Re: Question regarding RSS look...Jeanie

[Guest guest]

In a message dated 2/8/2006 4:13:23 PM Central Standard Time,

awesome929@... writes:

Sometimes I think we just want to put a name with issues our children have,

such as height and weight issues. I've decided that I'm just going to accept

my son as he is and not give him a label until he has SERIOUS issues. Life

is just too short to worry about things that may never come to pass! That's

just my theory.

Just wanted to pipe in here...not trying to start a debate. I disagree with

this on some levels. Our kids will never be a label to us and to some with

very mild issues, it doesn't matter I suppose. But my child, like many

others here, have hypoglycemia and its nervewracking not having an explanation

of

why your child has this life-threatening problem. If there's an explanation

it helps to know it.

For those with kids with hypoG...with RSS it doens't change treatment but

kids with Fatty Oxidation disorders (many also have hypoG), it would make a huge

difference. Those children can die if they are not on the right kind of

diet and you don't know if you need that diet unless you have a diagnosis.

I think the yearning for a diagnosis is living in the hope that there may be

a way to fix it. I think that's why we get so determined to get one...how

do you know you can't do something about it, if you don't know what IT is.

Does that make sense? I know some see it as labeling...I see it as living in

hope.

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo, with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)

[Guest guest]

I totally agree with you on that. Sometimes hope is all you have. BUT, I have

been driving myself crazy with all the worry and " what if's " . I have found

myself sort of " waiting for the bomb to drop " . I know there are alot of people

on here that feel the same way. It's frustrating and exhausting and painful.

Like I said.........it's just MY THEORY. No one has to agree with me. LOL I

just know that, until recently, I have been OBSESSED with RSS. I eat when I'm

stressed out. I've gained 40 lbs. since Brockton was born! OUCH! I'm getting

married in July and I look terrible! For my own peace of mind, I have to let go

of this obsession and take care of myself and my son. Believe me..........I

don't, by any means, think that our childrens health issues aren't important. I

just think that if your RSS child doesn't have any of the serious issues at the

moment, you shouldn't let it get the best of you. My heart aches for those on

this site that have children with very serious

RSS related illnesses. Fortunately, Brockton doesn't have any of

them............which isn't to say that he never will. I've just decided to let

go for now and worry about those issues when they come.

Thanks for your input.

Jeanie

VisibleWorship@... wrote:

In a message dated 2/8/2006 4:13:23 PM Central Standard Time,

awesome929@... writes:

Sometimes I think we just want to put a name with issues our children have,

such as height and weight issues. I've decided that I'm just going to accept

my son as he is and not give him a label until he has SERIOUS issues. Life

is just too short to worry about things that may never come to pass! That's

just my theory.

Just wanted to pipe in here...not trying to start a debate. I disagree with

this on some levels. Our kids will never be a label to us and to some with

very mild issues, it doesn't matter I suppose. But my child, like many

others here, have hypoglycemia and its nervewracking not having an explanation

of

why your child has this life-threatening problem. If there's an explanation

it helps to know it.

For those with kids with hypoG...with RSS it doens't change treatment but

kids with Fatty Oxidation disorders (many also have hypoG), it would make a huge

difference. Those children can die if they are not on the right kind of

diet and you don't know if you need that diet unless you have a diagnosis.

I think the yearning for a diagnosis is living in the hope that there may be

a way to fix it. I think that's why we get so determined to get one...how

do you know you can't do something about it, if you don't know what IT is.

Does that make sense? I know some see it as labeling...I see it as living in

hope.

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo, with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)

[Guest guest]

Jeanie & Deb,

You both have brought up some great points! When Charissa was little and

under the RSS diagnosis I was concerned, but very calm & not fretting at all. I

did such a great job of handling the day-to-day issues of her poor eating,

constipation, feeding clinics, poor growth, PT, OT, etc. that our endo at the

time would refer new parents who were freaking out to contact me (that was

before support groups like this existed). During those early days, the only

thing I obsessed about was being a good mom and also keeping good records -

which was the best thing I could have done to prepare us for now.

I admit, I DID obsess a bit when we suddenly had no diagnosis after we saw Dr.

H. when Charissa was 15. By this time I knew that Charissa would need some

support services as an adult. We had already applied for disability services

once & been told there was not enough evidence, come back when we had more

info.....and suddenly we had LESS info! But I had the " gut instinct " that there

was something going on that had to be investigated.

So I pushed for a neurological exam - but the only doctor here who was doing

them at that time refused to evaluate her because " if something was wrong, it

would have been found by now " . Boy, was he ever wrong!

I did research to find that there was a genetics clinic here (her previous

genetics consultation had been 15 years earlier in another state) and contacted

the doctors myself to push for another genetics consultation - and they found

the chromosome deletion by using a test that had been developed less than a year

before.

And I did push our endo to order an MRI. Charissa had been treated for growth

hormone deficiency for nearly 13 years and had never had an MRI. All 4 of the

endos we had over the years (due to relocation) thought an MRI would be

" interesting but not necessary " . When the MRI that I had insisted on came back

showing multiple abnormalities of the white matter of the brain we were

immediately referred to the new neurologist in town, who turned out to be a

wonderful doctor.

