Re: Could I have Mito, too?

[Guest guest]

Hi Bec :-)

In this crazy world of mito, anything is a possibility!!! Lord

knows there are more than a few of us moms that have been dx'd or are suspected

of having it since our kids were diagnosed. My personal opinion is

that its worthy of being checked into when mom is presenting with atypical

issues, whatever they might be.

Personally, I considered myself pretty much healthy as a horse, with

not even as much as a mild allergy or anything else going on. Yeah,

I was kind of a weakling growing up, and not very athletic, had lots of

leg aches, but otherwise, was about as run of the mill as you can get.

Didn't start having problems till April of last year, and even then it

was all kind of odd issues......Psoriasis, then Psoriatic Arthritis, then

my legs swelled up and one lung partially collapsed, then liver enzymes

elevated, and then in August I finally saw a rheumatologist who was totally

baffled and sent me to the ER because he was very concerned about all of

it. I was NOT feeling that bad!! I did go though, and it was

there that they discovered my muscle enzymes were very elevated, and admitted

me for what turned into a 2 week stay. Muscle biospy was done on

day three and on day five the dx'd me with an inflammatory myopathy (Polymyositis

or Dermatomyositis) and started on high doses of prednisone. Then

had some heart issues, abnormal exercise testing, and appear to be dealing

with some neuropathy now. I got much sicker after my diagnosis and

hospital stay and was pretty much unable to do much of anything from September

till January when I finally started to get better. The mito docs

all already thought we had maternal inheritance happening due to my sisters

and brothers issues (and a maternal aunt that passed away at 2 weeks old

due to "undersized heart and lungs" even though she was full term), and

then two of my three kids having issues, but they are all now saying they

think my stuff is mito, as well as the stuff now happening with my youngest

too and it makes the maternal inheritance even more likely. So things

can certainly take interesting turns....wouldn't have even suspected I

had a problem and then boom.

All this to say, yes, its possible and probably something to seriously

consider when Spencer gets a confirmed diagnosis (or before if you can

get your docs to listen to you!!).

BIG hugs,

Kass

rebecpeck wrote:

I have a call into the Doc that performed

Spencers ERG to ask the

same questions. But I wanted to know the thoughts from the

REAL

experts, people living with the disorders.

Severe muscle cramps since a very small girl; legs, back, and neck

mostly. Only 3 years ago, I was dxed with a severe milk allergy.

When I avoid milk, I don't experience the muscle cramps.

Migraines since I was a pre-teen. Turns out these too were

attributed to allergies. When I avoid many things, I have

only 2 or

3 migraines a month. If I don't, I have near daily migraines.

The

oddest sensitivity of all is to paper. If my body comes into

contact

with wet paper for 5 - 10 minutes, I have a 4 day migraine.

I cannot

eat food that has been laying on paper. Many foods are packaged

with

paper. Yes, I can use toilet tissue and kleenex bc these

have

limited exposure. Many drugs have "cellulose" as an ingredient

normally used as a filler.

Fatigue again attributed to allergies. I don't require a daily

nap

if I avoid the foods that bother me. If I don't, I need a

2 - 3 hour

nap.

Gastrointestinal problems again attributed to allergies. It

was

thought at one point I had Celiac Disease and milk allergy.

However,

I can now eat wheat without diarreah. At one point, I could

not eat

a cookie without extreme cramping and the runs.

Heat and cold sensitivity. It needs to be 80+ degrees for

me to feel

comfortable while the rest of the world is hot. I get migraines

from

getting too hot.

Digestive enzyme difficencies. I avoid the following due to

protein

allergy milk, soy, corn, pork, and beef. At one point, I

laughingly

told the Allergy Doc that it appeared I didn't digest proteins

well.

Both of my sons also have a protein digestion issue.

At one point, I was dxed with mal absorbtion due to "Leaky Gut"

Syndrome caused by Ibuprophen overuse. At that point, there

were 25

foods I couldn't eat because I would have one reaction or another.

