Re: Introduction...looking for info after baby with hypoglycemia

[Guest guest]

Deb

What an incredible story! I am a Debby as well!

I read your story over on the Magic web site (many of us have dual membership!!)

I have not had experience with this but many, many others have and I am

wondering why no one has recommended a feeding tube?

If you go through our archives you will see that has been a major topic of

discussion around here as many of our children are getting them for exactly what

you described, wild fluxuating blood sugar levels which can be extremely

dangerous.

See what you can read on the archives and others will chime in soon!

Take care, you definitely have your hands full!

Debby in Toronto.

Introduction...looking for info after baby with

hypoglycemia

Hi there

My name is Deb and my hubby and I have adopted four children with various

special needs. All of our boys have ended up having more issues than we

originally realized so we are always needing new info and learning new

things.

Our oldest son, , would be 9 now, but he died two years ago with

Mitochondrial disease (a surprise after just being delayed from being

drug-exposed).

Our second son, just turned 7. Gaige was dxed with High Functioning autism

years ago, however, in May 2005, he passed out on us and we found out he had

hypoglycemia. We started seeing endocrine and they realized he is in

precocious puberty, which is very rare in boys. Our geneticist now thinks

that he

has a rare endocrine disease called Berardinelli-Seip syndrome which is a

lipodystrophy and only 1 in 12 million affected. Its so rare, its hardly

worth

mentioning but I thought I would because some of you who have been on the

list

for years maybe ran across another parent along the way...and I would LOVE

to talk with them.

Our daughter, Bliss, will be 5 in April. She had a traumatic birth and was

diagnosed with Cerebral Palsy. We were told she may not walk or talk but you

would NEVER know anything was wrong with her...thanks to a lot of early

intervention! She has some residual issues with her heel cords being tight

and

so forth but she is truly a miracle (and a delight to all who meet her! )

Our little guy, True, is the one who brings me here. He turned 1 last week.

He has a strange myriad of special needs that include neuromotor disorder

(mild cerebral palsy), dysphasia, undiagnosed GI issues, severe and

innumerable food allergies and a few more.

We live in Memphis, and were going to Vanderbilt (in Nashville, 3 hours

away) to see if the GI docs there could confirm what his allergist and others

have suspected here...that he has an Eosinophilic GI disease. He was having

an

endoscopy and colonoscopy and we had to do a full cleanout. So he went 24

hours prior with pedialyte only and then nothing for the 6 hours before his

2:30p procedure in the OR. When they got in there they found ulcers and its

going to be a logn process with many repeat biopsies to get the EGID

diagnosis

we went for...but then what happened...it complicates everything.

When we got home from Nashville the next afternoon, the phone was ringing.

They said True's blood sugar had dropped to 24! His CO2 level was 10! They

wanted us to go for repeat labs right away. They thought it must have been

an error since he would have been unconscience and then I freaked them out

when I told them that when the anesthesia nurse came to get him, he was

already

asleep...or so we thought...wihtout anesthesia! So apparently I was holding

my unconscience baby without knowing it...and had they been running late? I

shudder to think what could have happened.

He was doing fine that next day but not back to his baseline. The next

morning, he refused to eat, was lethargic and lifeless. I took his blood

sugar

with my son's glucometer and it was over 100. I called the pedi and they

told

me to call an ambulance...when they checked it, his blood sugar was 31!!!

So we were admitted through endocrine and they ran a few studies. However,

since he was treatede with D25 on the ambulance he said they didn't have much

hope of getting a dx this time around but would follow up.

Then this week (just ten days after the first time) he vomitted at

3am...totally out fo the blue...and the only time he did it. Then at 1p the

next day

he crashed! I took his blood sugar and got readings that said LO, 18 and

then the next time 112...we still don't know hwo to explain that. I took him

to

the ER and they c heck the machine and it was fine. However, they kept us

for two days and checked it every two hours. He still eats frequently becaus

eof his GI issues...32 oz of an amino-acid based formula 7 times a day but he

was dropping after 3 hours at night...into the 60s.

so they have discharged us, ran a bunch more labs...we see them in a

month...monitoring blood sugars and feeding every three hours aroudn the

clock...yuck! He had a 52 last night but seems to be getting back on his

feet. They

also diagnosed him with 'short stature for (help me out--fancy word for

parental) height " . HIs birthparents were 5.7 and 6.4!

