Isaac was in the hospital **long

June 25, 2005

Hi All-

Just wanted to give you an update on Isaac. Last week on Thursday

evening around 12 am (technically Friday morning) Issac started

throwing up..my in-laws had a gastroenteritis bug and Isaac got

it..he threw up all night and continued into the next day. I woke up

Friday sick too and Art was in Mexico so I was trying to take care

of both of us. I had called after the after hours nurse and his

pediatrician's office MANY times and they all told me to give him

pedialyte every hour and that would keep his glucose up. I gave him

double what they suggested every hour. Around 5 am I woke up and

Isaac looked like he was struggling to breathe. He was gasping and

shaking. I called 911 and the paramedics rushed us to the hospital.

They checked his blood sugar and it was 4. His blood sugar plummeted

that low in 1 hour. They put an ISO in his leg (put a large needle

directly into the bone in his leg). The ER got his blood sugar up

and he was admitted to the hospital. The doctor said that Isaac had

a seizure and we had to do a MRI. The MRI came back normal. During

the multitude of tests this week they found that Isaac has a rare

metabolic disorder called MCAD. It is unrelated to his RSS and

basically it means that Isaac's body doesn't produce the proper

enzyme to break down fat to use as energy. He does not spill ketones

(all of the readings while he was sick were a false sense of

security)One in four kids are diagnosed with this at an autopsy. His

endocrinologist said that he had already prepared a speech about how

it wasn't our fault because he sincerely belived Isaac had brain

damage. He said " someone up there was looking out for him " .They

have referred us to a metabolic genetisist that we will see on

Tuesday to learn how to manage this condition. It is an inherited

disorder so there is a 1 in 4 chance that Sofia will have it so they

will do an extended newborn screen when she is born. Isaac was

discharged from the hospital at 6 pm yesterday and is playing,

eating and very happy not to see anyone in scrubs. While in the

hospital he had 5 blood draws and they poked his toes every 4 hours

to check blood sugar. It has been the most mentally and physically

exhausting 9 days of my life and as I watch him play there are tears

because it is a miracle that he lived through it and there is no

brain damage. Hug your kid tight..

Mimi

mom to Isaac (17 mos RSS, Hypothyroid, MCAD)

Sofia due 9-27-05

June 25, 2005

Oh my gosh, Mimi. I am soooo sorry you had to go through all of

that. But, I am so thankful that Isaac is okay. That is way too

scary about the MCAD. I also emailed you privately. I am sincerely

happy everything turned out the way it did though. Isaac is a

precious little boy and I remember him and his chubby little legs

last year at the convention in the picture room. What a heart-melter.

Take care, Mimi.

Jodi R.

's mommy

> Hi All-

>

> Just wanted to give you an update on Isaac. Last week on Thursday

> evening around 12 am (technically Friday morning) Issac started

> throwing up..my in-laws had a gastroenteritis bug and Isaac got

> it..he threw up all night and continued into the next day. I woke

up

> Friday sick too and Art was in Mexico so I was trying to take care

> of both of us. I had called after the after hours nurse and his

> pediatrician's office MANY times and they all told me to give him

> pedialyte every hour and that would keep his glucose up. I gave him

> double what they suggested every hour. Around 5 am I woke up and

> Isaac looked like he was struggling to breathe. He was gasping and

> shaking. I called 911 and the paramedics rushed us to the hospital.

> They checked his blood sugar and it was 4. His blood sugar

plummeted

> that low in 1 hour. They put an ISO in his leg (put a large needle

> directly into the bone in his leg). The ER got his blood sugar up

> and he was admitted to the hospital. The doctor said that Isaac had

> a seizure and we had to do a MRI. The MRI came back normal. During

> the multitude of tests this week they found that Isaac has a rare

> metabolic disorder called MCAD. It is unrelated to his RSS and

> basically it means that Isaac's body doesn't produce the proper

> enzyme to break down fat to use as energy. He does not spill

ketones

> (all of the readings while he was sick were a false sense of

> security)One in four kids are diagnosed with this at an autopsy.