I had to be persistant to get Charissa established with a good psychiatrist

and counselor to work with her on the behavioral issues. My husband thought it

was a waste of time & money when none of the medications tried helped her, and

he didn't see the counselor making much of a difference in her behavior. But

having these 2 professionals work with the neurologist and look at and

understand how her medical uniqueness and behavioral issues go together was an

important key.

All this established a new paper trail to present when applying for support

services, and it appears to be paying off. She has already been approved by

the state, and right now the SSI application is flying through in record time -

mainly because I could submit such extensive documentation with the application

that they do not have to spend time requesting additional information from the

doctors.

It is a fine line sometimes between making sure everything has been covered

and being desparate for answers. I know that there is no magic pill to " cure "

Charissa, but there are supports out there to help her live up to her maximum

potential. And as a mom, I am glad that I listened to that " gut instinct " that

told me to keep asking questions.

in Alaska

RSS-Support wrote:

Date: Wed, 8 Feb 2006 15:52:41 -0800 (PST)

From: Jeanie Kinnicutt

Subject: Re: Question regarding RSS look...Jeanie

I totally agree with you on that. Sometimes hope is all you have. BUT, I have

been driving myself crazy with all the worry and " what if's " . I have found

myself sort of " waiting for the bomb to drop " . I know there are alot of people

on here that feel the same way. It's frustrating and exhausting and painful.

Like I said.........it's just MY THEORY. No one has to agree with me. LOL I just

know that, until recently, I have been OBSESSED with RSS. I eat when I'm

stressed out. I've gained 40 lbs. since Brockton was born! OUCH! I'm getting

married in July and I look terrible! For my own peace of mind, I have to let go

of this obsession and take care of myself and my son. Believe me..........I

don't, by any means, think that our childrens health issues aren't important. I

just think that if your RSS child doesn't have any of the serious issues at the

moment, you shouldn't let it get the best of you. My heart aches for those on

this site that have children with very serious

RSS related illnesses. Fortunately, Brockton doesn't have any of

them............which isn't to say that he never will. I've just decided to let

go for now and worry about those issues when they come.

Thanks for your input.

Jeanie

VisibleWorship@... wrote:

In a message dated 2/8/2006 4:13:23 PM Central Standard Time,

awesome929@... writes:

Sometimes I think we just want to put a name with issues our children have,

such as height and weight issues. I've decided that I'm just going to accept

my son as he is and not give him a label until he has SERIOUS issues. Life

is just too short to worry about things that may never come to pass! That's

just my theory.

Just wanted to pipe in here...not trying to start a debate. I disagree with

this on some levels. Our kids will never be a label to us and to some with

very mild issues, it doesn't matter I suppose. But my child, like many

others here, have hypoglycemia and its nervewracking not having an explanation

of

why your child has this life-threatening problem. If there's an explanation

it helps to know it.

For those with kids with hypoG...with RSS it doens't change treatment but

kids with Fatty Oxidation disorders (many also have hypoG), it would make a huge

difference. Those children can die if they are not on the right kind of

diet and you don't know if you need that diet unless you have a diagnosis.

I think the yearning for a diagnosis is living in the hope that there may be

a way to fix it. I think that's why we get so determined to get one...how

do you know you can't do something about it, if you don't know what IT is.

Does that make sense? I know some see it as labeling...I see it as living in

hope.

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo, with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)

---------------------------------

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

For 2 years I have belonged to this group and seen your occasional posts.

Until today I never realized what an amazing person and mother you are. I'm

glad your hard work is paying off. Charissa is lucky to have you!

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of R

Sent: Thursday, February 09, 2006 4:55 PM

To: RSS-Support

Subject: Re: Question regarding RSS look...Jeanie

Jeanie & Deb,

You both have brought up some great points! When Charissa was little and

under the RSS diagnosis I was concerned, but very calm & not fretting at

all. I did such a great job of handling the day-to-day issues of her poor

eating, constipation, feeding clinics, poor growth, PT, OT, etc. that our

endo at the time would refer new parents who were freaking out to contact me

(that was before support groups like this existed). During those early

days, the only thing I obsessed about was being a good mom and also keeping

good records - which was the best thing I could have done to prepare us for

now.

I admit, I DID obsess a bit when we suddenly had no diagnosis after we saw

Dr. H. when Charissa was 15. By this time I knew that Charissa would need

some support services as an adult. We had already applied for disability

services once & been told there was not enough evidence, come back when we

had more info.....and suddenly we had LESS info! But I had the " gut

instinct " that there was something going on that had to be investigated.

So I pushed for a neurological exam - but the only doctor here who was

doing them at that time refused to evaluate her because " if something was

wrong, it would have been found by now " . Boy, was he ever wrong!

I did research to find that there was a genetics clinic here (her previous

genetics consultation had been 15 years earlier in another state) and

contacted the doctors myself to push for another genetics consultation - and

they found the chromosome deletion by using a test that had been developed

less than a year before.

And I did push our endo to order an MRI. Charissa had been treated for

growth hormone deficiency for nearly 13 years and had never had an MRI. All

4 of the endos we had over the years (due to relocation) thought an MRI

would be " interesting but not necessary " . When the MRI that I had insisted

on came back showing multiple abnormalities of the white matter of the brain

we were immediately referred to the new neurologist in town, who turned out

to be a wonderful doctor.

