RE: Help with Behavior and Communication

January 12, 2004

Welcome to the group. Have you had him seen by a specialist in Autism? He really seems to fit the profile. I have heard of many cases of mito where people have Autistic characteristics. You will probably get a lot of posts about this, there are some parents in this group with children with autistic characteristics. Good luck.

January 12, 2004

Welcome to the group. Have you had him seen by a specialist in Autism? He really seems to fit the profile. I have heard of many cases of mito where people have Autistic characteristics. You will probably get a lot of posts about this, there are some parents in this group with children with autistic characteristics. Good luck.

January 12, 2004

Welcome! The first two things that came to mind when I read your

post are autisim and Obsessive-Compulsive Disorder. Is there a

developmental pediatrician in your area? They may be able to help

you. Hang in there.

Geri-Anne and Wyatt, Complex I

> Hi all! I am new to this group, but desperately need some advice.

My

> son (almost 7) was diagnosed almost 2 years ago with a complex 1

> defect. He is my oldest of 4 children. He is completely non-

verbal,

> ambulatory with a clumbsy gate, poor fine motor skills (ie - uses

a

> raking motion with his fingers to pick things up), tube fed due to

> aspiration and failure to thrive and unexplained vomitting

(daily).

>

> He is very frustrated because he can't communicate, but makes no

> attempt to use PECS, signs, etc. We think he can't organize and

> motor plan enough to do so without hand-over-hand support. He

does

> seem to comprehend most of what we say.

>

> He spends his time at home putting his siblings in a choke-hold,

> pulling his sisters hair, wrestling them, etc. He also has gotten

> incredibly obsessed with lining up or piling everything in our

house.

> If I leave the pantry open he will empty the shelves and I'll find

a

> mound somewhere. He constantly steels the pillows off every bed

in

> the house and puts them on his brothers bunk (then goes totally

nuts

> when we try to reclaim them at bedtime). He lines the shoes up at

> the back door, our glasses at dinner, the kitchen chairs and

stools.

> I can't take it anymore. I want a peaceful house that doesn't

look

> like it has been ransacked. I love my son soooo much, but find

> myself feeling very angry at him for being so disruptive. I hate

how

> I am feeling. How can I help him?

>

> I am sorry this is so long, but as you can see, I need help! Any

> advice would be greatly appreciated.

>

> Thank you all for listening!

>

January 12, 2004

Welcome! The first two things that came to mind when I read your

post are autisim and Obsessive-Compulsive Disorder. Is there a

developmental pediatrician in your area? They may be able to help

you. Hang in there.

Geri-Anne and Wyatt, Complex I

> Hi all! I am new to this group, but desperately need some advice.

My

> son (almost 7) was diagnosed almost 2 years ago with a complex 1

> defect. He is my oldest of 4 children. He is completely non-

verbal,

> ambulatory with a clumbsy gate, poor fine motor skills (ie - uses

a

> raking motion with his fingers to pick things up), tube fed due to

> aspiration and failure to thrive and unexplained vomitting

(daily).

>

> He is very frustrated because he can't communicate, but makes no

> attempt to use PECS, signs, etc. We think he can't organize and

> motor plan enough to do so without hand-over-hand support. He

does

> seem to comprehend most of what we say.

>

> He spends his time at home putting his siblings in a choke-hold,

> pulling his sisters hair, wrestling them, etc. He also has gotten

> incredibly obsessed with lining up or piling everything in our

house.

> If I leave the pantry open he will empty the shelves and I'll find

a

> mound somewhere. He constantly steels the pillows off every bed

in

> the house and puts them on his brothers bunk (then goes totally

nuts

> when we try to reclaim them at bedtime). He lines the shoes up at

> the back door, our glasses at dinner, the kitchen chairs and

stools.

> I can't take it anymore. I want a peaceful house that doesn't

look

> like it has been ransacked. I love my son soooo much, but find

> myself feeling very angry at him for being so disruptive. I hate

how

> I am feeling. How can I help him?

>

> I am sorry this is so long, but as you can see, I need help! Any

> advice would be greatly appreciated.

>

> Thank you all for listening!