He has stayed just above 20th% for height but they said given he had tall

parents that the 20% is way more generous than it should be. For weight he

is

around 15%. His head size is 67% though which is odd to me but no one else.

He still wears a 6-9 mo size quite comfortably.

Anyway, they are looking for a growth problem, but I was reading the Magic

foundations' newsletter and decided to look RSS, so I am here. There seems

to

be a lot of things he has but others notsomuch Sorry to be so

longwinded...I could have said more but was trying to keep it brief. He's

quite

complicated and this makes him way more so.

Any imput with similar stories or advice is quite welcomed!

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, Plagiocephaly with

assymeterical

face, 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]

Deb,

First let me say how blessed you all must feel!! I do not have much time

but thought I would share for a minute so excuse me if I seem short! First,

was True born Small for Gestational Age??? If so, whether or not he is RSS,

SGA and RSS children tend to require the same treatment protocols and share

much in common! Even if he is not SGA it sounds as though he is having many

of the same symptoms as many of our children.

Second, since you have already found MAGIC, and if True is SGA, you might

consider joining MAGIC. For the 35$ membership you will find they are a

wealth of information!! Specific to your questions right now, they have a

library of studies and articles relating to RSS/SGA. There are several on

hypoglycemia and ways to combat it.

My first thoughts to you are that keeping blood sugar stable requires small

frequent meals (though frequency varies by child). This includes overnight!

Studies (they are even in MAGIC's library log) show that cornstarch in a

bottle before bed can keep sugar stable overnight.

I see now that Jodi has just responded to you and she has much experience in

this arena!! I won't repeat her thoughts!! She is right on the ball and so

there is no need for me to repeat! I agree it is very important to find a

doctor to manage these symptoms!

Dayna, Mom to Alyssa, 4, RSS

_____

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

Behalf Of VisibleWorship@...

Sent: Tuesday, January 31, 2006 10:12 AM

To: RSS-Support

Subject: Introduction...looking for info after baby with

hypoglycemia

Hi there

My name is Deb and my hubby and I have adopted four children with various

special needs. All of our boys have ended up having more issues than we

originally realized so we are always needing new info and learning new

things.

Our oldest son, , would be 9 now, but he died two years ago with

Mitochondrial disease (a surprise after just being delayed from being

drug-exposed).

Our second son, just turned 7. Gaige was dxed with High Functioning autism

years ago, however, in May 2005, he passed out on us and we found out he

had

hypoglycemia. We started seeing endocrine and they realized he is in

precocious puberty, which is very rare in boys. Our geneticist now thinks

that he

has a rare endocrine disease called Berardinelli-Seip syndrome which is a

lipodystrophy and only 1 in 12 million affected. Its so rare, its hardly

worth

mentioning but I thought I would because some of you who have been on the

list

for years maybe ran across another parent along the way...and I would LOVE

to talk with them.

Our daughter, Bliss, will be 5 in April. She had a traumatic birth and was

diagnosed with Cerebral Palsy. We were told she may not walk or talk but

you

would NEVER know anything was wrong with her...thanks to a lot of early

intervention! She has some residual issues with her heel cords being tight

and

so forth but she is truly a miracle (and a delight to all who meet her! )

Our little guy, True, is the one who brings me here. He turned 1 last

week.

He has a strange myriad of special needs that include neuromotor disorder

(mild cerebral palsy), dysphasia, undiagnosed GI issues, severe and

innumerable food allergies and a few more.

We live in Memphis, and were going to Vanderbilt (in Nashville, 3 hours

away) to see if the GI docs there could confirm what his allergist and

others

have suspected here...that he has an Eosinophilic GI disease. He was

having an

endoscopy and colonoscopy and we had to do a full cleanout. So he went 24

hours prior with pedialyte only and then nothing for the 6 hours before his

2:30p procedure in the OR. When they got in there they found ulcers and

its

going to be a logn process with many repeat biopsies to get the EGID

diagnosis

we went for...but then what happened...it complicates everything.

When we got home from Nashville the next afternoon, the phone was ringing.

They said True's blood sugar had dropped to 24! His CO2 level was 10!

They

wanted us to go for repeat labs right away. They thought it must have been

an error since he would have been unconscience and then I freaked them out

when I told them that when the anesthesia nurse came to get him, he was

already

asleep...or so we thought...wihtout anesthesia! So apparently I was

holding

my unconscience baby without knowing it...and had they been running late?