I had to be persistant to get Charissa established with a good

psychiatrist and counselor to work with her on the behavioral issues. My

husband thought it was a waste of time & money when none of the medications

tried helped her, and he didn't see the counselor making much of a

difference in her behavior. But having these 2 professionals work with the

neurologist and look at and understand how her medical uniqueness and

behavioral issues go together was an important key.

All this established a new paper trail to present when applying for

support services, and it appears to be paying off. She has already been

approved by the state, and right now the SSI application is flying through

in record time - mainly because I could submit such extensive documentation

with the application that they do not have to spend time requesting

additional information from the doctors.

It is a fine line sometimes between making sure everything has been

covered and being desparate for answers. I know that there is no magic pill

to " cure " Charissa, but there are supports out there to help her live up to

her maximum potential. And as a mom, I am glad that I listened to that " gut

instinct " that told me to keep asking questions.

in Alaska

RSS-Support wrote:

Date: Wed, 8 Feb 2006 15:52:41 -0800 (PST)

From: Jeanie Kinnicutt

Subject: Re: Question regarding RSS look...Jeanie

I totally agree with you on that. Sometimes hope is all you have. BUT, I

have been driving myself crazy with all the worry and " what if's " . I have

found myself sort of " waiting for the bomb to drop " . I know there are alot

of people on here that feel the same way. It's frustrating and exhausting

and painful. Like I said.........it's just MY THEORY. No one has to agree

with me. LOL I just know that, until recently, I have been OBSESSED with

RSS. I eat when I'm stressed out. I've gained 40 lbs. since Brockton was

born! OUCH! I'm getting married in July and I look terrible! For my own

peace of mind, I have to let go of this obsession and take care of myself

and my son. Believe me..........I don't, by any means, think that our

childrens health issues aren't important. I just think that if your RSS

child doesn't have any of the serious issues at the moment, you shouldn't

let it get the best of you. My heart aches for those on this site that have

children with ve ry serious

RSS related illnesses. Fortunately, Brockton doesn't have any of

them............which isn't to say that he never will. I've just decided to

let go for now and worry about those issues when they come.

Thanks for your input.

Jeanie

VisibleWorship@... wrote:

In a message dated 2/8/2006 4:13:23 PM Central Standard Time,

awesome929@... writes:

Sometimes I think we just want to put a name with issues our children have,

such as height and weight issues. I've decided that I'm just going to accept

my son as he is and not give him a label until he has SERIOUS issues. Life

is just too short to worry about things that may never come to pass! That's

just my theory.

Just wanted to pipe in here...not trying to start a debate. I disagree with

this on some levels. Our kids will never be a label to us and to some with

very mild issues, it doesn't matter I suppose. But my child, like many

others here, have hypoglycemia and its nervewracking not having an

explanation of

why your child has this life-threatening problem. If there's an explanation

it helps to know it.

For those with kids with hypoG...with RSS it doens't change treatment but

kids with Fatty Oxidation disorders (many also have hypoG), it would make a

huge

difference. Those children can die if they are not on the right kind of

diet and you don't know if you need that diet unless you have a diagnosis.

I think the yearning for a diagnosis is living in the hope that there may be

a way to fix it. I think that's why we get so determined to get one...how

do you know you can't do something about it, if you don't know what IT is.

Does that make sense? I know some see it as labeling...I see it as living in

hope.

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia

and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo,

with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI

problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)

---------------------------------

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

Being pretty new to this site, I don't know anyone very well, but I must say

that I think that EVERYONE here is an amazing parent! I know of some people

that wouldn't even think about searching the internet for help with issues their

children are dealing with. Some people just take what their doctors say and

never question or wonder what else they could be doing.

By the way. I took Brockton to be weighed today for the first time since he

started the Pediasure. He's gained 9 oz. in less than 3 wks.! I've been

checking his BS and it's fine. He's such a spunky monkey!!

Jeanie

Dayna Carney wrote:

For 2 years I have belonged to this group and seen your occasional posts.

Until today I never realized what an amazing person and mother you are. I'm

glad your hard work is paying off. Charissa is lucky to have you!

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of R

Sent: Thursday, February 09, 2006 4:55 PM

To: RSS-Support

Subject: Re: Question regarding RSS look...Jeanie

Jeanie & Deb,

You both have brought up some great points! When Charissa was little and

under the RSS diagnosis I was concerned, but very calm & not fretting at

all. I did such a great job of handling the day-to-day issues of her poor

eating, constipation, feeding clinics, poor growth, PT, OT, etc. that our

endo at the time would refer new parents who were freaking out to contact me

(that was before support groups like this existed). During those early

days, the only thing I obsessed about was being a good mom and also keeping

good records - which was the best thing I could have done to prepare us for

now.

I admit, I DID obsess a bit when we suddenly had no diagnosis after we saw

Dr. H. when Charissa was 15. By this time I knew that Charissa would need

some support services as an adult. We had already applied for disability

services once & been told there was not enough evidence, come back when we

had more info.....and suddenly we had LESS info! But I had the " gut

instinct " that there was something going on that had to be investigated.

So I pushed for a neurological exam - but the only doctor here who was

doing them at that time refused to evaluate her because " if something was

wrong, it would have been found by now " . Boy, was he ever wrong!

