Introduction

[Guest guest]

GOLLY,=====I am sorry its been so rough on you all. Those ice storms are the

pits to have on top of other health issues. I do home they will improve with

the Home health care ..maybe that will also help you some. Great wishes

coming at ya!!

LOVE & HUGS, GrandmomBEV

Introduction

Hi all,

Very glad to have found this support group. I have 2 children, Josh is 12

w/CF and Rebekah is 6 w/o CF. Things have been crazy around here lately.

The day before Thanksgiving Josh had to be admitted for a blockage. It was

tough, he had nothing to eat for nearly 5 days while go-lightly was running

through him. While he was going through that, he had a bronch clean out and

started on his IV meds. We couldn't get home due to the ice storm. Finally

made it home and have one more week of IV meds to go. Thank goodness for

home health services.

Tammy in NC

[Guest guest]

Tammy,

Welcome to this list. Will Josh be finished his IV's by x-mas? Hope its

all smooth sailing from here.

(Australia)

Introduction

Hi all,

Very glad to have found this support group. I have 2 children, Josh

is 12

w/CF and Rebekah is 6 w/o CF. Things have been crazy around here

lately.

The day before Thanksgiving Josh had to be admitted for a blockage. It

was

tough, he had nothing to eat for nearly 5 days while go-lightly was

running

through him. While he was going through that, he had a bronch clean out

and

started on his IV meds. We couldn't get home due to the ice storm.

Finally

made it home and have one more week of IV meds to go. Thank goodness

for

home health services.

Tammy in NC

[Guest guest]

Tammy,

Welcome to this list. Will Josh be finished his IV's by x-mas? Hope its

all smooth sailing from here.

(Australia)

Introduction

Hi all,

Very glad to have found this support group. I have 2 children, Josh

is 12

w/CF and Rebekah is 6 w/o CF. Things have been crazy around here

lately.

The day before Thanksgiving Josh had to be admitted for a blockage. It

was

tough, he had nothing to eat for nearly 5 days while go-lightly was

running

through him. While he was going through that, he had a bronch clean out

and

started on his IV meds. We couldn't get home due to the ice storm.

Finally

made it home and have one more week of IV meds to go. Thank goodness

for

home health services.

Tammy in NC

[Guest guest]

Tammy,

Welcome to this list. Will Josh be finished his IV's by x-mas? Hope its

all smooth sailing from here.

(Australia)

Introduction

Hi all,

Very glad to have found this support group. I have 2 children, Josh

is 12

w/CF and Rebekah is 6 w/o CF. Things have been crazy around here

lately.

The day before Thanksgiving Josh had to be admitted for a blockage. It

was

tough, he had nothing to eat for nearly 5 days while go-lightly was

running

through him. While he was going through that, he had a bronch clean out

and

started on his IV meds. We couldn't get home due to the ice storm.

Finally

made it home and have one more week of IV meds to go. Thank goodness

for

home health services.

Tammy in NC

[Guest guest]

Hi Tammy,

Welcome to our group. I also have a son , he's 14 and also has CF.

seems to be a common name on this list. I hope all get's back to

normal soon.

Re: Introduction

> Thanks for all of the warm welcomes. Josh has to go back to UNC on 12/23

and

> have his IV removed. He is so looking forward to that (and so am I).

> Tammy

>

>

>

[Guest guest]

In a message dated 4/27/2003 1:15:30 AM Central Daylight Time,

govriel@... writes:

> I live in Missouri, with my Irish Wolfhound, Huck, my son, Jim, and roomie

> Gayle. I used to be very active; I love to garden and fish. Now, I am the

> family couch weight, and doing a fine job.

>

Hi Lynn:

Where in Missouri do you live? Where are you being treated? I'm from

Joplin.

Terri

[Guest guest]

> 1. Since being diagnosed and beginning to take these medications, I

> have the

> most unreasonable, however transient, emotional/mental state. For

> instance I

> am cranky, argumentative and sometimes feel psychotic (last night, I

> tell

> you true, I was scared of an ice cream sundae). Will this continue?

> I have

> only been diagnosed and treated for a week.

Have you read the letter to family members? Most of us here (and our

families) have suffered from the emotional side effects of GD. BTW, I

assume you're using the word psychotic collocquially. My BIL is a

psychiatrist who's seen a rare condition called Graves' Psychosis.