I

shudder to think what could have happened.

He was doing fine that next day but not back to his baseline. The next

morning, he refused to eat, was lethargic and lifeless. I took his blood

sugar

with my son's glucometer and it was over 100. I called the pedi and they

told

me to call an ambulance...when they checked it, his blood sugar was 31!!!

So we were admitted through endocrine and they ran a few studies. However,

since he was treatede with D25 on the ambulance he said they didn't have

much

hope of getting a dx this time around but would follow up.

Then this week (just ten days after the first time) he vomitted at

3am...totally out fo the blue...and the only time he did it. Then at 1p

the next day

he crashed! I took his blood sugar and got readings that said LO, 18 and

then the next time 112...we still don't know hwo to explain that. I took

him to

the ER and they c heck the machine and it was fine. However, they kept us

for two days and checked it every two hours. He still eats frequently

becaus

eof his GI issues...32 oz of an amino-acid based formula 7 times a day but

he

was dropping after 3 hours at night...into the 60s.

so they have discharged us, ran a bunch more labs...we see them in a

month...monitoring blood sugars and feeding every three hours aroudn the

clock...yuck! He had a 52 last night but seems to be getting back on his

feet. They

also diagnosed him with 'short stature for (help me out--fancy word for

parental) height " . HIs birthparents were 5.7 and 6.4!

He has stayed just above 20th% for height but they said given he had tall

parents that the 20% is way more generous than it should be. For weight he

is

around 15%. His head size is 67% though which is odd to me but no one

else.

He still wears a 6-9 mo size quite comfortably.

Anyway, they are looking for a growth problem, but I was reading the Magic

foundations' newsletter and decided to look RSS, so I am here. There seems

to

be a lot of things he has but others notsomuch Sorry to be so

longwinded...I could have said more but was trying to keep it brief. He's

quite

complicated and this makes him way more so.

Any imput with similar stories or advice is quite welcomed!

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, Plagiocephaly with

assymeterical

face, 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]

WOW!

Deb,

you and your hubby are truly gifts from God.

I thought I had my hands full with my 4 specail needs kids. mine are mostly

emotional stuff though. Eva is the only one that is physical. She is RSS and

hypopitutary dwrafism. She is on GHT. growth hormone treatment. she has had

the hpyoglicemia and lactose intolerant. also had tonsil issuses. we were so

close to having a g-tube in that they made us make a decision on the spot. she

had been hospitalized for not eating. she would lose a pound in just under 12

hours if she decided not to eat anything or more if she got the yags or runs.

they discovered that she has a slight bit of OCD. she must constantly stop to

wash her hands and face off. but the biggy was that her tonsils had gotten so

large that she could no longer swallow anything unless it was liquid. she only

had 1cm opening between her tonsils to swallow and breathe thru. yes she snored

like a freight train and had to sleep in a sitting position.

option was tonsils out and g-tube in at same time. we begged and got them to

agree to just tonsils first and see how she did after a week. if no improvement

then we would do the tube. insurance was;nt going to pay for both anyway. we

did the tonsils and went home sameday. insurance would';nt pay for her to stay

overnight. we had it done at a hospital that the insurance paid for. not local.

then that night she was in ou local thru the ER. in for 2 days which is what the

Dr. wanted her to stay for anyway. cost the insurance more than if they

would've just kept her. After all cleared she took off on eating and gained 2

lbs in the first month. so we are still without a g-tube. no she did'nt have a

lot of upper respitory problems so the tonsils did'nt have any reason to be that

large. they were the size of a small adults. the only thing big on her. she

was 16 lbs and about 22inches tall at the time. she was 2 years old. this is

before we had the GH test done. Vandy is

a good childrens hospital. I have a cousin who is a pharmacist there. also met

people at Kosairs in Louisville that had been there with thier kids. Eva now

goes to Riley's in Indy and it is 2 hours away for us. i know how hard it is

to get ready for tests and stuff. you are lucky to have a husband to help you.

You sound like you are very well educated and like me research your butt off.