I don't have any of the extreme symptoms my son has. I am

able walk,

talk, function, etc. I do pretty well as long as I avoid

certain

foods. The heat/cold sensitivity is always there. The

migraines and

fatigue are always lurking.

Thanks for your input.

Bec

Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Bec :-)

In this crazy world of mito, anything is a possibility!!! Lord

knows there are more than a few of us moms that have been dx'd or are suspected

of having it since our kids were diagnosed. My personal opinion is

that its worthy of being checked into when mom is presenting with atypical

issues, whatever they might be.

Personally, I considered myself pretty much healthy as a horse, with

not even as much as a mild allergy or anything else going on. Yeah,

I was kind of a weakling growing up, and not very athletic, had lots of

leg aches, but otherwise, was about as run of the mill as you can get.

Didn't start having problems till April of last year, and even then it

was all kind of odd issues......Psoriasis, then Psoriatic Arthritis, then

my legs swelled up and one lung partially collapsed, then liver enzymes

elevated, and then in August I finally saw a rheumatologist who was totally

baffled and sent me to the ER because he was very concerned about all of

it. I was NOT feeling that bad!! I did go though, and it was

there that they discovered my muscle enzymes were very elevated, and admitted

me for what turned into a 2 week stay. Muscle biospy was done on

day three and on day five the dx'd me with an inflammatory myopathy (Polymyositis

or Dermatomyositis) and started on high doses of prednisone. Then

had some heart issues, abnormal exercise testing, and appear to be dealing

with some neuropathy now. I got much sicker after my diagnosis and

hospital stay and was pretty much unable to do much of anything from September

till January when I finally started to get better. The mito docs

all already thought we had maternal inheritance happening due to my sisters

and brothers issues (and a maternal aunt that passed away at 2 weeks old

due to "undersized heart and lungs" even though she was full term), and

then two of my three kids having issues, but they are all now saying they

think my stuff is mito, as well as the stuff now happening with my youngest

too and it makes the maternal inheritance even more likely. So things

can certainly take interesting turns....wouldn't have even suspected I

had a problem and then boom.

All this to say, yes, its possible and probably something to seriously

consider when Spencer gets a confirmed diagnosis (or before if you can

get your docs to listen to you!!).

BIG hugs,

Kass

rebecpeck wrote:

I have a call into the Doc that performed

Spencers ERG to ask the

same questions. But I wanted to know the thoughts from the

REAL

experts, people living with the disorders.

Severe muscle cramps since a very small girl; legs, back, and neck

mostly. Only 3 years ago, I was dxed with a severe milk allergy.

When I avoid milk, I don't experience the muscle cramps.

Migraines since I was a pre-teen. Turns out these too were

attributed to allergies. When I avoid many things, I have

only 2 or

3 migraines a month. If I don't, I have near daily migraines.

The

oddest sensitivity of all is to paper. If my body comes into

contact

with wet paper for 5 - 10 minutes, I have a 4 day migraine.

I cannot

eat food that has been laying on paper. Many foods are packaged

with

paper. Yes, I can use toilet tissue and kleenex bc these

have

limited exposure. Many drugs have "cellulose" as an ingredient

normally used as a filler.

Fatigue again attributed to allergies. I don't require a daily

nap

if I avoid the foods that bother me. If I don't, I need a

2 - 3 hour

nap.

Gastrointestinal problems again attributed to allergies. It

was

thought at one point I had Celiac Disease and milk allergy.

However,

I can now eat wheat without diarreah. At one point, I could

not eat

a cookie without extreme cramping and the runs.

Heat and cold sensitivity. It needs to be 80+ degrees for

me to feel

comfortable while the rest of the world is hot. I get migraines

from

getting too hot.

Digestive enzyme difficencies. I avoid the following due to

protein

allergy milk, soy, corn, pork, and beef. At one point, I

laughingly

told the Allergy Doc that it appeared I didn't digest proteins

well.

Both of my sons also have a protein digestion issue.

At one point, I was dxed with mal absorbtion due to "Leaky Gut"

Syndrome caused by Ibuprophen overuse. At that point, there

were 25

foods I couldn't eat because I would have one reaction or another.