Doesn't sound like you have it though, just Graves' Rage and other

irritation and anxiety. (About your ice cream cone - I could barely walk

the 6 feet to my car or go the basement at night.) It WILL go away. Here

are some ideas: Start a laugh folder - clip cartoons and columns into an

album, buy/rent some great belly-laugh movies. And/or, if you can do this

physically and financially, start taking a yoga class. Though there are

some good do it yourself videos out there.

> 2. If the PTU works, is that the " best " treatment, that is, does it

> carry

> the least side effects?

PTU, unllike Tap, is known as a carcinogen. OTOH, pregnant and nursing

women can take it safely because it doesn't cross the placenta. If you

can handle the 3x-a-day, even-spacing dosing and the taste and you're not

reacting to it, I would stay on it and contemplate switching when you're

more stable if it really bothers you.

>

> 3. Does someone have " bad " and " good " days? Yesterday I felt like

> warmed

> over caca, but today I feel much better. Will there be a progress of

> sorts

> as I am treated?

Again, you WILL get better. Just do be sure to have regular monitoring -

no more than 6-8 week intervals - including a TSH as well as the FREE T4.

How high a dose of PTU are you on? And are any of your other medications

beta blockers? Also, do you have any other conditions necessitating the

other meds you're on? As time goes by, most people are able to be weaned

off the beta blockers while also lowering their dose of ATDs. It's best

to reduce ATDs very gradually, in no larger than 50 mg. (for Tap)

increments though if your levels drop dramatically for your first

bloodwork a larger reduction this time may be in order. Feel free to

share your labs as well as the normal ranges your lab give.

Take care, Fay

________________________________________________________________

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[Guest guest]

Graves is a terrible disease, yes, some of those symptoms your're describing

sould very familiar and common. Ask your Doctor soon about the things that are

really uncomfortable. Six years ago I was treated for Graves with radioactive

I-131, that has some weird side effects also., now I'm hypothyroid, too low and

get very fatitiqued , depressed and all those hypo symptoms. the Graves

Opthylmic disease, dry , puffy and scratchy eyes is starting too. Graves never

goes away, only into remission once a person can get regulated with their

thyriod hormone, in my case it always was levoxyl, now Doctor upped it to 112mcg

which is still too low , Im not feeling any better. On antidepressants and

Klonpin (like Ativan, also). That makes a person jittery also if the doses

aren't given close enough together. Best of success to you, in

California

Introduction

Hello Everyone,

My name is Lynn and I have just been diagnosed with Graves' Disease. I have

been looking through web pages this evening and trying to get an idea of

what to expect. I am not sure how long this condition has been present in my

body but am suspecting for a good while as my diagnosis came from the

treatment of arterial fibrillation and many of the other symptoms have been

around for years. I am taking PTU, Inderal, Coumatin, K, and have ativan. I

have a couple questions if anyone feels like answering.

1. Since being diagnosed and beginning to take these medications, I have the

most unreasonable, however transient, emotional/mental state. For instance I

am cranky, argumentative and sometimes feel psychotic (last night, I tell

you true, I was scared of an ice cream sundae). Will this continue? I have

only been diagnosed and treated for a week.

2. If the PTU works, is that the " best " treatment, that is, does it carry

the least side effects?

3. Does someone have " bad " and " good " days? Yesterday I felt like warmed

over caca, but today I feel much better. Will there be a progress of sorts

as I am treated?

I live in Missouri, with my Irish Wolfhound, Huck, my son, Jim, and roomie

Gayle. I used to be very active; I love to garden and fish. Now, I am the

family couch weight, and doing a fine job.

Best wishes,

lynn

[Guest guest]

Graves is a terrible disease, yes, some of those symptoms your're describing

sould very familiar and common. Ask your Doctor soon about the things that are

really uncomfortable. Six years ago I was treated for Graves with radioactive

I-131, that has some weird side effects also., now I'm hypothyroid, too low and

get very fatitiqued , depressed and all those hypo symptoms. the Graves

Opthylmic disease, dry , puffy and scratchy eyes is starting too. Graves never

goes away, only into remission once a person can get regulated with their

thyriod hormone, in my case it always was levoxyl, now Doctor upped it to 112mcg

which is still too low , Im not feeling any better. On antidepressants and

Klonpin (like Ativan, also). That makes a person jittery also if the doses

aren't given close enough together. Best of success to you, in

California

Introduction

Hello Everyone,

My name is Lynn and I have just been diagnosed with Graves' Disease. I have

been looking through web pages this evening and trying to get an idea of

what to expect. I am not sure how long this condition has been present in my

body but am suspecting for a good while as my diagnosis came from the

treatment of arterial fibrillation and many of the other symptoms have been

around for years. I am taking PTU, Inderal, Coumatin, K, and have ativan. I

have a couple questions if anyone feels like answering.

