Re: Introduction...looking for info

[Guest guest]

Wow! Deb, you sure have a lot on your plate. God bless you all for taking such

good care

of those special children. There are days when I have difficulty just managing

my two who

have special needs of their own!

Whether or not True has RSS or is SGA (small for gestational age), the

hypoglycemia and

stomach issues are similar to what many of us face with our children. My son

Max,

especially, had had these. He is 17.5 years now and still having issues,

although they are

not as severe and of an emergency lately. Whew! We have been through a lot.

The hypoglycemia has me very concerned. It does not sound as if it is being

managed well

at all. Obviously True's head being larger than his body is making his body use

up glucose

and glycogen too quickly. And his smaller body cannot store enough glycogen to

keep his

blood sugar levels up. Feeding him every 3 hours is one way to handle it, but

has anyone

suggested a feeding tube so you don't have to do that? With a feeding tube, he

can be

hooked up to a pump all night long so you and he can sleep through the night and

get the

rest that you need. Max had nighttime hypoglycemia for a long time and that

pump was a

lifesaver.

As for the ulcers, welcome to the club. Max has had and still does get ulcers

in his

stomach. They make him reflux, vomit, hiccup, and all sorts of things.

Currently he takes

Protonix, a proton pump inhibitor, twice a day to turn off the pumps that

produce the acid.

He has been on Zantac and Pepcid also for neutralizing the acid, but he cannot

take the

Protonix and Pepcid together or it neutralizes the effects of the Pepcid. He

has also had

an H Pylori infection several times and been quite sick from that.

You definitely need more help in managing True's blood sugars. I hope that

something I

have written will help you a little bit. Or at least get you thinking and

considering

alternatives. The other advantage to the gastrostomy tube is that if True is

not eating

well, you can just do a bolus feed and make up for what he has not eaten and

stablize him

so he does not crash.

I also think that once he gains more weight and his body catches up a bit with

his head, he

will stablize a bit. has just gone through this with her 2.5 year old

son Ian. He

was so underweight that he could not maintain his blood sugars. Now he has a

g-tube

and has gained weight and his BS are stable.

Jodi Z

[Guest guest]

Hi Deb,

How blessed those children are to have you and your husband. As an

adopted child myself, and one who almost adopted 5 siblings I can

see true angels on earth by just hearing of your wonderful family.

My child has precocious puberty, mild cp and tight heal cords and

short stuture and is abdomenlly overweigth. We live in Michigan.

She was recently seen by Dr. H who sees many of the kids on this

listserv. Our appointment was on Monday, Feb 09, and we still do not

have results because my daughter has been making doctors scratch

their heads for years!

They feel something else is wrong with her, so we were asked to

stay a full week so they could run every test they could think of.

We did not leave till that Saturday, Feb 14, so a one day visit

ended up 8 days since we got there on the 7th!

I was looking at the things your kids have and I will look that up

on the web page to see if any of it may match ita who just

turned 9.

Nice to meet you via cyber space,

AvaMarie

>

>

> 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 - well, welcome to our group. You certainly have had your share

of medical experiences - but, it would sound as if you are the best

person to deal with it all. I commend you for your thoughtfulness,

love and dedication to your children - it is obvious you are well-

versed with their care. It is a pleasure to meet you.

As Jodi Z mentioned, my son Ian is 2.5 and has had unstable blood

sugars for probably 6 months - but, with confirmed accuracy in the

last several months. Ian's head size began in the 97th percentile

with his body (weight and height) being below the 3rd. He is now

starting to " even out " - with his head now in the 80th percentile,

height in the 3rd/5th and his weight below the 3rd. Although his

weight sounds great compared to others at 23 lbs, the fact that his

head is so large makes up for the discrepancy and with this causes

his blood sugars to be more difficult to manage when they get " out

of whack " . Ian just received a gastrostomy tube and we have had

better success maintaining his b/s. I've occasionaly caught him in

the low 80's - but, that is significantly better than before. Yes,

we too have had low blood sugars and at one point my son too was

unresponsive at a level of 33. It was very scary.

I hope you will continue your research with the MAGIC Foundation. I

have found them to be a wealth of information. And, of course, we

are always happy to try to answer your questions and support you in

any way we can. Thank you for taking the time to introduce yourself

and feel comfortable enough to share your thoughts.

- H ()

>

>

> 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/)

>

>

>

>

>