I did research to find that there was a genetics clinic here (her previous

genetics consultation had been 15 years earlier in another state) and

contacted the doctors myself to push for another genetics consultation - and

they found the chromosome deletion by using a test that had been developed

less than a year before.

And I did push our endo to order an MRI. Charissa had been treated for

growth hormone deficiency for nearly 13 years and had never had an MRI. All

4 of the endos we had over the years (due to relocation) thought an MRI

would be " interesting but not necessary " . When the MRI that I had insisted

on came back showing multiple abnormalities of the white matter of the brain

we were immediately referred to the new neurologist in town, who turned out

to be a wonderful doctor.

I had to be persistant to get Charissa established with a good

psychiatrist and counselor to work with her on the behavioral issues. My

husband thought it was a waste of time & money when none of the medications

tried helped her, and he didn't see the counselor making much of a

difference in her behavior. But having these 2 professionals work with the

neurologist and look at and understand how her medical uniqueness and

behavioral issues go together was an important key.

All this established a new paper trail to present when applying for

support services, and it appears to be paying off. She has already been

approved by the state, and right now the SSI application is flying through

in record time - mainly because I could submit such extensive documentation

with the application that they do not have to spend time requesting

additional information from the doctors.

It is a fine line sometimes between making sure everything has been

covered and being desparate for answers. I know that there is no magic pill

to " cure " Charissa, but there are supports out there to help her live up to

her maximum potential. And as a mom, I am glad that I listened to that " gut

instinct " that told me to keep asking questions.

in Alaska

RSS-Support wrote:

Date: Wed, 8 Feb 2006 15:52:41 -0800 (PST)

From: Jeanie Kinnicutt

Subject: Re: Question regarding RSS look...Jeanie

I totally agree with you on that. Sometimes hope is all you have. BUT, I

have been driving myself crazy with all the worry and " what if's " . I have

found myself sort of " waiting for the bomb to drop " . I know there are alot

of people on here that feel the same way. It's frustrating and exhausting

and painful. Like I said.........it's just MY THEORY. No one has to agree

with me. LOL I just know that, until recently, I have been OBSESSED with

RSS. I eat when I'm stressed out. I've gained 40 lbs. since Brockton was

born! OUCH! I'm getting married in July and I look terrible! For my own

peace of mind, I have to let go of this obsession and take care of myself

and my son. Believe me..........I don't, by any means, think that our

childrens health issues aren't important. I just think that if your RSS

child doesn't have any of the serious issues at the moment, you shouldn't

let it get the best of you. My heart aches for those on this site that have

children with ve ry serious

RSS related illnesses. Fortunately, Brockton doesn't have any of

them............which isn't to say that he never will. I've just decided to

let go for now and worry about those issues when they come.

Thanks for your input.

Jeanie

VisibleWorship@... wrote:

In a message dated 2/8/2006 4:13:23 PM Central Standard Time,

awesome929@... writes:

Sometimes I think we just want to put a name with issues our children have,

such as height and weight issues. I've decided that I'm just going to accept

my son as he is and not give him a label until he has SERIOUS issues. Life

is just too short to worry about things that may never come to pass! That's

just my theory.

Just wanted to pipe in here...not trying to start a debate. I disagree with

this on some levels. Our kids will never be a label to us and to some with

very mild issues, it doesn't matter I suppose. But my child, like many

others here, have hypoglycemia and its nervewracking not having an

explanation of

why your child has this life-threatening problem. If there's an explanation

it helps to know it.

For those with kids with hypoG...with RSS it doens't change treatment but

kids with Fatty Oxidation disorders (many also have hypoG), it would make a

huge

difference. Those children can die if they are not on the right kind of

diet and you don't know if you need that diet unless you have a diagnosis.

I think the yearning for a diagnosis is living in the hope that there may be

a way to fix it. I think that's why we get so determined to get one...how

do you know you can't do something about it, if you don't know what IT is.

Does that make sense? I know some see it as labeling...I see it as living in

hope.

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia

and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo,

with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI

problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)

---------------------------------

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

Aw, thanks Dayna. You made me cry! I'm really just like everyone else on this

list - alot of days I feel anything but amazing. But we get through the day,

move on to the next and keep on doing what we need to do.

in Alaska

RSS-Support wrote:

Date: Thu, 09 Feb 2006 17:07:17 -0600

From: Dayna Carney

Subject: RE: Re: Question regarding RSS look...Jeanie

For 2 years I have belonged to this group and seen your occasional posts.

Until today I never realized what an amazing person and mother you are. I'm

glad your hard work is paying off. Charissa is lucky to have you!

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of R

Sent: Thursday, February 09, 2006 4:55 PM

To: RSS-Support

Subject: Re: Question regarding RSS look...Jeanie

Jeanie & Deb,

You both have brought up some great points! When Charissa was little and

under the RSS diagnosis I was concerned, but very calm & not fretting at

all. I did such a great job of handling the day-to-day issues of her poor

eating, constipation, feeding clinics, poor growth, PT, OT, etc. that our

endo at the time would refer new parents who were freaking out to contact me

(that was before support groups like this existed). During those early

days, the only thing I obsessed about was being a good mom and also keeping

good records - which was the best thing I could have done to prepare us for

now.

