Re: New Member in Columbus OH- Question about Hypoglycemia

[Guest guest]

Steve - I am on leave from MAGIC right now while I try and finish

writing the Guidebook. But I quick wanted to dash you a note. I

would recommend that you email our division consultant for Families

at MAGIC for our RSS/SGA division, Katy. She is at rss2katy@

hotmail.com. She can assist you with accurate information for you,

and provide some additional documents that might help you. Clearly,

if you are already giving him the cornstarch, you may have already

read some of the documents. Good job!!!! You are doing things

right, and pat yourself on the back. If the ketone sticks are

showing negative or trace, in the morning, you are probably fine.

At his age, there will probably be trace, simply because he is

sleeping a long time. If he is severely underweight, then you may

need to try and wake him around midnight or 11pm, depending on your

bedtime, to try and get some extra calories into him.

There is an old convention presentation on " How to Get an

Underweight Child to Gain Weight. " Can't remember the number, but

MAGIC can look it up on the library log. Call them tollfree. It

should have some good tips as well.

Daytime, just remember those small frequent snacks. Put a handful

of goldfish if he sitting or playing nearby; carrots with hummus;

pinto beans are great calories and protein, etc.

Hope this helps! Jenn

> Hi, my name is Steve and we live in Columbus OH. My 14mo old son

> Zachary was recently diagnosed with RSS although we have suspected

> it for several months. I joined this group a few months ago and

> decided I should finally introduce myself. I guess the delay was

> just accepting that Zachary is RSS. We've been through the round

of

> Dr's. including Genetics, Endo, GI and later this week

Nutrionist.

> Our Pediatrician says definitely RSS and so does the Geneticist.

The

> Endo said something is definitely wrong, doesn't know what but

not

> RSS.

>

> We joined Magic a few months ago as well and just recently

contacted

> Dr. Harbisons office to see if we can get in.

>

> After reading everything I can our main concern right now is

> preventing hypoglycemia. Zachary eats table foods but never a lot

> and we're convinced he's not getting enough. We just started

giving

> him a bottle of pedisure mixed with cornstarch in his crib when he

> goes down at night. Not sure when he drinks it but when he got up

> this morning the bottle was empty.

>

> We bougth some keytone sticks but aren't really sure if we are

> getting accurate results or at what point we should be concerned.

He

> wears cloth diapers and we are trying to rub and push the stick in

> the diaper.

>

> We have tested him the last several days and get results of

negative

> or trace. My questions are:

> How accurate is the test?

> Should a trace amount concern us?

> How do we get a better sample to test?

> How often should we test? Just in the morning, or through out the

> day?

> What are some of the symptoms of hypoglycemia that we should be

> worried about?

>

> I appreciate any suggestions you have. Thank you for your help

>

> Steve

[Guest guest]

Hi Steve,

I see you have had answeres to you questions so just let me say WELCOME

TO OUR GREAT BIG RSS/SGA " FAMILY " OF SUPPORT!! feel free to ask any

questions!! i have a 4 1/2yr old son christopher with rss.

jodie c

[Guest guest]

Hello Steve. Nice to see another Ohioan on here. As a matter of

fact, I am right down the road from you in Newark. I have a 3 year

old son, , who has RSS. We frequent Columbus Children's way

too much! ) I keep saying we need to just move closer. Anyway, I

just wanted to welcome you to the group and if you want to contact

someone that lives near you just email me. My email is rssboy2002@

yahoo.com, but don't put a space between the @ sign. It won't show

up here completely unless we do this. Anyway, I would love to talk

to you and your wife. What doctors do you see at CCH? needs

to get on board with an endo., but after a recent surgery and we saw

one during a consult I was not happy! He was arrogant and said he

was an RSS expert! HA! Anyway, we are scheduled to see a different

endo there next week.

Take care,

Jodi R.

One of many Jodi(e)'s on here! )

, 3, RSS, restricted lungs, J tube, reflux, etc.