1. Since being diagnosed and beginning to take these medications, I have the

most unreasonable, however transient, emotional/mental state. For instance I

am cranky, argumentative and sometimes feel psychotic (last night, I tell

you true, I was scared of an ice cream sundae). Will this continue? I have

only been diagnosed and treated for a week.

2. If the PTU works, is that the " best " treatment, that is, does it carry

the least side effects?

3. Does someone have " bad " and " good " days? Yesterday I felt like warmed

over caca, but today I feel much better. Will there be a progress of sorts

as I am treated?

I live in Missouri, with my Irish Wolfhound, Huck, my son, Jim, and roomie

Gayle. I used to be very active; I love to garden and fish. Now, I am the

family couch weight, and doing a fine job.

Best wishes,

lynn

[Guest guest]

Hi, Vicky. Welcome to our group. It's great to have grandparents

share their experiences and concerns. We have several others, too.

Tell us more about Paige. You can brag all you want here and we love

to read it.

Jodi

> Hello...

> My name is Vicky. My grand daughter, Paige, has RSS and my daughter

> suggested that I join your group.

>

> She is just the sweetest child ever, just ask me... the Granny!!!

>

> Warm Smiles

> Vicky

[Guest guest]

Hi, Vicky. Welcome to our group. It's great to have grandparents

share their experiences and concerns. We have several others, too.

Tell us more about Paige. You can brag all you want here and we love

to read it.

Jodi

> Hello...

> My name is Vicky. My grand daughter, Paige, has RSS and my daughter

> suggested that I join your group.

>

> She is just the sweetest child ever, just ask me... the Granny!!!

>

> Warm Smiles

> Vicky

[Guest guest]

Hi Vicki,

My name is Pat, and I am g-ma to . He will be 18 months of age on

the 21st of this month, and is the light of our lives.

Calling sweet at this point would be stretching the truth a bit,

but I much prefer the feisty little guy he has become to the bump-on-a-log

he used to be. Our has developed a temper, and we have to warn just

about everyone that if you tick him off, he has no qualms about biting,

scratching, or pinching you! Although I have to say that the biting has

tapered off some! LOL

This is a great site. I have learned tons of information that has been

helpful for , and the people here have been extremely supportive

through his many hospitalizations. Being a grandparent is wonderful, isn't

it?

Pat (g-ma to , RSS, 17 months, 15# 8oz, 26 " , Zantac, GT)

[Guest guest]

Hi Vicki,

My name is Pat, and I am g-ma to . He will be 18 months of age on

the 21st of this month, and is the light of our lives.

Calling sweet at this point would be stretching the truth a bit,

but I much prefer the feisty little guy he has become to the bump-on-a-log

he used to be. Our has developed a temper, and we have to warn just

about everyone that if you tick him off, he has no qualms about biting,

scratching, or pinching you! Although I have to say that the biting has

tapered off some! LOL

This is a great site. I have learned tons of information that has been

helpful for , and the people here have been extremely supportive

through his many hospitalizations. Being a grandparent is wonderful, isn't

it?

Pat (g-ma to , RSS, 17 months, 15# 8oz, 26 " , Zantac, GT)

[Guest guest]

Thanks so much to everyone for the wonderful welcomes. I am learning so much

and I haven't even had to try!!!

Being a grand parent is great, yes it is Pat.

Paige, shows her temper when you call her a baby...... she says... I'm not a

baby........ and looks at me really stern.

Vicky

Granny to Paige

Re: Introduction

Hi Vicki,

My name is Pat, and I am g-ma to . He will be 18 months of age on

the 21st of this month, and is the light of our lives.

Calling sweet at this point would be stretching the truth a bit,

but I much prefer the feisty little guy he has become to the bump-on-a-log

he used to be. Our has developed a temper, and we have to warn just

about everyone that if you tick him off, he has no qualms about biting,

scratching, or pinching you! Although I have to say that the biting has

tapered off some! LOL

This is a great site. I have learned tons of information that has been

helpful for , and the people here have been extremely supportive

through his many hospitalizations. Being a grandparent is wonderful, isn't

it?