I also don't take no for a answer. I go with my gut. I have been known to

stomp my foot and get my way. Eva is now just 23 days shy of 7. She is 39

inches tall and 32 pounds. her 4 year old brother is 39 pounds and 39 inches

tall. she never slows down and her dad has a high metabolism so that is most of

our weight problem now. she does try to eat. she just does;nt have the tummy

size for it. that is what our endo and GI told us. the tummy is about the size

of the fist on all humans. so she don't have much room. we just pile in the

calories. the Dr. is'nt worried because she is healthy. we do still have to

watch her sugar levels but since there is diabetes on both sides we know how to

eat for that. so no major problems there. i am much more conciuos about her

diet than dad. i weigh her when she gets here and then plan the menu

accordinly. i always have her gaining weight at least a pound

by the time she leaves.

keep a eye on this site for we are a wealth of info on just about everything.

feel free to ask anything.

also check out the pictures as RSS is a phenotype not genotype. i find it

interesting how much our kids look alike. including hair color for some.

God Bless You,

Donna, mom to Eva G., 6.11 yrs, 32lbs., 39ins. RSS/GHD.

Jad 17yrs,ODD, Jasmin 12yrs, ADHD, Mikey 4.6 yrs,

ADHD possible Autism.

VisibleWorship@... wrote:

Hi there

My name is Deb and my hubby and I have adopted four children with various

special needs. All of our boys have ended up having more issues than we

originally realized so we are always needing new info and learning new things.

Our oldest son, , would be 9 now, but he died two years ago with

Mitochondrial disease (a surprise after just being delayed from being

drug-exposed).

Our second son, just turned 7. Gaige was dxed with High Functioning autism

years ago, however, in May 2005, he passed out on us and we found out he had

hypoglycemia. We started seeing endocrine and they realized he is in

precocious puberty, which is very rare in boys. Our geneticist now thinks that

he

has a rare endocrine disease called Berardinelli-Seip syndrome which is a

lipodystrophy and only 1 in 12 million affected. Its so rare, its hardly worth

mentioning but I thought I would because some of you who have been on the list

for years maybe ran across another parent along the way...and I would LOVE

to talk with them.

Our daughter, Bliss, will be 5 in April. She had a traumatic birth and was

diagnosed with Cerebral Palsy. We were told she may not walk or talk but you

would NEVER know anything was wrong with her...thanks to a lot of early

intervention! She has some residual issues with her heel cords being tight and

so forth but she is truly a miracle (and a delight to all who meet her! )

Our little guy, True, is the one who brings me here. He turned 1 last week.

He has a strange myriad of special needs that include neuromotor disorder

(mild cerebral palsy), dysphasia, undiagnosed GI issues, severe and

innumerable food allergies and a few more.

We live in Memphis, and were going to Vanderbilt (in Nashville, 3 hours

away) to see if the GI docs there could confirm what his allergist and others

have suspected here...that he has an Eosinophilic GI disease. He was having an

endoscopy and colonoscopy and we had to do a full cleanout. So he went 24

hours prior with pedialyte only and then nothing for the 6 hours before his

2:30p procedure in the OR. When they got in there they found ulcers and its

going to be a logn process with many repeat biopsies to get the EGID diagnosis

we went for...but then what happened...it complicates everything.

When we got home from Nashville the next afternoon, the phone was ringing.

They said True's blood sugar had dropped to 24! His CO2 level was 10! They

wanted us to go for repeat labs right away. They thought it must have been

an error since he would have been unconscience and then I freaked them out

when I told them that when the anesthesia nurse came to get him, he was already

asleep...or so we thought...wihtout anesthesia! So apparently I was holding

my unconscience baby without knowing it...and had they been running late? I

shudder to think what could have happened.

He was doing fine that next day but not back to his baseline. The next

morning, he refused to eat, was lethargic and lifeless. I took his blood sugar

with my son's glucometer and it was over 100. I called the pedi and they told

me to call an ambulance...when they checked it, his blood sugar was 31!!!

So we were admitted through endocrine and they ran a few studies. However,

since he was treatede with D25 on the ambulance he said they didn't have much

hope of getting a dx this time around but would follow up.

Then this week (just ten days after the first time) he vomitted at

3am...totally out fo the blue...and the only time he did it. Then at 1p the

next day

he crashed! I took his blood sugar and got readings that said LO, 18 and

then the next time 112...we still don't know hwo to explain that. I took him

to

the ER and they c heck the machine and it was fine. However, they kept us

for two days and checked it every two hours. He still eats frequently becaus

eof his GI issues...32 oz of an amino-acid based formula 7 times a day but he

was dropping after 3 hours at night...into the 60s.

so they have discharged us, ran a bunch more labs...we see them in a

month...monitoring blood sugars and feeding every three hours aroudn the

clock...yuck! He had a 52 last night but seems to be getting back on his feet.

