Re: New member introduction

Posted October 31, 2002 · October 31, 2002

I am sooooo glad your here also. We are friendly , caring & many are very

knowledgeable. There are several who were misdiagnosed at first too. Share

your thoughts, joys & problems. ask questions, give answers , we are all

here to share & learn. it is very helpful for ones mind to be with others .

Welcome, You have a good friend there:):)

LOVE & HUGS, grandmomBEV

New Member Introduction

Hello Group...

My name is Jana and I'm a 25 year old single mother to a 23 month old little

girl, Madeline.

Madeline has been plagued with health issues since birth; it began with a

ventricular septal defect (hole in the heart), has crossed the gammit of GI

issues, and I believe in total we've touched at least 12 areas of medical

specialty. We have kidney, liver and bladder issues, some neurological, and

we've left little to the imagination in between.

Until recently we were under the impression that we had a solid diagnosis of

Glutaric Acidemia Type 2, an inborn error of metabolism, also known as an

FOD (Fatty Oxidation Disorder). However, recently of few of her specialists

suggested the possibility of GA2 being mistaken for CF. So, here we are.

We've now had one sweat test completed, with a result positive for high

salt, and we're preparing for a second test for the same. (I'd very much

like to know if there are other parents out there in similar circumstance

with diagnosis' being swapped and confused. Thanks.)

This group was recommended to me by a very good friend who is also a member.

For the past while we've been going through some almost identical

experiences with our children; initially we had the same diagnosis (GA2) and

we've both now been steered toward testing for CF.

My good friend suggested that I join this group, as she was very impressed

with the support, kindness and amazing amounts of invaluable information.

I'm very much looking forward to observing and participating in this group.

As a new-to-this mom, any guidance anyone has for me would be so fantastic.

So, thank you in advance for your guidance and support, and also for

allowing me to be a member of your community.

Truly,

Jana

Madeline - 23 months

Posted October 31, 2002 · October 31, 2002

I am sooooo glad your here also. We are friendly , caring & many are very

knowledgeable. There are several who were misdiagnosed at first too. Share

your thoughts, joys & problems. ask questions, give answers , we are all

here to share & learn. it is very helpful for ones mind to be with others .

Welcome, You have a good friend there:):)

LOVE & HUGS, grandmomBEV

New Member Introduction

Hello Group...

My name is Jana and I'm a 25 year old single mother to a 23 month old little

girl, Madeline.

Madeline has been plagued with health issues since birth; it began with a

ventricular septal defect (hole in the heart), has crossed the gammit of GI

issues, and I believe in total we've touched at least 12 areas of medical

specialty. We have kidney, liver and bladder issues, some neurological, and

we've left little to the imagination in between.

Until recently we were under the impression that we had a solid diagnosis of

Glutaric Acidemia Type 2, an inborn error of metabolism, also known as an

FOD (Fatty Oxidation Disorder). However, recently of few of her specialists

suggested the possibility of GA2 being mistaken for CF. So, here we are.

We've now had one sweat test completed, with a result positive for high

salt, and we're preparing for a second test for the same. (I'd very much

like to know if there are other parents out there in similar circumstance

with diagnosis' being swapped and confused. Thanks.)

This group was recommended to me by a very good friend who is also a member.

For the past while we've been going through some almost identical

experiences with our children; initially we had the same diagnosis (GA2) and

we've both now been steered toward testing for CF.

My good friend suggested that I join this group, as she was very impressed

with the support, kindness and amazing amounts of invaluable information.

I'm very much looking forward to observing and participating in this group.

As a new-to-this mom, any guidance anyone has for me would be so fantastic.

So, thank you in advance for your guidance and support, and also for

allowing me to be a member of your community.

Truly,

Jana

Madeline - 23 months

Posted October 31, 2002 · October 31, 2002

I am sooooo glad your here also. We are friendly , caring & many are very

knowledgeable. There are several who were misdiagnosed at first too. Share

your thoughts, joys & problems. ask questions, give answers , we are all

here to share & learn. it is very helpful for ones mind to be with others .

Welcome, You have a good friend there:):)

LOVE & HUGS, grandmomBEV

New Member Introduction

Hello Group...

My name is Jana and I'm a 25 year old single mother to a 23 month old little

girl, Madeline.

Madeline has been plagued with health issues since birth; it began with a

ventricular septal defect (hole in the heart), has crossed the gammit of GI

issues, and I believe in total we've touched at least 12 areas of medical

specialty. We have kidney, liver and bladder issues, some neurological, and

we've left little to the imagination in between.

Until recently we were under the impression that we had a solid diagnosis of

Glutaric Acidemia Type 2, an inborn error of metabolism, also known as an

FOD (Fatty Oxidation Disorder). However, recently of few of her specialists

suggested the possibility of GA2 being mistaken for CF. So, here we are.

We've now had one sweat test completed, with a result positive for high

salt, and we're preparing for a second test for the same. (I'd very much

like to know if there are other parents out there in similar circumstance

with diagnosis' being swapped and confused. Thanks.)

This group was recommended to me by a very good friend who is also a member.

For the past while we've been going through some almost identical

experiences with our children; initially we had the same diagnosis (GA2) and

we've both now been steered toward testing for CF.

My good friend suggested that I join this group, as she was very impressed

with the support, kindness and amazing amounts of invaluable information.

I'm very much looking forward to observing and participating in this group.

As a new-to-this mom, any guidance anyone has for me would be so fantastic.

So, thank you in advance for your guidance and support, and also for

allowing me to be a member of your community.

Truly,

Jana

Madeline - 23 months

Posted October 31, 2002 · October 31, 2002

Hi Jana,

welcome to the group! We've talked about Caden's horror dx story a

lot lately here and I assume that Krystena has shared our comments

with you. If not, just search the archive for " Krystena " and you'll

find tons of info. That was nice from her to recommend this list.

It's sad to hear about Madeline's ongoing help problems and while I

hope she has something less serious than CF I even more wish for the

both of you that there will be a diagnosis soon and that Madeline

will do much better when she receives the correct treatment.

Peace

Torsten

> Hello Group...

>

> My name is Jana and I'm a 25 year old single mother to a 23 month

old little girl, Madeline.

>

> Madeline has been plagued with health issues since birth; it began

with a ventricular septal defect (hole in the heart), has crossed the

gammit of GI issues, and I believe in total we've touched at least 12

areas of medical specialty. We have kidney, liver and bladder issues,

some neurological, and we've left little to the imagination in

between.

>

> Until recently we were under the impression that we had a solid

diagnosis of Glutaric Acidemia Type 2, an inborn error of metabolism,

also known as an FOD (Fatty Oxidation Disorder). However, recently of

few of her specialists suggested the possibility of GA2 being

mistaken for CF. So, here we are.

>

> We've now had one sweat test completed, with a result positive for

high salt, and we're preparing for a second test for the same. (I'd

very much like to know if there are other parents out there in

similar circumstance with diagnosis' being swapped and confused.

Thanks.)

>

> This group was recommended to me by a very good friend who is also

a member. For the past while we've been going through some almost

identical experiences with our children; initially we had the same

diagnosis (GA2) and we've both now been steered toward testing for CF.

>

> My good friend suggested that I join this group, as she was very

impressed with the support, kindness and amazing amounts of

invaluable information.

>

> I'm very much looking forward to observing and participating in

this group. As a new-to-this mom, any guidance anyone has for me

would be so fantastic.

>

> So, thank you in advance for your guidance and support, and also

for allowing me to be a member of your community.

>

> Truly,

> Jana

> Madeline - 23 months

>

Posted October 31, 2002 · October 31, 2002