>

January 12, 2004

Welcome! The first two things that came to mind when I read your

post are autisim and Obsessive-Compulsive Disorder. Is there a

developmental pediatrician in your area? They may be able to help

you. Hang in there.

Geri-Anne and Wyatt, Complex I

> Hi all! I am new to this group, but desperately need some advice.

My

> son (almost 7) was diagnosed almost 2 years ago with a complex 1

> defect. He is my oldest of 4 children. He is completely non-

verbal,

> ambulatory with a clumbsy gate, poor fine motor skills (ie - uses

a

> raking motion with his fingers to pick things up), tube fed due to

> aspiration and failure to thrive and unexplained vomitting

(daily).

>

> He is very frustrated because he can't communicate, but makes no

> attempt to use PECS, signs, etc. We think he can't organize and

> motor plan enough to do so without hand-over-hand support. He

does

> seem to comprehend most of what we say.

>

> He spends his time at home putting his siblings in a choke-hold,

> pulling his sisters hair, wrestling them, etc. He also has gotten

> incredibly obsessed with lining up or piling everything in our

house.

> If I leave the pantry open he will empty the shelves and I'll find

a

> mound somewhere. He constantly steels the pillows off every bed

in

> the house and puts them on his brothers bunk (then goes totally

nuts

> when we try to reclaim them at bedtime). He lines the shoes up at

> the back door, our glasses at dinner, the kitchen chairs and

stools.

> I can't take it anymore. I want a peaceful house that doesn't

look

> like it has been ransacked. I love my son soooo much, but find

> myself feeling very angry at him for being so disruptive. I hate

how

> I am feeling. How can I help him?

>

> I am sorry this is so long, but as you can see, I need help! Any

> advice would be greatly appreciated.

>

> Thank you all for listening!

>

January 12, 2004

Our daughter does these things and has been diagnoses with obsessive compulsive disorder. She was diagnosed seven years ago. has trouble with frustration levels to and used to blow up. We finally got meds that have leveled her out and we have problems only when she gets to tired. The following is the med combo that works great for us. The Dr's said these meds did not work like that but for us it has been a Godsend!!!!

Elavil 5 mg in the morning and 15 mg p.m.( we had problems with any highr dose than this)

Clonidine 0.1 mg tablet 2 times a day

Carnitor liquid 1 tsp twice a day

Orap 2 mg tablets- 2 tablets two times a day.

When we were still having problems I told the Dr's that I felt like if they upped the Orap from 1 1/2 tablets 2 times a day to 2 tablets 2x a day things would be perfect. They faught me so i did it myself and it has been great!

I have walked where you are now and it is not at all fun. I thought I would never see another peaceful day.......hold on there is light at the end of that long tunnel. Just keep moving forward, searching for answers and remember Dr's are good (most of them anyway) but they dont know all so go with your mom gut and what it tells you until you get the right answers.

I am always here if you need to talk.

Blessings to you and yours,

Horsley

leehorsley@...

Re: Help with Behavior and Communication

Welcome! The first two things that came to mind when I read your post are autisim and Obsessive-Compulsive Disorder. Is there a developmental pediatrician in your area? They may be able to help you. Hang in there.Geri-Anne and Wyatt, Complex I> Hi all! I am new to this group, but desperately need some advice. My > son (almost 7) was diagnosed almost 2 years ago with a complex 1 > defect. He is my oldest of 4 children. He is completely non-verbal, > ambulatory with a clumbsy gate, poor fine motor skills (ie - uses a > raking motion with his fingers to pick things up), tube fed due to > aspiration and failure to thrive and unexplained vomitting (daily). > > He is very frustrated because he can't communicate, but makes no > attempt to use PECS, signs, etc. We think he can't organize and > motor plan enough to do so without hand-over-hand support. He does > seem to comprehend most of what we say. > > He spends his time at home putting his siblings in a choke-hold, > pulling his sisters hair, wrestling them, etc. He also has gotten > incredibly obsessed with lining up or piling everything in our house. > If I leave the pantry open he will empty the shelves and I'll find a > mound somewhere. He constantly steels the pillows off every bed in > the house and puts them on his brothers bunk (then goes totally nuts > when we try to reclaim them at bedtime). He lines the shoes up at > the back door, our glasses at dinner, the kitchen chairs and stools. > I can't take it anymore. I want a peaceful house that doesn't look > like it has been ransacked. I love my son soooo much, but find > myself feeling very angry at him for being so disruptive. I hate how > I am feeling. How can I help him?> > I am sorry this is so long, but as you can see, I need help! Any > advice would be greatly appreciated.> > Thank you all for listening!> Please contact mito-owner with any problems or questions.