They

also diagnosed him with 'short stature for (help me out--fancy word for

parental) height " . HIs birthparents were 5.7 and 6.4!

He has stayed just above 20th% for height but they said given he had tall

parents that the 20% is way more generous than it should be. For weight he is

around 15%. His head size is 67% though which is odd to me but no one else.

He still wears a 6-9 mo size quite comfortably.

Anyway, they are looking for a growth problem, but I was reading the Magic

foundations' newsletter and decided to look RSS, so I am here. There seems to

be a lot of things he has but others notsomuch Sorry to be so

longwinded...I could have said more but was trying to keep it brief. He's

quite

complicated and this makes him way more so.

Any imput with similar stories or advice is quite welcomed!

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, Plagiocephaly with assymeterical

face, 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]

Donna,

What was done for Eva to have a diagnosis of

hypopituitary dwarfism? When we were at Dr. H's

office for 's blood work on Monday, I was

reading off the computer diagnosis they had typed in

for her and one was pituitary dwarfism and growth

hormone deficient. I'm just wondering if there are

different tests for that. is 6.1 years old

and she is 33 pounds and about 40.5 inches.

B

and Kelli

--- Donna wrote:

> WOW!

> Deb,

> you and your hubby are truly gifts from God.

> I thought I had my hands full with my 4 specail

> needs kids. mine are mostly emotional stuff though.

> Eva is the only one that is physical. She is RSS

> and hypopitutary dwrafism. She is on GHT. growth

> hormone treatment. she has had the hpyoglicemia and

> lactose intolerant. also had tonsil issuses. we

> were so close to having a g-tube in that they made

> us make a decision on the spot. she had been

> hospitalized for not eating. she would lose a pound

> in just under 12 hours if she decided not to eat

> anything or more if she got the yags or runs. they

> discovered that she has a slight bit of OCD. she

> must constantly stop to wash her hands and face off.

> but the biggy was that her tonsils had gotten so

> large that she could no longer swallow anything

> unless it was liquid. she only had 1cm opening

> between her tonsils to swallow and breathe thru.

> yes she snored like a freight train and had to sleep

> in a sitting position.

> option was tonsils out and g-tube in at same time.

> we begged and got them to agree to just tonsils

> first and see how she did after a week. if no

> improvement then we would do the tube. insurance

> was;nt going to pay for both anyway. we did the

> tonsils and went home sameday. insurance would';nt

> pay for her to stay overnight. we had it done at a

> hospital that the insurance paid for. not local.

> then that night she was in ou local thru the ER. in

> for 2 days which is what the Dr. wanted her to stay

> for anyway. cost the insurance more than if they

> would've just kept her. After all cleared she took

> off on eating and gained 2 lbs in the first month.

> so we are still without a g-tube. no she did'nt

> have a lot of upper respitory problems so the

> tonsils did'nt have any reason to be that large.

> they were the size of a small adults. the only

> thing big on her. she was 16 lbs and about 22inches

> tall at the time. she was 2 years old. this is

> before we had the GH test done. Vandy is

> a good childrens hospital. I have a cousin who is a

> pharmacist there. also met people at Kosairs in

> Louisville that had been there with thier kids. Eva

> now goes to Riley's in Indy and it is 2 hours away

> for us. i know how hard it is to get ready for

> tests and stuff. you are lucky to have a husband to

> help you.

> You sound like you are very well educated and like

> me research your butt off. I also don't take no for

> a answer. I go with my gut. I have been known to

> stomp my foot and get my way. Eva is now just 23

> days shy of 7. She is 39 inches tall and 32 pounds.

> her 4 year old brother is 39 pounds and 39 inches

> tall. she never slows down and her dad has a high

> metabolism so that is most of our weight problem

> now. she does try to eat. she just does;nt have the

> tummy size for it. that is what our endo and GI

> told us. the tummy is about the size of the fist on

> all humans. so she don't have much room. we just

> pile in the calories. the Dr. is'nt worried because

> she is healthy. we do still have to watch her sugar

> levels but since there is diabetes on both sides we

> know how to eat for that. so no major problems

> there. i am much more conciuos about her diet than

> dad. i weigh her when she gets here and then plan

> the menu accordinly. i always have her gaining

> weight at least a pound

> by the time she leaves.