I don't have any of the extreme symptoms my son has. I am

able walk,

talk, function, etc. I do pretty well as long as I avoid

certain

foods. The heat/cold sensitivity is always there. The

migraines and

fatigue are always lurking.

Thanks for your input.

Bec

Please contact mito-owner with any problems or questions.

[Guest guest]

Kass,

Thanks for the response. Wow, your year has been a whirlwind!

I talked about the rest of the family to the Doc that performed the

ERG on Spencer. She stated it would definitaly be beneficial to have

the entire family tested starting with me. She wants to test us all

partically because of the suspicious nature surrounding our family

ailments, albiet minor at this point for the 3 older Pecks. However,

the hospital Administration has pulled the plug on all adult

testing. We could however, test Trevor because he presents with a

few symptoms. If his came back abnormal, it should give enough

evidence to needing to test and I.

I don't think I would have a problem getting the Dev Ped to order the

test for Trevor. Need to make sure the Insurance covers it. I

intend on calling the Patient Advocate to discuss the need for at

least my testing since there isn't another lab like this for several

states. The adults are out of luck.

I don't have my list of mito diseases in front of me. Please excuse

my ignorance in my questions since I am new at this. Is the

Inflammatory Myopathy also degenerative? Do they think your youngest

has the same? Is it a deal of dx the child, dx the parent? or visa-

versa? Or is it possible the mother and child could have 2 separate

dxs? You mentioned that your heart and liver are currently

involved. Has the Prednisone helped? What is your prognosis?

Other than my allergies and working to avoid things, I am in pretty

good help. But I can see that situation can go south fairly quickly,

as in your case.

Thanks for your frankness and patience with my questions.

Bec

[Guest guest]

Kass,

This Doc in NY they are sending your muscle biopsy to for enzyme

testing. I just spoke to Spencers Doc today. They FOUND (yeah!!)

his lost biopsy. It is a frozen specimen but they found it none the

less. I found out they looked at it but didn't do the enzyme test.

The Doc is sending it off for that test.

Doc Soden said she is pretty happy it will take a few weeks before we

go to Atlanta since she wants the NY results before the trip east.

I was dxed with an autoimmune disorder 2 months prior to getting

pregnant with Spencer; leaky gut syndrome. I overused Iboprophen for

my migraines. The Ibuprophen degraded my intestional tract to the

point it was only 1/4th the width of normal. Thus, allowing all

kinds of unwonderful things through into my body. I asked at the

time what my condition would do to my unborn baby. They said he

should be fine since I was eating so well... I have always wondered

if my condition contributed to Spencers, not caused it, contributed

to it.

The Nutitionist I worked with talked about the importance of gut

health. In a nut, you are as healthy as your intestional tract.

Your tracts mission is to filter out the bad stuff and let in the

good stuff. If it isn't doing it's job, your immune system will

attack the body manifesting all kinds of interesting reactions. All

mine were considered allergic in nature.

Interesting that the autoimmune piece is considered a leading

presenter in adults. Even more interesting here, my SIL has

Reumatoid Arthritis which is also considered an autoimmune disease.

s Dad has Parkinsons disease. This puts the gene on both sides

of the house.

Thanks you for sharing your story. As I have been reading more and

more on the site, I am finding myself. Really a situation of dx the

child, dx the parent deal. I have felt like an oddity for some

time. My SIL even lovingly called me a Medical Anomily one day. =)

It actually kind of fits. I do find that when I avoid various foods

I feel better. I do find the deal scary.

Trev overheard a conversation with the ERG Doc today where I was

discussing wanting the entire family tested bc of my concerns. Then

we discussed the hospital only tests the kids. He overheard my

talking about getting HIM tested. It scared him that he has what

Spencer has. He really did some anger acting out today.

Trevor is normally a very loving sweet little boy. and I have

noticed more frequently over the last several weeks that Trevor is

becoming increasingly angry. He kicked the cat, raised his fist to

me, threw a tow at the neighbors Pit Bull dog. (Casey just ran away

from him. She loves Trevor bc Trev is her kids best buddie.