Pat (g-ma to , RSS, 17 months, 15# 8oz, 26 " , Zantac, GT)

[Guest guest]

Hi Vicki,

I love being a grandparent, but then again, I love being a mom, so I

guess it's not surprising! LOL

I have two grandkids. Aidan will be 3 on July 26th, is non-RSS, but

very small and petite at 26# and 34 " . Her mom, my oldest child, , has

her own apt, but she works nights right now, so Aidan spends a lot of time

here with us, usually 4-5 nights a week. On her off-nights, takes

Aidan home with her.

lives with his mom, at her mom's house. Having him here with us

is more sporadic, but any and all time is greatly enjoyed. I, also, enjoy

being able to help out with researching information, doing PT, OT, or ST. We

try to work as a team, (mom, dad, m. g-ma, and p. g-ma) to make sure that

is covered at all times with someone that knows what to do.

Do you get to spend a lot of time with Paige? I can't wait until my

g-kids are older and we can do more things together.

Pat (g-ma to , RSS, 17.5 months, 15# 7oz, 26.5 " , Zantac, GT)

[Guest guest]

Hi Vicky,

I wish I was good with the computer! LOL My hubby keeps telling me that

he can fix anything I might do wrong, so just try it! I'm scared to death of

erasing something I shouldn't, or changing something that makes the whole

system crash! LOL

I LOVE gardening! In the front of my house, I have a small 6'X10' pond

on one side of my porch, and on the other side, I'm working on a three-level

pond, landscaping included. The sound of running water is SO refreshing in

the heat of the summer.

It is not unusual for people from the site to email privately,

especially when it's just to chat. If you would like to do so, my personal

address is

pcpets@...

Then we could share the secrets of how to spoil the grandkids! LOL How

old are Chase, Brooklyn and ?

Pat (g-ma to , RSS, 17.5 months, 15# 7oz, 26.5 " , Zantac, GT)

[Guest guest]

Hi Pat....

I get to spend quite a bit of time with Paige. Her mother (my daughter)

is also on this list (so I have to watch what I say... would'nt want her to

think that I spoil my grand kids or anything like that when they are with me...

LOL).

Paige is ... how do I put it? she is just one happy kid. She's going to be 3

in December .... I also have 3 other wonderful g-kids, Chase and Brooklyn.....

and . I am one lucky lady!!

I live alone, work full time and enjoy gardening and making computer generated

graphics.

Warm Smiles

Vicky

Re: Introduction

Hi Vicki,

I love being a grandparent, but then again, I love being a mom, so I

guess it's not surprising! LOL

I have two grandkids. Aidan will be 3 on July 26th, is non-RSS, but

very small and petite at 26# and 34 " . Her mom, my oldest child, , has

her own apt, but she works nights right now, so Aidan spends a lot of time

here with us, usually 4-5 nights a week. On her off-nights, takes

Aidan home with her.

lives with his mom, at her mom's house. Having him here with us

is more sporadic, but any and all time is greatly enjoyed. I, also, enjoy

being able to help out with researching information, doing PT, OT, or ST. We

try to work as a team, (mom, dad, m. g-ma, and p. g-ma) to make sure that

is covered at all times with someone that knows what to do.

Do you get to spend a lot of time with Paige? I can't wait until my

g-kids are older and we can do more things together.

Pat (g-ma to , RSS, 17.5 months, 15# 7oz, 26.5 " , Zantac, GT)

[Guest guest]

Dear Vicky:

My name is Donna and I am 'Granny' to Alyssa age 19 months. She is the

light of our life and every inch a fighter and independent. She is loving,

funny, smart, and.......does this remind you of your grandchild??!!

Smiles back at you.

Donna

Introduction

> Hello...

> My name is Vicky. My grand daughter, Paige, has RSS and my daughter

> suggested that I join your group.

>

> She is just the sweetest child ever, just ask me... the Granny!!!

>

> Warm Smiles

> Vicky

>

>

>

>

>

>

>

[Guest guest]

Dear Vicky:

My name is Donna and I am 'Granny' to Alyssa age 19 months. She is the

light of our life and every inch a fighter and independent. She is loving,

funny, smart, and.......does this remind you of your grandchild??!!

Smiles back at you.

Donna

Introduction

> Hello...

> My name is Vicky. My grand daughter, Paige, has RSS and my daughter

> suggested that I join your group.

>

> She is just the sweetest child ever, just ask me... the Granny!!!

>

> Warm Smiles

> Vicky

>

>

>

>

>

>

>

[Guest guest]

Hi,

I also have a Colin (but only one L) with RSS. Colin has a twin

sister, Hayden who is not affected. Welcome to the group! I know you

will find a lot of support here.