> keep a eye on this site for we are a wealth of

> info on just about everything.

> feel free to ask anything.

> also check out the pictures as RSS is a phenotype

> not genotype. i find it interesting how much our

> kids look alike. including hair color for some.

> God Bless You,

> Donna, mom to Eva G., 6.11 yrs, 32lbs., 39ins.

> RSS/GHD.

> Jad 17yrs,ODD, Jasmin

> 12yrs, ADHD, Mikey 4.6 yrs, ADHD possible Autism.

>

>

>

>

>

>

>

>

>

> VisibleWorship@... wrote:

>

> Hi there

>

> My name is Deb and my hubby and I have adopted four

> children with various

> special needs. All of our boys have ended up having

> more issues than we

> originally realized so we are always needing new

> info and learning new things.

>

> Our oldest son, , would be 9 now, but he died

> two years ago with

> Mitochondrial disease (a surprise after just being

> delayed from being

> drug-exposed).

>

> Our second son, just turned 7. Gaige was dxed with

> High Functioning autism

> years ago, however, in May 2005, he passed out on us

> and we found out he had

> hypoglycemia. We started seeing endocrine and they

> realized he is in

> precocious puberty, which is very rare in boys. Our

> geneticist now thinks that he

> has a rare endocrine disease called

> Berardinelli-Seip syndrome which is a

> lipodystrophy and only 1 in 12 million affected.

> Its so rare, its hardly worth

> mentioning but I thought I would because some of you

> who have been on the list

> for years maybe ran across another parent along the

> way...and I would LOVE

> to talk with them.

>

> Our daughter, Bliss, will be 5 in April. She had a

> traumatic birth and was

> diagnosed with Cerebral Palsy. We were told she may

> not walk or talk but you

> would NEVER know anything was wrong with

> her...thanks to a lot of early

> intervention! She has some residual issues with her

> heel cords being tight and

> so forth but she is truly a miracle (and a delight

> to all who meet her! )

>

> Our little guy, True, is the one who brings me here.

> He turned 1 last week.

> He has a strange myriad of special needs that

> include neuromotor disorder

> (mild cerebral palsy), dysphasia, undiagnosed GI

> issues, severe and

> innumerable food allergies and a few more.

>

> We live in Memphis, and were going to Vanderbilt (in

> Nashville, 3 hours

> away) to see if the GI docs there could confirm what

> his allergist and others

> have suspected here...that he has an Eosinophilic GI

> disease. He was having an

> endoscopy and colonoscopy and we had to do a full

> cleanout. So he went 24

> hours prior with pedialyte only and then nothing for

> the 6 hours before his

> 2:30p procedure in the OR. When they got in there

> they found ulcers and its

> going to be a logn process with many repeat biopsies

> to get the EGID diagnosis

> we went for...but then what happened...it

> complicates everything.

>

> When we got home from Nashville the next afternoon,

> the phone was ringing.

> They said True's blood sugar had dropped to 24! His

> CO2 level was 10! They

> wanted us to go for repeat labs right away. They

> thought it must have been

> an error since he would have been unconscience and

> then I freaked them out

> when I told them that when the anesthesia nurse came

> to get him, he was already

> asleep...or so we thought...wihtout anesthesia! So

> apparently I was holding

> my unconscience baby without knowing it...and had

> they been running late? I

> shudder to think what could have happened.

>

> He was doing fine that next day but not back to his

> baseline. The next

> morning, he refused to eat, was lethargic and

> lifeless. I took his blood sugar

> with my son's glucometer and it was over 100. I

> called the pedi and they told

> me to call an ambulance...when they checked it, his

> blood sugar was 31!!!

> So we were admitted through endocrine and they ran a

> few studies. However,

> since he was treatede with D25 on the ambulance he

> said they didn't have much

> hope of getting a dx this time around but would

> follow up.

>

> Then this week (just ten days after the first time)

> he vomitted at

> 3am...totally out fo the blue...and the only time he

> did it. Then at 1p the next day

> he crashed! I took his blood sugar and got readings

> that said LO, 18 and

> then the next time 112...we still don't know hwo to

> explain that. I took him to

> the ER and they c heck the machine and it was fine.

>

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