However, dogs will defend themselves if provoked.)

Today, he put a toy in Spencers mouth, then used another toy to push

the first toy in further towards the back of his throat. Luckily, I

caught him in time to stop him before we had a serious situation on

our hands. I take this as a real cry for help. I asked him to draw

a picture of his family. He was very mad and didn't want to do it.

Finally, he did. He drew a picture of everyone but Spencer. He

wants Spencer out of the picture, literally.

I am calling the Psychologist tomorrow. I knew I needed to do this

but have been putting it off bc we have had so many other things

happening. I need to get help for Trevor. I need to protect Spencer.

This is NOT Trevor behavior. I asked Trevor to tell me what makes

him mad. He is only 5 yo but he told me lots. It is unfair that

Spencer goes to bed after he does. We give Spencer his last bottle

after Trevor goes to bed. Looks like I need to give him his last

bottle just before they BOTH go to bed.

He is mad at how much time I spend researching on the computer. That

is why I am here now at 11:30 pm so I can do my stuff and get off in

the morning.

He is mad that I spend a great deal of time on the phone. He is mad

that I talk about Spencer way more than I talk about him. It is

unfair that Spencer has a disease that makes Trevor have to go get a

test. He is scared that he may have the same disease that Spencer

has.

I need to be more careful about when and where I have my

conversations. Trevor is soaking up everything I say. He isn't

getting an outlet for his fears and angers. It is coming out

sideways. I need to impress on him that shoving toys in his brothers

mouth is not an acceptable way to vent his anger. But I want to be

careful not to set off a World War with him blaming even more on his

brother.

What a mess. I told tonight that I was going to call the

Counselor tomorrow. He started to say, " I am really not... "

(interested was the next word in line.) I interrupted to say, " It

isn't optional. Trevor needs help. We need help. Trevor is asking

for help. "

Thanks for the ear.

Bec

[Guest guest]

KASS!

Fabulous response to this question!

You lucky dog cornering Kelley!!!! I was too ill during the ask the doctor section to go up to him. When I talked to him on the phone recently, he insisted on a number of tests to be run by my GP prior to seeing the neurogeneticist...including Epstein-Barr (which I had a full blown case of in 1992), Rheumatoid Arthritis, Lupus and Lyme. All came back negative. He was also the one to push the adrenal gland tumor test, although that also came back normal. Dr. Sirrs is the only doctor I saw in the "ask the doc" portion....(I was dissapointed in speaking with her, but that's another story) told me that I should have the Adrenal Tumor workup two more times, as it won't get "caught" unless I am "spiking".

My BP is still out of control and my migraines are so bad that I am popping Zomig like M & Ms. I've lost three more pounds (grand total 12-13 lb loss) and I feel like "crap" but hope to get some testing started next week when I see the neurogeneticist.

I did not realize how similar our symptoms were until I read this email carefully. My neurological symptoms are becoming more apparent. My vision issue is just the nystagmus at this point. I am wondering if you also have myclonic seizures at night. I have them rarely but they are pretty frightening when they occur. And oh yeah, my right eyelid flutters constantly....

To all others, get tested if you think you have symptoms. I didn't not take my symptoms seriously or put them together until (1) I learned more about mito and mito in adults and (2) they got so bad that I felt something was "really wrong with me......" Problem is...adult mito docs are hard to find!!!

Carol

[Guest guest]

KASS!

Fabulous response to this question!

You lucky dog cornering Kelley!!!! I was too ill during the ask the doctor section to go up to him. When I talked to him on the phone recently, he insisted on a number of tests to be run by my GP prior to seeing the neurogeneticist...including Epstein-Barr (which I had a full blown case of in 1992), Rheumatoid Arthritis, Lupus and Lyme. All came back negative. He was also the one to push the adrenal gland tumor test, although that also came back normal. Dr. Sirrs is the only doctor I saw in the "ask the doc" portion....(I was dissapointed in speaking with her, but that's another story) told me that I should have the Adrenal Tumor workup two more times, as it won't get "caught" unless I am "spiking".