> Hi, my name is Steve and we live in Columbus OH. My 14mo old son

> Zachary was recently diagnosed with RSS although we have suspected

> it for several months. I joined this group a few months ago and

> decided I should finally introduce myself. I guess the delay was

> just accepting that Zachary is RSS. We've been through the round

of

> Dr's. including Genetics, Endo, GI and later this week Nutrionist.

> Our Pediatrician says definitely RSS and so does the Geneticist.

The

> Endo said something is definitely wrong, doesn't know what but not

> RSS.

>

> We joined Magic a few months ago as well and just recently

contacted

> Dr. Harbisons office to see if we can get in.

>

> After reading everything I can our main concern right now is

> preventing hypoglycemia. Zachary eats table foods but never a lot

> and we're convinced he's not getting enough. We just started

giving

> him a bottle of pedisure mixed with cornstarch in his crib when he

> goes down at night. Not sure when he drinks it but when he got up

> this morning the bottle was empty.

>

> We bougth some keytone sticks but aren't really sure if we are

> getting accurate results or at what point we should be concerned.

He

> wears cloth diapers and we are trying to rub and push the stick in

> the diaper.

>

> We have tested him the last several days and get results of

negative

> or trace. My questions are:

> How accurate is the test?

> Should a trace amount concern us?

> How do we get a better sample to test?

> How often should we test? Just in the morning, or through out the

> day?

> What are some of the symptoms of hypoglycemia that we should be

> worried about?

>

> I appreciate any suggestions you have. Thank you for your help

>

> Steve

[Guest guest]

Thanks to everyone who replied. I appreciate all the advise and

direction.

Jodi - I emailed you privately and then read your post. I laughed

when you asked about an endo because that's a question I have..

Where do you find a good endo - maybe we have the same guy .. He's

the only who says Zachary isn't RSS..

> > Hi, my name is Steve and we live in Columbus OH. My 14mo old

son

> > Zachary was recently diagnosed with RSS although we have

suspected

> > it for several months. I joined this group a few months ago and

> > decided I should finally introduce myself. I guess the delay

was

> > just accepting that Zachary is RSS. We've been through the

round

> of

> > Dr's. including Genetics, Endo, GI and later this week

Nutrionist.

> > Our Pediatrician says definitely RSS and so does the Geneticist.

> The

> > Endo said something is definitely wrong, doesn't know what but

not

> > RSS.

> >

> > We joined Magic a few months ago as well and just recently

> contacted

> > Dr. Harbisons office to see if we can get in.

> >

> > After reading everything I can our main concern right now is

> > preventing hypoglycemia. Zachary eats table foods but never a

lot

> > and we're convinced he's not getting enough. We just started

> giving

> > him a bottle of pedisure mixed with cornstarch in his crib when

he

> > goes down at night. Not sure when he drinks it but when he got

up

> > this morning the bottle was empty.

> >

> > We bougth some keytone sticks but aren't really sure if we are

> > getting accurate results or at what point we should be

concerned.

> He

> > wears cloth diapers and we are trying to rub and push the stick

in

> > the diaper.

> >

> > We have tested him the last several days and get results of

> negative

> > or trace. My questions are:

> > How accurate is the test?

> > Should a trace amount concern us?

> > How do we get a better sample to test?

> > How often should we test? Just in the morning, or through out

the

> > day?

> > What are some of the symptoms of hypoglycemia that we should be

> > worried about?

> >

> > I appreciate any suggestions you have. Thank you for your help

> >

> > Steve

[Guest guest]

Has completely recovered - hand and gut?

> > Hi, my name is Steve and we live in Columbus OH. My 14mo old son

> > Zachary was recently diagnosed with RSS although we have

suspected

> > it for several months. I joined this group a few months ago and

> > decided I should finally introduce myself. I guess the delay was

> > just accepting that Zachary is RSS. We've been through the round

> of

> > Dr's. including Genetics, Endo, GI and later this week

Nutrionist.