Colin (RSS, g-tube) and Hayden - 33 mo.

[Guest guest]

,

I am sorry to hear that your doctors do not take you seriously just

because you are a young mom. We have other young moms on this

listsereve and I hope they have not faced what you are facing. BUT

if it helps at all, many of us, even us older moms (I'm now 47) have

faced doctors who have not taken us seriously or blamed the mom if

the child was diagnosed as failure to thrive. My own RSS son, Max,

is now 15, but I so clearly remember that day when he was 2 months

old,put in the hospital for FTT and they took him away from me

because they wanted to " see if there was a bonding issue. " And he

was my second child!

You have to learn to be strong and well-educated in your suspected

diagnoses. That's just the way of the world. If you come across as

self-assured, it will make doctors be more likely to listen to you.

Perhaps you should post a message to Chrissy. She is a young mom

with three kids and her daughter is near Collin's age and has RSS.

What makes you believe that Collin has RSS other than he is FTT?

Have you checked out the Magic Foundation website to look at the

characteristics? It's www.magicfoundation.org. It's a great support

group for all of us.

If you have any questions, please post them. Almost all questions

are answered by someone. This is the best bunch of people in the

world! Welcome to our group.

Jodi

[Guest guest]

HI Jody,

thank you for the welcome. Collin is hypoglacemic if he doesn't eat

he shakes soo bad and stutters and gets very owly so to speak i have

taken him to the ped. and said my son is hypoglacemic and he said

ohhhh it just takes some kids longer to wake up in the morning and

get their bearings than others (it mostly happens right after he's

been sleeping a while)...so i did some research on the internet and

started trying to get him something to eat all the time (IF i can

get him to eat) and it's been working, the shaking has stopped but if

he doesn't get something right before bed and AS SOON as he wakes up

the shaking resumes.....lol...dang it i knew what i was talking about

but the doctor still doesn't believe me *rolling eyes*.

He was very small at birth (6 lbs) and was born on his due date.

He has the classic triangular face

he has Cafe-au-lait spots on his face and butt cheek...lol

He has the shortest attention span you've even seen of ANY 2 yr

old...lol..even the psychologist here said that she's only met one

other child in 30 yrs that is as wild as him.

The therapist i mentioned above works with other RSS kids in the

state and said that collin looks just like them and has a lot of the

same issues as them. She called today and got us in with a pediatric

geneticist....YAAAY!!! I guess i just needed to find someone with

clout huh?

He has always had reflux and at 5 wks had surgery for pyloric stenosis

HIs eyes (the white part) and eye lids are as blue as the sky

He has huge ears

Has one leg 1 at least an inch shorter than the other one

Eating has always been a struggle...he just has no appetite

He is always enemic and his skin is soo thin and he bruises soo easily

He also has the huge forehead and some really abnormal looking eyes

other than the bluishness (is that a word?? LOL)

He has a strange ridge on his forehead too

I know all of these aren't signs of RSS but some are...does anyone

know of anything diseases or syndromes that he might meet the

criterea of???

> ,

>

> I am sorry to hear that your doctors do not take you seriously just

> because you are a young mom. We have other young moms on this

> listsereve and I hope they have not faced what you are facing. BUT

> if it helps at all, many of us, even us older moms (I'm now 47)

have

> faced doctors who have not taken us seriously or blamed the mom if

> the child was diagnosed as failure to thrive. My own RSS son, Max,

> is now 15, but I so clearly remember that day when he was 2 months

> old,put in the hospital for FTT and they took him away from me

> because they wanted to " see if there was a bonding issue. " And he

> was my second child!

>

> You have to learn to be strong and well-educated in your suspected

> diagnoses. That's just the way of the world. If you come across

as

> self-assured, it will make doctors be more likely to listen to

you.

> Perhaps you should post a message to Chrissy. She is a young mom

> with three kids and her daughter is near Collin's age and has RSS.

>

> What makes you believe that Collin has RSS other than he is FTT?

> Have you checked out the Magic Foundation website to look at the

> characteristics? It's www.magicfoundation.org. It's a great

support

> group for all of us.

>

> If you have any questions, please post them. Almost all questions

> are answered by someone. This is the best bunch of people in the

> world! Welcome to our group.