My BP is still out of control and my migraines are so bad that I am popping Zomig like M & Ms. I've lost three more pounds (grand total 12-13 lb loss) and I feel like "crap" but hope to get some testing started next week when I see the neurogeneticist.

I did not realize how similar our symptoms were until I read this email carefully. My neurological symptoms are becoming more apparent. My vision issue is just the nystagmus at this point. I am wondering if you also have myclonic seizures at night. I have them rarely but they are pretty frightening when they occur. And oh yeah, my right eyelid flutters constantly....

To all others, get tested if you think you have symptoms. I didn't not take my symptoms seriously or put them together until (1) I learned more about mito and mito in adults and (2) they got so bad that I felt something was "really wrong with me......" Problem is...adult mito docs are hard to find!!!

Carol

[Guest guest]

KASS!

Fabulous response to this question!

You lucky dog cornering Kelley!!!! I was too ill during the ask the doctor section to go up to him. When I talked to him on the phone recently, he insisted on a number of tests to be run by my GP prior to seeing the neurogeneticist...including Epstein-Barr (which I had a full blown case of in 1992), Rheumatoid Arthritis, Lupus and Lyme. All came back negative. He was also the one to push the adrenal gland tumor test, although that also came back normal. Dr. Sirrs is the only doctor I saw in the "ask the doc" portion....(I was dissapointed in speaking with her, but that's another story) told me that I should have the Adrenal Tumor workup two more times, as it won't get "caught" unless I am "spiking".

My BP is still out of control and my migraines are so bad that I am popping Zomig like M & Ms. I've lost three more pounds (grand total 12-13 lb loss) and I feel like "crap" but hope to get some testing started next week when I see the neurogeneticist.

I did not realize how similar our symptoms were until I read this email carefully. My neurological symptoms are becoming more apparent. My vision issue is just the nystagmus at this point. I am wondering if you also have myclonic seizures at night. I have them rarely but they are pretty frightening when they occur. And oh yeah, my right eyelid flutters constantly....

To all others, get tested if you think you have symptoms. I didn't not take my symptoms seriously or put them together until (1) I learned more about mito and mito in adults and (2) they got so bad that I felt something was "really wrong with me......" Problem is...adult mito docs are hard to find!!!

Carol

[Guest guest]

Bec:

You are wise in getting a pscychologist for Trevor. It is amazing what kids

will pick up. When our daughter Leah was a baby we all thought we were just

dealing with a cleft palate issue. , our oldest, was 5 1/2 at the time

and was doing things in a whiney way, and having difficulties. We thought it

was starting kindergarten. Well after much talk several times, he finally

said, IT'S LEAH!!!! So we now what he was trying to deal with as a little

boy. We were gone every 6 weeks to the doctors for her and staying over

night some times because of the appointments and then her surgeries. So we

realized we must spend individual time with each of our boys. It is much

better now. is 9 and is 6. We do get a sitter just for Leah

to spend time with the boys. They do grow up very quickly with a special

needs sibling. We have a group here called Sib Shops. They spend time with

other siblings who have a sibling with special needs. It helps them out to

be with other kids who are in the " same " boat as they are. But we did have

talk to a professional when he was 8 years old because of other

issues. We found out he was holding on to his feelings way too long and they

would eventually come out in a way we didn't like. It is neat as a parent

that you recognize Trevor needs help and why. Remember, even kids who have

siblings that are " average " act out because the baby is getting too much

attention. But our attention is being drawn in a different way. It is hard

at first to leave one child with another sitter while you go out. Do you get

any respite money? We do for Leah. Around $400 a year. Our baby-sitter

just turned 18, so we can now use her for respite for Leah and I can do

things with the boys. That money does come in handy. Leah doesn't have as

many issues as some of the other kids on this site. But she is 4 years old

and can't sit up, crawl, is nonverbal, etc. But she doesn't have seizures

and things medically like that. So I'm lucky my sitter feels comfortable

being with her and does take her to the park to play with her and have her go

down the slide. Take your time with Trevor. You were smart to have him draw

a picture. Very wise of you. Don't feel bad that he is seeing someone. You

would be a mazed how they work with children and you know, it gives you a

break trying to figure out what is wrong and how to do it. Good luck with

Trevor in this area. You are going in the right direction, because not only

will it help Trevor, but you as a family. We've been there and are still

there. We took our second boy to the psychologist because of anger issues.