I admit, I DID obsess a bit when we suddenly had no diagnosis after we saw

Dr. H. when Charissa was 15. By this time I knew that Charissa would need

some support services as an adult. We had already applied for disability

services once & been told there was not enough evidence, come back when we

had more info.....and suddenly we had LESS info! But I had the " gut

instinct " that there was something going on that had to be investigated.

So I pushed for a neurological exam - but the only doctor here who was

doing them at that time refused to evaluate her because " if something was

wrong, it would have been found by now " . Boy, was he ever wrong!

I did research to find that there was a genetics clinic here (her previous

genetics consultation had been 15 years earlier in another state) and

contacted the doctors myself to push for another genetics consultation - and

they found the chromosome deletion by using a test that had been developed

less than a year before.

And I did push our endo to order an MRI. Charissa had been treated for

growth hormone deficiency for nearly 13 years and had never had an MRI. All

4 of the endos we had over the years (due to relocation) thought an MRI

would be " interesting but not necessary " . When the MRI that I had insisted

on came back showing multiple abnormalities of the white matter of the brain

we were immediately referred to the new neurologist in town, who turned out

to be a wonderful doctor.

I had to be persistant to get Charissa established with a good

psychiatrist and counselor to work with her on the behavioral issues. My

husband thought it was a waste of time & money when none of the medications

tried helped her, and he didn't see the counselor making much of a

difference in her behavior. But having these 2 professionals work with the

neurologist and look at and understand how her medical uniqueness and

behavioral issues go together was an important key.

All this established a new paper trail to present when applying for

support services, and it appears to be paying off. She has already been

approved by the state, and right now the SSI application is flying through

in record time - mainly because I could submit such extensive documentation

with the application that they do not have to spend time requesting

additional information from the doctors.

It is a fine line sometimes between making sure everything has been

covered and being desparate for answers. I know that there is no magic pill

to " cure " Charissa, but there are supports out there to help her live up to

her maximum potential. And as a mom, I am glad that I listened to that " gut

instinct " that told me to keep asking questions.

in Alaska

__________________________________________________

[Guest guest]

jeanie,

go brockton..........that is just great

cara mom to jacob

Jeanie Kinnicutt wrote:

Being pretty new to this site, I don't know anyone very well, but I must say

that I think that EVERYONE here is an amazing parent! I know of some people

that wouldn't even think about searching the internet for help with issues their

children are dealing with. Some people just take what their doctors say and

never question or wonder what else they could be doing.

By the way. I took Brockton to be weighed today for the first time since he

started the Pediasure. He's gained 9 oz. in less than 3 wks.! I've been

checking his BS and it's fine. He's such a spunky monkey!!

Jeanie

Dayna Carney wrote:

For 2 years I have belonged to this group and seen your occasional posts.

Until today I never realized what an amazing person and mother you are. I'm

glad your hard work is paying off. Charissa is lucky to have you!

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of R

Sent: Thursday, February 09, 2006 4:55 PM

To: RSS-Support

Subject: Re: Question regarding RSS look...Jeanie

Jeanie & Deb,

You both have brought up some great points! When Charissa was little and

under the RSS diagnosis I was concerned, but very calm & not fretting at

all. I did such a great job of handling the day-to-day issues of her poor

eating, constipation, feeding clinics, poor growth, PT, OT, etc. that our

endo at the time would refer new parents who were freaking out to contact me

(that was before support groups like this existed). During those early

days, the only thing I obsessed about was being a good mom and also keeping

good records - which was the best thing I could have done to prepare us for

now.

I admit, I DID obsess a bit when we suddenly had no diagnosis after we saw

Dr. H. when Charissa was 15. By this time I knew that Charissa would need

some support services as an adult. We had already applied for disability

services once & been told there was not enough evidence, come back when we

had more info.....and suddenly we had LESS info! But I had the " gut

instinct " that there was something going on that had to be investigated.

So I pushed for a neurological exam - but the only doctor here who was

doing them at that time refused to evaluate her because " if something was

wrong, it would have been found by now " . Boy, was he ever wrong!

I did research to find that there was a genetics clinic here (her previous

genetics consultation had been 15 years earlier in another state) and

contacted the doctors myself to push for another genetics consultation - and

they found the chromosome deletion by using a test that had been developed

less than a year before.

And I did push our endo to order an MRI. Charissa had been treated for

growth hormone deficiency for nearly 13 years and had never had an MRI. All

4 of the endos we had over the years (due to relocation) thought an MRI

would be " interesting but not necessary " . When the MRI that I had insisted

on came back showing multiple abnormalities of the white matter of the brain

we were immediately referred to the new neurologist in town, who turned out

to be a wonderful doctor.

I had to be persistant to get Charissa established with a good

psychiatrist and counselor to work with her on the behavioral issues. My

husband thought it was a waste of time & money when none of the medications

tried helped her, and he didn't see the counselor making much of a

difference in her behavior. But having these 2 professionals work with the

neurologist and look at and understand how her medical uniqueness and

behavioral issues go together was an important key.

All this established a new paper trail to present when applying for

support services, and it appears to be paying off. She has already been

approved by the state, and right now the SSI application is flying through

in record time - mainly because I could submit such extensive documentation

with the application that they do not have to spend time requesting

additional information from the doctors.