>

> Jodi

[Guest guest]

, try taking a peek at the photos section of the group...

chances are you will find some kids that look like your cutie.

regarding the hypoglycaemia... a lot of docs can be hard to convince

as " traditionally " it was only thought possible to occur in two ways -

a diabetic on insulin (blood sugar drops in response to the insulin)

and pancreatic tumors producing too much of the body's own insulin.

DO NOT let him brush you off, the only way to be sure is to get hold

of a glucometer and test regularly. Where are you? In Australia I can

pick one up for $50-100 but sometimes you people can get them through

insurance? I know your paed doesn't believe you, maybe you can

convince him to help you get one " for your own peace of mind " ?

Does your paed have other ideas as to why he shakes and gets drowsy?

(and why it improves after he eats?), and how would he feel if you

decided to take legal action against him later for failing to listen

to you, something goes wrong and you hold him accountable? Fear of

litigation can be a tool to get what you want.

((HUGS))

Steph - mum to Darcy 3.10 RSS various minor physical malformations

and Tessa 8 (and apologies I think I am being a little agressive this

week Drs are really driving me nuts)

> > ,

> >

> > I am sorry to hear that your doctors do not take you seriously

just

> > because you are a young mom. We have other young moms on this

> > listsereve and I hope they have not faced what you are facing.

BUT

> > if it helps at all, many of us, even us older moms (I'm now 47)

> have

> > faced doctors who have not taken us seriously or blamed the mom

if

> > the child was diagnosed as failure to thrive. My own RSS son,

Max,

> > is now 15, but I so clearly remember that day when he was 2

months

> > old,put in the hospital for FTT and they took him away from me

> > because they wanted to " see if there was a bonding issue. " And

he

> > was my second child!

> >

> > You have to learn to be strong and well-educated in your

suspected

> > diagnoses. That's just the way of the world. If you come across

> as

> > self-assured, it will make doctors be more likely to listen to

> you.

> > Perhaps you should post a message to Chrissy. She is a young mom

> > with three kids and her daughter is near Collin's age and has RSS.

> >

> > What makes you believe that Collin has RSS other than he is FTT?

> > Have you checked out the Magic Foundation website to look at the

> > characteristics? It's www.magicfoundation.org. It's a great

> support

> > group for all of us.

> >

> > If you have any questions, please post them. Almost all

questions

> > are answered by someone. This is the best bunch of people in the

> > world! Welcome to our group.

> >

> > Jodi

[Guest guest]

Hi

My name is Pat, and I am g-ma to . RSS was mentioned when B was in

the NICU, and he was officially diagnosed at 3 months of age.

I think Jodi made a good point when she said that you need to come across as

self-assured, and knowledgeable. You've definitely come to the right place

to learn. The people here are some of the most knowledgeable, supportive,

wonderful people I've ever met!

B is 100% tube fed, so his hypo-g isn't usually a problem, but others here

on the site have recommended using corn starch mixed with some kind of

drink, to help level the blood sugar at night. Since I've never had to do

this, hopefully someone that does, can give you suggestions on how much corn

starch to use, and what to mix it with.

Welcome to the most informative, supportive site on the web. It is filled

with a ton of warm supportive friends.

Pat (g-ma to , RSS, 20 months, 18# 2oz, 29 " , Prevacid, Zantac,

Singulair, GT)

[Guest guest]

,

If Collin has such severe hypoglycemia, why aren't the doctors

recommending that he be tube fed overnight, or anytime he is

sleeping? I would bet anything that he behavior is related to the

hypo-g issue. But many RSS kids do have some degree of ADHD, so

don't discount that, either. I think that the ADHD is related

somehow to the hypoglycemia. That is a gut feeling and I am a

special education teacher.

Tube feeding is really easy and will ensure that Collin's bloodsugar

does not drop. Many RSS kids have gone this route. As I think I

told you, even Max is back on those feedings at the age of 15. He is

a much happier teen in the morning now.

Since you are telling me that Collin wakes up with low bloodsugar,

you should ALWAYS have glucose gel onhand. It can be purchased at

the drugstore where they sell the supplies for diabetics. When you

suspect that his bloodsugar is too low, you can squirt it into the

space between the cheek and teeth. It is absorbed into the cheek and

works almost right away, even if he spits out what is left. Then you

can feed him and get those levels up again. Also, you should mix

cornstarch into whatever he drinks before bed. That will take longer

to break down in his system and help stabilize him. I think that at

his age you put in 1 tablespoon per 8 ounces of whatever you are

giving him.

I hope this helps. Please feel free to ask me anything else.

Jodi