We aren't afraid to do that now. And they talk and the children responded

better to Dr. Cummings than to us as a parent. It was worth every penny

(even though insurance did cover most of it). Good luck and if you can, let

us know how it went and how Trevor is doing.

N. mom to Leah and and .

rebecpeck wrote:

> Kass,

>

> This Doc in NY they are sending your muscle biopsy to for enzyme

> testing. I just spoke to Spencers Doc today. They FOUND (yeah!!)

> his lost biopsy. It is a frozen specimen but they found it none the

> less. I found out they looked at it but didn't do the enzyme test.

> The Doc is sending it off for that test.

>

> Doc Soden said she is pretty happy it will take a few weeks before we

> go to Atlanta since she wants the NY results before the trip east.

>

> I was dxed with an autoimmune disorder 2 months prior to getting

> pregnant with Spencer; leaky gut syndrome. I overused Iboprophen for

> my migraines. The Ibuprophen degraded my intestional tract to the

> point it was only 1/4th the width of normal. Thus, allowing all

> kinds of unwonderful things through into my body. I asked at the

> time what my condition would do to my unborn baby. They said he

> should be fine since I was eating so well... I have always wondered

> if my condition contributed to Spencers, not caused it, contributed

> to it.

>

> The Nutitionist I worked with talked about the importance of gut

> health. In a nut, you are as healthy as your intestional tract.

> Your tracts mission is to filter out the bad stuff and let in the

> good stuff. If it isn't doing it's job, your immune system will

> attack the body manifesting all kinds of interesting reactions. All

> mine were considered allergic in nature.

>

> Interesting that the autoimmune piece is considered a leading

> presenter in adults. Even more interesting here, my SIL has

> Reumatoid Arthritis which is also considered an autoimmune disease.

> s Dad has Parkinsons disease. This puts the gene on both sides

> of the house.

>

> Thanks you for sharing your story. As I have been reading more and

> more on the site, I am finding myself. Really a situation of dx the

> child, dx the parent deal. I have felt like an oddity for some

> time. My SIL even lovingly called me a Medical Anomily one day. =)

> It actually kind of fits. I do find that when I avoid various foods

> I feel better. I do find the deal scary.

>

> Trev overheard a conversation with the ERG Doc today where I was

> discussing wanting the entire family tested bc of my concerns. Then

> we discussed the hospital only tests the kids. He overheard my

> talking about getting HIM tested. It scared him that he has what

> Spencer has. He really did some anger acting out today.

>

> Trevor is normally a very loving sweet little boy. and I have

> noticed more frequently over the last several weeks that Trevor is

> becoming increasingly angry. He kicked the cat, raised his fist to

> me, threw a tow at the neighbors Pit Bull dog. (Casey just ran away

> from him. She loves Trevor bc Trev is her kids best buddie.

> However, dogs will defend themselves if provoked.)

>

> Today, he put a toy in Spencers mouth, then used another toy to push

> the first toy in further towards the back of his throat. Luckily, I

> caught him in time to stop him before we had a serious situation on

> our hands. I take this as a real cry for help. I asked him to draw

> a picture of his family. He was very mad and didn't want to do it.

> Finally, he did. He drew a picture of everyone but Spencer. He

> wants Spencer out of the picture, literally.

>

> I am calling the Psychologist tomorrow. I knew I needed to do this

> but have been putting it off bc we have had so many other things

> happening. I need to get help for Trevor. I need to protect Spencer.