It is a fine line sometimes between making sure everything has been

covered and being desparate for answers. I know that there is no magic pill

to " cure " Charissa, but there are supports out there to help her live up to

her maximum potential. And as a mom, I am glad that I listened to that " gut

instinct " that told me to keep asking questions.

in Alaska

RSS-Support wrote:

Date: Wed, 8 Feb 2006 15:52:41 -0800 (PST)

From: Jeanie Kinnicutt

Subject: Re: Question regarding RSS look...Jeanie

I totally agree with you on that. Sometimes hope is all you have. BUT, I

have been driving myself crazy with all the worry and " what if's " . I have

found myself sort of " waiting for the bomb to drop " . I know there are alot

of people on here that feel the same way. It's frustrating and exhausting

and painful. Like I said.........it's just MY THEORY. No one has to agree

with me. LOL I just know that, until recently, I have been OBSESSED with

RSS. I eat when I'm stressed out. I've gained 40 lbs. since Brockton was

born! OUCH! I'm getting married in July and I look terrible! For my own

peace of mind, I have to let go of this obsession and take care of myself

and my son. Believe me..........I don't, by any means, think that our

childrens health issues aren't important. I just think that if your RSS

child doesn't have any of the serious issues at the moment, you shouldn't

let it get the best of you. My heart aches for those on this site that have

children with ve ry serious

RSS related illnesses. Fortunately, Brockton doesn't have any of

them............which isn't to say that he never will. I've just decided to

let go for now and worry about those issues when they come.

Thanks for your input.

Jeanie

VisibleWorship@... wrote:

In a message dated 2/8/2006 4:13:23 PM Central Standard Time,

awesome929@... writes:

Sometimes I think we just want to put a name with issues our children have,

such as height and weight issues. I've decided that I'm just going to accept

my son as he is and not give him a label until he has SERIOUS issues. Life

is just too short to worry about things that may never come to pass! That's

just my theory.

Just wanted to pipe in here...not trying to start a debate. I disagree with

this on some levels. Our kids will never be a label to us and to some with

very mild issues, it doesn't matter I suppose. But my child, like many

others here, have hypoglycemia and its nervewracking not having an

explanation of

why your child has this life-threatening problem. If there's an explanation

it helps to know it.

For those with kids with hypoG...with RSS it doens't change treatment but

kids with Fatty Oxidation disorders (many also have hypoG), it would make a

huge

difference. Those children can die if they are not on the right kind of

diet and you don't know if you need that diet unless you have a diagnosis.

I think the yearning for a diagnosis is living in the hope that there may be

a way to fix it. I think that's why we get so determined to get one...how

do you know you can't do something about it, if you don't know what IT is.

Does that make sense? I know some see it as labeling...I see it as living in

hope.

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia

and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo,

with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI

problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)

---------------------------------

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

Thank you SO MUCH. We are so excited about his last two visits to be weighed

that I'm afraid to go the next time!!! I think we've got our hopes up that this

will continue at this rate. I have to keep reminding myself not to get used to

this! It sure is nice though!

cara schobert wrote:

jeanie,

go brockton..........that is just great

cara mom to jacob

Jeanie Kinnicutt wrote:

Being pretty new to this site, I don't know anyone very well, but I must say

that I think that EVERYONE here is an amazing parent! I know of some people

that wouldn't even think about searching the internet for help with issues their

children are dealing with. Some people just take what their doctors say and

never question or wonder what else they could be doing.

By the way. I took Brockton to be weighed today for the first time since he

started the Pediasure. He's gained 9 oz. in less than 3 wks.! I've been

checking his BS and it's fine. He's such a spunky monkey!!

Jeanie

Dayna Carney wrote:

For 2 years I have belonged to this group and seen your occasional posts.

Until today I never realized what an amazing person and mother you are. I'm

glad your hard work is paying off. Charissa is lucky to have you!

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of R

Sent: Thursday, February 09, 2006 4:55 PM

To: RSS-Support

Subject: Re: Question regarding RSS look...Jeanie

Jeanie & Deb,

You both have brought up some great points! When Charissa was little and

under the RSS diagnosis I was concerned, but very calm & not fretting at

all. I did such a great job of handling the day-to-day issues of her poor

eating, constipation, feeding clinics, poor growth, PT, OT, etc. that our

endo at the time would refer new parents who were freaking out to contact me

(that was before support groups like this existed). During those early

days, the only thing I obsessed about was being a good mom and also keeping

good records - which was the best thing I could have done to prepare us for

now.

I admit, I DID obsess a bit when we suddenly had no diagnosis after we saw

Dr. H. when Charissa was 15. By this time I knew that Charissa would need

some support services as an adult. We had already applied for disability

services once & been told there was not enough evidence, come back when we

had more info.....and suddenly we had LESS info! But I had the " gut

instinct " that there was something going on that had to be investigated.

So I pushed for a neurological exam - but the only doctor here who was

doing them at that time refused to evaluate her because " if something was

wrong, it would have been found by now " . Boy, was he ever wrong!

I did research to find that there was a genetics clinic here (her previous

genetics consultation had been 15 years earlier in another state) and

contacted the doctors myself to push for another genetics consultation - and

they found the chromosome deletion by using a test that had been developed

less than a year before.

