonderful

book and I highly recommend it. There is a sequel, if you will, that talks

abouts and gives a lot of suggestions for activities for the " out of sync child "

- also very helpful. Has your friend sought out a behaviorist or a child

psychologist? What about a play therapist - it might provide a different outlet

for her daughter than self-abusive actions. Just a couple of thoughts. Good

luck to her, and to you for being there for her support.

Sherry

rlill2003 <slill@...> wrote:

Hello everyone,

My name is Robin and I have been a member here now for quite a

while and have gained much help and advice when it comes to my 3.6

yr.old son who has apraxia. You all have been so helpful in the

past that I thought I would post another question only this time I

am posting for a friend. A little background history, I have a VERY

CLOSE friend who has a little girl who is 2.9 years old. She was

diagnosed with mitochondrial disease just shy of turning two. I

know this board is mainly for apraxia but apraxia defintely fits

into this baby's life, probably on the severe side. She only grunts

and crys to communicate. She is an almost 3yr old little girl

trapped in a 1 year old's body. She is walking on her own however,

you can see a lot of struggle and concentration on her part. Before

being diagnosed with mitochondrial disease (a disease that affects

the mitochondrial part of your body's cells, the powerhouses) she

had gone through numerous tests and surgery to correct sever reflux

in which she did have a feeding tube for about 3 to 4 months. Just

like apraxia, the doctors can't seem to give my friend clear cut

answers. We don't know what the future holds for her cognitively or

the extent of her disease (whether it is life threatening or not)

As you all know we mothers have good and bad days with our children

with special needs. I just got off the phone with my friend and she

is very upset because her daughter is pulling out her hair to the

extent she leaves huge bald spots. This gets me to my question.

Those of you who have children diagnosed with severe apraxia, did

your children do anything like this? Again, the doctors can't tell

her why she is doing this. Mother's instict tells us it is her

frustration of not being able to communicate. She has up a

communication board (on the fridge) to help her. Pictures such as,

drink, food, toys, etc. She is not yet finding that helpful. She

has tried giving her a doll with long hair to pull on but she just

throws it aside and looks at her mom. My friend has tried ignoring

it and not giving her attention for what she is doing. This hasn't

been helpful either. She will try guessing what it is she wants and

she throws it ALL aside. This little girl is trapped in her own

thoughts and can not express them.

She does go to OT, PT, and ST weekly (not sure of her schedule but I

know she has something daily, even on Sat. mornings with EI) Has

any of your children experienced this level of frustration? If it's

not frustration and purley a sensory issue, any suggestions on

helping her stop pulling out her hair? Again, ANY help would be

greatly appreciated. I hate talking to my friend and I don't have

advice or know what to say to her. She says she's so frustrated

with this problem that she finds herself taking it out on her 4 yr.

old son and constantly in a power struggle with him.

Thank you for taking the time to read this and any suggestions you

may have will definetly be passed on.

Another quick question, do you think it would benefit her to read

the " Out of sync child " book? I personally have not read it so I

wasn't sure.

Much Thanks,

Robin

[Guest guest]

She just started them this week! Thank you for the suggestion.

I'll let her know what you said. She is also in the process of

moving to a new home. Her dh is working mandatory 'turn around'

which means he isn't home much at all during this stressful move.

Three kids under age 8. Anyone would pull their hair under these

circumstances!

I hope this works for her.

Pam

> Pam did your friend use Luvox? I've seen great success with that

in both children and adults.

>

> ~k