January 12, 2004

Our daughter does these things and has been diagnoses with obsessive compulsive disorder. She was diagnosed seven years ago. has trouble with frustration levels to and used to blow up. We finally got meds that have leveled her out and we have problems only when she gets to tired. The following is the med combo that works great for us. The Dr's said these meds did not work like that but for us it has been a Godsend!!!!

Elavil 5 mg in the morning and 15 mg p.m.( we had problems with any highr dose than this)

Clonidine 0.1 mg tablet 2 times a day

Carnitor liquid 1 tsp twice a day

Orap 2 mg tablets- 2 tablets two times a day.

When we were still having problems I told the Dr's that I felt like if they upped the Orap from 1 1/2 tablets 2 times a day to 2 tablets 2x a day things would be perfect. They faught me so i did it myself and it has been great!

I have walked where you are now and it is not at all fun. I thought I would never see another peaceful day.......hold on there is light at the end of that long tunnel. Just keep moving forward, searching for answers and remember Dr's are good (most of them anyway) but they dont know all so go with your mom gut and what it tells you until you get the right answers.

I am always here if you need to talk.

Blessings to you and yours,

Horsley

leehorsley@...

Re: Help with Behavior and Communication

Welcome! The first two things that came to mind when I read your post are autisim and Obsessive-Compulsive Disorder. Is there a developmental pediatrician in your area? They may be able to help you. Hang in there.Geri-Anne and Wyatt, Complex I> Hi all! I am new to this group, but desperately need some advice. My > son (almost 7) was diagnosed almost 2 years ago with a complex 1 > defect. He is my oldest of 4 children. He is completely non-verbal, > ambulatory with a clumbsy gate, poor fine motor skills (ie - uses a > raking motion with his fingers to pick things up), tube fed due to > aspiration and failure to thrive and unexplained vomitting (daily). > > He is very frustrated because he can't communicate, but makes no > attempt to use PECS, signs, etc. We think he can't organize and > motor plan enough to do so without hand-over-hand support. He does > seem to comprehend most of what we say. > > He spends his time at home putting his siblings in a choke-hold, > pulling his sisters hair, wrestling them, etc. He also has gotten > incredibly obsessed with lining up or piling everything in our house. > If I leave the pantry open he will empty the shelves and I'll find a > mound somewhere. He constantly steels the pillows off every bed in > the house and puts them on his brothers bunk (then goes totally nuts > when we try to reclaim them at bedtime). He lines the shoes up at > the back door, our glasses at dinner, the kitchen chairs and stools. > I can't take it anymore. I want a peaceful house that doesn't look > like it has been ransacked. I love my son soooo much, but find > myself feeling very angry at him for being so disruptive. I hate how > I am feeling. How can I help him?> > I am sorry this is so long, but as you can see, I need help! Any > advice would be greatly appreciated.> > Thank you all for listening!> Please contact mito-owner with any problems or questions.

January 12, 2004

Our daughter does these things and has been diagnoses with obsessive compulsive disorder. She was diagnosed seven years ago. has trouble with frustration levels to and used to blow up. We finally got meds that have leveled her out and we have problems only when she gets to tired. The following is the med combo that works great for us. The Dr's said these meds did not work like that but for us it has been a Godsend!!!!

Elavil 5 mg in the morning and 15 mg p.m.( we had problems with any highr dose than this)

Clonidine 0.1 mg tablet 2 times a day

Carnitor liquid 1 tsp twice a day

Orap 2 mg tablets- 2 tablets two times a day.

When we were still having problems I told the Dr's that I felt like if they upped the Orap from 1 1/2 tablets 2 times a day to 2 tablets 2x a day things would be perfect. They faught me so i did it myself and it has been great!