And I did push our endo to order an MRI. Charissa had been treated for

growth hormone deficiency for nearly 13 years and had never had an MRI. All

4 of the endos we had over the years (due to relocation) thought an MRI

would be " interesting but not necessary " . When the MRI that I had insisted

on came back showing multiple abnormalities of the white matter of the brain

we were immediately referred to the new neurologist in town, who turned out

to be a wonderful doctor.

I had to be persistant to get Charissa established with a good

psychiatrist and counselor to work with her on the behavioral issues. My

husband thought it was a waste of time & money when none of the medications

tried helped her, and he didn't see the counselor making much of a

difference in her behavior. But having these 2 professionals work with the

neurologist and look at and understand how her medical uniqueness and

behavioral issues go together was an important key.

All this established a new paper trail to present when applying for

support services, and it appears to be paying off. She has already been

approved by the state, and right now the SSI application is flying through

in record time - mainly because I could submit such extensive documentation

with the application that they do not have to spend time requesting

additional information from the doctors.

It is a fine line sometimes between making sure everything has been

covered and being desparate for answers. I know that there is no magic pill

to " cure " Charissa, but there are supports out there to help her live up to

her maximum potential. And as a mom, I am glad that I listened to that " gut

instinct " that told me to keep asking questions.

in Alaska

RSS-Support wrote:

Date: Wed, 8 Feb 2006 15:52:41 -0800 (PST)

From: Jeanie Kinnicutt

Subject: Re: Question regarding RSS look...Jeanie

I totally agree with you on that. Sometimes hope is all you have. BUT, I

have been driving myself crazy with all the worry and " what if's " . I have

found myself sort of " waiting for the bomb to drop " . I know there are alot

of people on here that feel the same way. It's frustrating and exhausting

and painful. Like I said.........it's just MY THEORY. No one has to agree

with me. LOL I just know that, until recently, I have been OBSESSED with

RSS. I eat when I'm stressed out. I've gained 40 lbs. since Brockton was

born! OUCH! I'm getting married in July and I look terrible! For my own

peace of mind, I have to let go of this obsession and take care of myself

and my son. Believe me..........I don't, by any means, think that our

childrens health issues aren't important. I just think that if your RSS

child doesn't have any of the serious issues at the moment, you shouldn't

let it get the best of you. My heart aches for those on this site that have

children with ve ry serious

RSS related illnesses. Fortunately, Brockton doesn't have any of

them............which isn't to say that he never will. I've just decided to

let go for now and worry about those issues when they come.

Thanks for your input.

Jeanie

VisibleWorship@... wrote:

In a message dated 2/8/2006 4:13:23 PM Central Standard Time,

awesome929@... writes:

Sometimes I think we just want to put a name with issues our children have,

such as height and weight issues. I've decided that I'm just going to accept

my son as he is and not give him a label until he has SERIOUS issues. Life

is just too short to worry about things that may never come to pass! That's

just my theory.

Just wanted to pipe in here...not trying to start a debate. I disagree with

this on some levels. Our kids will never be a label to us and to some with

very mild issues, it doesn't matter I suppose. But my child, like many

others here, have hypoglycemia and its nervewracking not having an

explanation of

why your child has this life-threatening problem. If there's an explanation

it helps to know it.

For those with kids with hypoG...with RSS it doens't change treatment but

kids with Fatty Oxidation disorders (many also have hypoG), it would make a

huge

difference. Those children can die if they are not on the right kind of

diet and you don't know if you need that diet unless you have a diagnosis.

I think the yearning for a diagnosis is living in the hope that there may be

a way to fix it. I think that's why we get so determined to get one...how

do you know you can't do something about it, if you don't know what IT is.

Does that make sense? I know some see it as labeling...I see it as living in

hope.

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia

and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo,

with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI

problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)

---------------------------------

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

i know what you mean about great weight gain ...................and then it

stops jacob is in a good weight right now (up 20 lb from two years ago) but in

not gaining again very well but hopfuly it will be enough to be heathy.

curnitly he is 54lb at 9 and 4'2 so it is like 7%all around i think

cara mom to jacob

Jeanie Kinnicutt wrote:

Thank you SO MUCH. We are so excited about his last two visits to be weighed

that I'm afraid to go the next time!!! I think we've got our hopes up that this

will continue at this rate. I have to keep reminding myself not to get used to

this! It sure is nice though!

cara schobert wrote:

jeanie,

go brockton..........that is just great

cara mom to jacob

Jeanie Kinnicutt wrote:

Being pretty new to this site, I don't know anyone very well, but I must say

that I think that EVERYONE here is an amazing parent! I know of some people

that wouldn't even think about searching the internet for help with issues their

children are dealing with. Some people just take what their doctors say and

never question or wonder what else they could be doing.

By the way. I took Brockton to be weighed today for the first time since he

started the Pediasure. He's gained 9 oz. in less than 3 wks.! I've been

checking his BS and it's fine. He's such a spunky monkey!!

Jeanie

Dayna Carney wrote:

For 2 years I have belonged to this group and seen your occasional posts.

Until today I never realized what an amazing person and mother you are. I'm

glad your hard work is paying off. Charissa is lucky to have you!