> > Our Pediatrician says definitely RSS and so does the Geneticist.

> The

> > Endo said something is definitely wrong, doesn't know what but

not

> > RSS.

> >

> > We joined Magic a few months ago as well and just recently

> contacted

> > Dr. Harbisons office to see if we can get in.

> >

> > After reading everything I can our main concern right now is

> > preventing hypoglycemia. Zachary eats table foods but never a

lot

> > and we're convinced he's not getting enough. We just started

> giving

> > him a bottle of pedisure mixed with cornstarch in his crib when

he

> > goes down at night. Not sure when he drinks it but when he got up

> > this morning the bottle was empty.

> >

> > We bougth some keytone sticks but aren't really sure if we are

> > getting accurate results or at what point we should be concerned.

> He

> > wears cloth diapers and we are trying to rub and push the stick

in

> > the diaper.

> >

> > We have tested him the last several days and get results of

> negative

> > or trace. My questions are:

> > How accurate is the test?

> > Should a trace amount concern us?

> > How do we get a better sample to test?

> > How often should we test? Just in the morning, or through out

the

> > day?

> > What are some of the symptoms of hypoglycemia that we should be

> > worried about?

> >

> > I appreciate any suggestions you have. Thank you for your help

> >

> > Steve

[Guest guest]

Hi ,

Yup, is doing great right now. Hand looks good, but it still

seems to be a little tender. Are you talking about is his gut back

to normal after surgery? Are they ever back to normal? ) I guess

he is back to the way he was before we went in. Still gagging,

spitting up, refluxing, waking up at night with belly pain.......)

How is Emerence doing now? Did she get over her creeping crud yet?

I see you got a new job! Congrats on that, too. Thank you for asking

about ! )

Jodi R.

> > > Hi, my name is Steve and we live in Columbus OH. My 14mo old

son

> > > Zachary was recently diagnosed with RSS although we have

> suspected

> > > it for several months. I joined this group a few months ago

and

> > > decided I should finally introduce myself. I guess the delay

was

> > > just accepting that Zachary is RSS. We've been through the

round

> > of

> > > Dr's. including Genetics, Endo, GI and later this week

> Nutrionist.

> > > Our Pediatrician says definitely RSS and so does the

Geneticist.

> > The

> > > Endo said something is definitely wrong, doesn't know what but

> not

> > > RSS.

> > >

> > > We joined Magic a few months ago as well and just recently

> > contacted

> > > Dr. Harbisons office to see if we can get in.

> > >

> > > After reading everything I can our main concern right now is

> > > preventing hypoglycemia. Zachary eats table foods but never a

> lot

> > > and we're convinced he's not getting enough. We just started

> > giving

> > > him a bottle of pedisure mixed with cornstarch in his crib when

> he

> > > goes down at night. Not sure when he drinks it but when he got

up

> > > this morning the bottle was empty.

> > >

> > > We bougth some keytone sticks but aren't really sure if we are

> > > getting accurate results or at what point we should be

concerned.

> > He

> > > wears cloth diapers and we are trying to rub and push the stick

> in

> > > the diaper.

> > >

> > > We have tested him the last several days and get results of

> > negative

> > > or trace. My questions are:

> > > How accurate is the test?

> > > Should a trace amount concern us?

> > > How do we get a better sample to test?

> > > How often should we test? Just in the morning, or through out

> the

> > > day?

> > > What are some of the symptoms of hypoglycemia that we should be

> > > worried about?

> > >

> > > I appreciate any suggestions you have. Thank you for your help

> > >

> > > Steve

[Guest guest]

Steve,

Ha, finding a good endo. scares me to death after that run in I had

recently. That is why I am going to see Dr H on the 21st of

October. She is the only one I trust to get the GH underway for

. And then, I don't even know if I will be able to trust

anyone local to manage it after Dr. H gets us started. May be going

to NY every three months like some of the others on here do. I'll

let you know what I think of the endo we are seeing on the 7th. GH

is just too important for me to be relying on someone that doesn't

know much about RSS. Dr. H is an endo. that just HAPPENS to

specialize in RSS. How lucky are we!? )

Jodi R.