I have walked where you are now and it is not at all fun. I thought I would never see another peaceful day.......hold on there is light at the end of that long tunnel. Just keep moving forward, searching for answers and remember Dr's are good (most of them anyway) but they dont know all so go with your mom gut and what it tells you until you get the right answers.

I am always here if you need to talk.

Blessings to you and yours,

Horsley

leehorsley@...

Re: Help with Behavior and Communication

Welcome! The first two things that came to mind when I read your post are autisim and Obsessive-Compulsive Disorder. Is there a developmental pediatrician in your area? They may be able to help you. Hang in there.Geri-Anne and Wyatt, Complex I> Hi all! I am new to this group, but desperately need some advice. My > son (almost 7) was diagnosed almost 2 years ago with a complex 1 > defect. He is my oldest of 4 children. He is completely non-verbal, > ambulatory with a clumbsy gate, poor fine motor skills (ie - uses a > raking motion with his fingers to pick things up), tube fed due to > aspiration and failure to thrive and unexplained vomitting (daily). > > He is very frustrated because he can't communicate, but makes no > attempt to use PECS, signs, etc. We think he can't organize and > motor plan enough to do so without hand-over-hand support. He does > seem to comprehend most of what we say. > > He spends his time at home putting his siblings in a choke-hold, > pulling his sisters hair, wrestling them, etc. He also has gotten > incredibly obsessed with lining up or piling everything in our house. > If I leave the pantry open he will empty the shelves and I'll find a > mound somewhere. He constantly steels the pillows off every bed in > the house and puts them on his brothers bunk (then goes totally nuts > when we try to reclaim them at bedtime). He lines the shoes up at > the back door, our glasses at dinner, the kitchen chairs and stools. > I can't take it anymore. I want a peaceful house that doesn't look > like it has been ransacked. I love my son soooo much, but find > myself feeling very angry at him for being so disruptive. I hate how > I am feeling. How can I help him?> > I am sorry this is so long, but as you can see, I need help! Any > advice would be greatly appreciated.> > Thank you all for listening!> Please contact mito-owner with any problems or questions.

January 12, 2004

,

You didn't say anything about your son being in school. Is he ? If he is on

homebound the school would still have to provide therpy services for him. A

Speech therapist should be able to help him with his communication skills.

PT and OT should be able to help with motor skills. I don't know where your

located but any state in the US would have to follow IDEA.

Don't be to hard on yourself about being angry, we all have those feelings.

At least I do and would have a hard time believing anyone who said they

didn't.

Take care and I hope you find some help soon.

, Mom to

Help with Behavior and Communication

> Hi all! I am new to this group, but desperately need some advice. My

> son (almost 7) was diagnosed almost 2 years ago with a complex 1

> defect. He is my oldest of 4 children. He is completely non-verbal,

> ambulatory with a clumbsy gate, poor fine motor skills (ie - uses a

> raking motion with his fingers to pick things up), tube fed due to

> aspiration and failure to thrive and unexplained vomitting (daily).

>

> He is very frustrated because he can't communicate, but makes no

> attempt to use PECS, signs, etc. We think he can't organize and

> motor plan enough to do so without hand-over-hand support. He does

> seem to comprehend most of what we say.

>

> He spends his time at home putting his siblings in a choke-hold,

> pulling his sisters hair, wrestling them, etc. He also has gotten

> incredibly obsessed with lining up or piling everything in our house.

> If I leave the pantry open he will empty the shelves and I'll find a

> mound somewhere. He constantly steels the pillows off every bed in

> the house and puts them on his brothers bunk (then goes totally nuts

> when we try to reclaim them at bedtime). He lines the shoes up at

> the back door, our glasses at dinner, the kitchen chairs and stools.

> I can't take it anymore. I want a peaceful house that doesn't look

> like it has been ransacked. I love my son soooo much, but find

> myself feeling very angry at him for being so disruptive. I hate how

> I am feeling. How can I help him?

>

> I am sorry this is so long, but as you can see, I need help! Any

> advice would be greatly appreciated.

>

> Thank you all for listening!

>

> Please contact mito-owner with any problems or questions.

>

January 12, 2004