His

> endocrinologist said that he had already prepared a speech about

how

> it wasn't our fault because he sincerely belived Isaac had brain

> damage. He said " someone up there was looking out for him " .They

> have referred us to a metabolic genetisist that we will see on

> Tuesday to learn how to manage this condition. It is an inherited

> disorder so there is a 1 in 4 chance that Sofia will have it so

they

> will do an extended newborn screen when she is born. Isaac was

> discharged from the hospital at 6 pm yesterday and is playing,

> eating and very happy not to see anyone in scrubs. While in the

> hospital he had 5 blood draws and they poked his toes every 4 hours

> to check blood sugar. It has been the most mentally and physically

> exhausting 9 days of my life and as I watch him play there are

tears

> because it is a miracle that he lived through it and there is no

> brain damage. Hug your kid tight..

>

> Mimi

> mom to Isaac (17 mos RSS, Hypothyroid, MCAD)

> Sofia due 9-27-05

June 25, 2005

Hi Mimi

Sorry to hear Isaac has been so unwell.

You must of had quite a scare. Im glad the MCAD got picked up now.

thinking of you

Jody( mum to Liam and Cameron)

> Hi All-

>

> Just wanted to give you an update on Isaac. Last week on Thursday

> evening around 12 am (technically Friday morning) Issac started

> throwing up..my in-laws had a gastroenteritis bug and Isaac got

> it..he threw up all night and continued into the next day. I woke

up

> Friday sick too and Art was in Mexico so I was trying to take care

> of both of us. I had called after the after hours nurse and his

> pediatrician's office MANY times and they all told me to give him

> pedialyte every hour and that would keep his glucose up. I gave

him

> double what they suggested every hour. Around 5 am I woke up and

> Isaac looked like he was struggling to breathe. He was gasping and

> shaking. I called 911 and the paramedics rushed us to the

hospital.

> They checked his blood sugar and it was 4. His blood sugar

plummeted

> that low in 1 hour. They put an ISO in his leg (put a large needle

> directly into the bone in his leg). The ER got his blood sugar up

> and he was admitted to the hospital. The doctor said that Isaac

had

> a seizure and we had to do a MRI. The MRI came back normal. During

> the multitude of tests this week they found that Isaac has a rare

> metabolic disorder called MCAD. It is unrelated to his RSS and

> basically it means that Isaac's body doesn't produce the proper

> enzyme to break down fat to use as energy. He does not spill

ketones

> (all of the readings while he was sick were a false sense of

> security)One in four kids are diagnosed with this at an autopsy.

His

> endocrinologist said that he had already prepared a speech about

how

> it wasn't our fault because he sincerely belived Isaac had brain

> damage. He said " someone up there was looking out for him " .They

> have referred us to a metabolic genetisist that we will see on

> Tuesday to learn how to manage this condition. It is an inherited

> disorder so there is a 1 in 4 chance that Sofia will have it so

they

> will do an extended newborn screen when she is born. Isaac was

> discharged from the hospital at 6 pm yesterday and is playing,

> eating and very happy not to see anyone in scrubs. While in the

> hospital he had 5 blood draws and they poked his toes every 4

hours

> to check blood sugar. It has been the most mentally and physically

> exhausting 9 days of my life and as I watch him play there are

tears

> because it is a miracle that he lived through it and there is no

> brain damage. Hug your kid tight..

>

> Mimi

> mom to Isaac (17 mos RSS, Hypothyroid, MCAD)

> Sofia due 9-27-05

June 26, 2005

Mimi,

I am so sorry that you and Isaac had to go through all of that. How

scary. But someone was looking out for you two. I know you have to

learn to handle yet another issue, but at least you found out about it

before it was too late! Wow.

I hope that baby Sofia is fine when they test her at birth. We'll get

those prayers going as we always do when people on this listserve need

them.

And I will make sure to hug my " kids " today. They're not too huggable

at almost 17 and 20, but too bad - I'm their mom and I'm allowed -

just " not in public, Mom! "

Jodi Z

June 26, 2005

OH no. How scary. I am so so happy Isaac seems well now. Please

let us know more about his condition.

Take care of yourself and him...

MEgan, mom to 5, and Emerence 29 mo 21 lb 32 "