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of R

Sent: Thursday, February 09, 2006 4:55 PM

To: RSS-Support

Subject: Re: Question regarding RSS look...Jeanie

Jeanie & Deb,

You both have brought up some great points! When Charissa was little and

under the RSS diagnosis I was concerned, but very calm & not fretting at

all. I did such a great job of handling the day-to-day issues of her poor

eating, constipation, feeding clinics, poor growth, PT, OT, etc. that our

endo at the time would refer new parents who were freaking out to contact me

(that was before support groups like this existed). During those early

days, the only thing I obsessed about was being a good mom and also keeping

good records - which was the best thing I could have done to prepare us for

now.

I admit, I DID obsess a bit when we suddenly had no diagnosis after we saw

Dr. H. when Charissa was 15. By this time I knew that Charissa would need

some support services as an adult. We had already applied for disability

services once & been told there was not enough evidence, come back when we

had more info.....and suddenly we had LESS info! But I had the " gut

instinct " that there was something going on that had to be investigated.

So I pushed for a neurological exam - but the only doctor here who was

doing them at that time refused to evaluate her because " if something was

wrong, it would have been found by now " . Boy, was he ever wrong!

I did research to find that there was a genetics clinic here (her previous

genetics consultation had been 15 years earlier in another state) and

contacted the doctors myself to push for another genetics consultation - and

they found the chromosome deletion by using a test that had been developed

less than a year before.

And I did push our endo to order an MRI. Charissa had been treated for

growth hormone deficiency for nearly 13 years and had never had an MRI. All

4 of the endos we had over the years (due to relocation) thought an MRI

would be " interesting but not necessary " . When the MRI that I had insisted

on came back showing multiple abnormalities of the white matter of the brain

we were immediately referred to the new neurologist in town, who turned out

to be a wonderful doctor.

I had to be persistant to get Charissa established with a good

psychiatrist and counselor to work with her on the behavioral issues. My

husband thought it was a waste of time & money when none of the medications

tried helped her, and he didn't see the counselor making much of a

difference in her behavior. But having these 2 professionals work with the

neurologist and look at and understand how her medical uniqueness and

behavioral issues go together was an important key.

All this established a new paper trail to present when applying for

support services, and it appears to be paying off. She has already been

approved by the state, and right now the SSI application is flying through

in record time - mainly because I could submit such extensive documentation

with the application that they do not have to spend time requesting

additional information from the doctors.

It is a fine line sometimes between making sure everything has been

covered and being desparate for answers. I know that there is no magic pill

to " cure " Charissa, but there are supports out there to help her live up to

her maximum potential. And as a mom, I am glad that I listened to that " gut

instinct " that told me to keep asking questions.

in Alaska

RSS-Support wrote:

Date: Wed, 8 Feb 2006 15:52:41 -0800 (PST)

From: Jeanie Kinnicutt

Subject: Re: Question regarding RSS look...Jeanie

I totally agree with you on that. Sometimes hope is all you have. BUT, I

have been driving myself crazy with all the worry and " what if's " . I have

found myself sort of " waiting for the bomb to drop " . I know there are alot

of people on here that feel the same way. It's frustrating and exhausting

and painful. Like I said.........it's just MY THEORY. No one has to agree

with me. LOL I just know that, until recently, I have been OBSESSED with

RSS. I eat when I'm stressed out. I've gained 40 lbs. since Brockton was

born! OUCH! I'm getting married in July and I look terrible! For my own

peace of mind, I have to let go of this obsession and take care of myself

and my son. Believe me..........I don't, by any means, think that our

childrens health issues aren't important. I just think that if your RSS

child doesn't have any of the serious issues at the moment, you shouldn't

let it get the best of you. My heart aches for those on this site that have

children with ve ry serious

RSS related illnesses. Fortunately, Brockton doesn't have any of

them............which isn't to say that he never will. I've just decided to

let go for now and worry about those issues when they come.

Thanks for your input.

Jeanie

VisibleWorship@... wrote:

In a message dated 2/8/2006 4:13:23 PM Central Standard Time,

awesome929@... writes:

Sometimes I think we just want to put a name with issues our children have,

such as height and weight issues. I've decided that I'm just going to accept

my son as he is and not give him a label until he has SERIOUS issues. Life

is just too short to worry about things that may never come to pass! That's

just my theory.

Just wanted to pipe in here...not trying to start a debate. I disagree with

this on some levels. Our kids will never be a label to us and to some with

very mild issues, it doesn't matter I suppose. But my child, like many

others here, have hypoglycemia and its nervewracking not having an

explanation of

why your child has this life-threatening problem. If there's an explanation

it helps to know it.

For those with kids with hypoG...with RSS it doens't change treatment but

kids with Fatty Oxidation disorders (many also have hypoG), it would make a

huge

difference. Those children can die if they are not on the right kind of

diet and you don't know if you need that diet unless you have a diagnosis.

I think the yearning for a diagnosis is living in the hope that there may be

a way to fix it. I think that's why we get so determined to get one...how

do you know you can't do something about it, if you don't know what IT is.

Does that make sense? I know some see it as labeling...I see it as living in

hope.

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia

and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo,

with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI

problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)

---------------------------------

Yahoo! Mail

Use Photomail to share photos without annoying attachments.