> > > Hi, my name is Steve and we live in Columbus OH. My 14mo old

> son

> > > Zachary was recently diagnosed with RSS although we have

> suspected

> > > it for several months. I joined this group a few months ago

and

> > > decided I should finally introduce myself. I guess the delay

> was

> > > just accepting that Zachary is RSS. We've been through the

> round

> > of

> > > Dr's. including Genetics, Endo, GI and later this week

> Nutrionist.

> > > Our Pediatrician says definitely RSS and so does the

Geneticist.

> > The

> > > Endo said something is definitely wrong, doesn't know what but

> not

> > > RSS.

> > >

> > > We joined Magic a few months ago as well and just recently

> > contacted

> > > Dr. Harbisons office to see if we can get in.

> > >

> > > After reading everything I can our main concern right now is

> > > preventing hypoglycemia. Zachary eats table foods but never a

> lot

> > > and we're convinced he's not getting enough. We just started

> > giving

> > > him a bottle of pedisure mixed with cornstarch in his crib when

> he

> > > goes down at night. Not sure when he drinks it but when he got

> up

> > > this morning the bottle was empty.

> > >

> > > We bougth some keytone sticks but aren't really sure if we are

> > > getting accurate results or at what point we should be

> concerned.

> > He

> > > wears cloth diapers and we are trying to rub and push the stick

> in

> > > the diaper.

> > >

> > > We have tested him the last several days and get results of

> > negative

> > > or trace. My questions are:

> > > How accurate is the test?

> > > Should a trace amount concern us?

> > > How do we get a better sample to test?

> > > How often should we test? Just in the morning, or through out

> the

> > > day?

> > > What are some of the symptoms of hypoglycemia that we should be

> > > worried about?

> > >

> > > I appreciate any suggestions you have. Thank you for your help

> > >

> > > Steve

[Guest guest]

Steve,

I'm still trying to catch up on posts. Sorry for the delay in welcoming you and

your family. You have made a start in the right direction by joining Magic and

this group. I also see you have received answers to your questions - that's

great.

My daughter is 5 3/4 and is in kindergarten. She was diagnosed at 3 3/4

by a geneticist with RSS and a local endo at age 4 with RSS. Dr. Harbison,

however, does not think she is RSS, however, is treating her for growth failure

but not sure why. We are waiting blood test results to see what they have to

say.

B

5 3/4 and Kelli 3

snd2071 wrote:

Hi, my name is Steve and we live in Columbus OH. My 14mo old son

Zachary was recently diagnosed with RSS although we have suspected

it for several months. I joined this group a few months ago and

decided I should finally introduce myself. I guess the delay was

just accepting that Zachary is RSS. We've been through the round of

Dr's. including Genetics, Endo, GI and later this week Nutrionist.

Our Pediatrician says definitely RSS and so does the Geneticist. The

Endo said something is definitely wrong, doesn't know what but not

RSS.

We joined Magic a few months ago as well and just recently contacted

Dr. Harbisons office to see if we can get in.

After reading everything I can our main concern right now is

preventing hypoglycemia. Zachary eats table foods but never a lot

and we're convinced he's not getting enough. We just started giving

him a bottle of pedisure mixed with cornstarch in his crib when he

goes down at night. Not sure when he drinks it but when he got up

this morning the bottle was empty.

We bougth some keytone sticks but aren't really sure if we are

getting accurate results or at what point we should be concerned. He

wears cloth diapers and we are trying to rub and push the stick in

the diaper.

We have tested him the last several days and get results of negative

or trace. My questions are:

How accurate is the test?

Should a trace amount concern us?

How do we get a better sample to test?

How often should we test? Just in the morning, or through out the

day?

What are some of the symptoms of hypoglycemia that we should be

worried about?

I appreciate any suggestions you have. Thank you for your help

Steve