>

> This is NOT Trevor behavior. I asked Trevor to tell me what makes

> him mad. He is only 5 yo but he told me lots. It is unfair that

> Spencer goes to bed after he does. We give Spencer his last bottle

> after Trevor goes to bed. Looks like I need to give him his last

> bottle just before they BOTH go to bed.

>

> He is mad at how much time I spend researching on the computer. That

> is why I am here now at 11:30 pm so I can do my stuff and get off in

> the morning.

>

> He is mad that I spend a great deal of time on the phone. He is mad

> that I talk about Spencer way more than I talk about him. It is

> unfair that Spencer has a disease that makes Trevor have to go get a

> test. He is scared that he may have the same disease that Spencer

> has.

>

> I need to be more careful about when and where I have my

> conversations. Trevor is soaking up everything I say. He isn't

> getting an outlet for his fears and angers. It is coming out

> sideways. I need to impress on him that shoving toys in his brothers

> mouth is not an acceptable way to vent his anger. But I want to be

> careful not to set off a World War with him blaming even more on his

> brother.

>

> What a mess. I told tonight that I was going to call the

> Counselor tomorrow. He started to say, " I am really not... "

> (interested was the next word in line.) I interrupted to say, " It

> isn't optional. Trevor needs help. We need help. Trevor is asking

> for help. "

>

> Thanks for the ear.

>

> Bec

>

>

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

>

>

[Guest guest]

,

Thanks for the " atta girl " . Put a smile on my face. And to the rest

of you that have said way to go on this.

Bec

> Bec:

>

> You are wise in getting a pscychologist for Trevor. It is amazing

what kids

> will pick up. When our daughter Leah was a baby we all thought we

were just

> dealing with a cleft palate issue. , our oldest, was 5 1/2

at the time

> and was doing things in a whiney way, and having difficulties. We

thought it

> was starting kindergarten. Well after much talk several times, he

finally

> said, IT'S LEAH!!!! So we now what he was trying to deal with as a

little

> boy. We were gone every 6 weeks to the doctors for her and staying

over

> night some times because of the appointments and then her

surgeries. So we

> realized we must spend individual time with each of our boys. It

is much

> better now. is 9 and is 6. We do get a sitter just

for Leah

> to spend time with the boys. They do grow up very quickly with a

special

> needs sibling. We have a group here called Sib Shops. They spend

time with

> other siblings who have a sibling with special needs. It helps

them out to

> be with other kids who are in the " same " boat as they are. But we

did have

> talk to a professional when he was 8 years old because of

other

> issues. We found out he was holding on to his feelings way too

long and they

> would eventually come out in a way we didn't like. It is neat as a

parent

> that you recognize Trevor needs help and why. Remember, even kids

who have

> siblings that are " average " act out because the baby is getting too

much

> attention. But our attention is being drawn in a different way.

It is hard

> at first to leave one child with another sitter while you go out.

Do you get

> any respite money? We do for Leah. Around $400 a year. Our baby-

sitter

> just turned 18, so we can now use her for respite for Leah and I

can do

> things with the boys. That money does come in handy. Leah doesn't

have as

> many issues as some of the other kids on this site. But she is 4

years old

> and can't sit up, crawl, is nonverbal, etc. But she doesn't have

seizures

> and things medically like that. So I'm lucky my sitter feels

comfortable

> being with her and does take her to the park to play with her and

have her go

> down the slide. Take your time with Trevor. You were smart to

have him draw

> a picture. Very wise of you. Don't feel bad that he is seeing

someone. You

> would be a mazed how they work with children and you know, it gives

you a

> break trying to figure out what is wrong and how to do it. Good

luck with

> Trevor in this area. You are going in the right direction, because

not only

> will it help Trevor, but you as a family. We've been there and are

still

> there. We took our second boy to the psychologist because of anger

issues.

> We aren't afraid to do that now. And they talk and the children

responded

> better to Dr. Cummings than to us as a parent. It was worth every

penny

> (even though insurance did cover most of it). Good luck and if you

can, let

> us know how it went and how Trevor is doing.

>

> N. mom to Leah and and .