Re: New to the group - Sheila

[Guest guest]

Hi Sheila!

My name is Pat and I am g-ma to , 4, RSS. (his current stats are in

my signature) Welcome to the group! This is a wonderful bunch of people,

full of info, support and caring.

You mentioned that you'll be moving to a needle/syringe type delivery for

you GH. Have you ever heard of a device called an Inject-Ease?? Bran has

been on GH for almost 2 years now, and we use insulin needles with the

Inject-Ease for delivery. It's really easy. And the Inject-Ease shields that

needle from view, which is a big plus in my mind! LOL If you google

" Inject-Ease " you can see a picture and description of the device. It's

usually used for diabetics, but works well with our kids for GH too!

You were saying that Lizzie has stopped growing even with GH??? You didn't

mention her weight or height but I thought of a couple of things I might

check out.

1) Has her GH been titrated to her weight?? In other words, has her endo

increased her dosage as she gotten heavier???

2) What are her weight and height?? How is her eating?? Could she be lacking

substantial calories for good growth???

3) What is the MRI for??? Bran never had one. We ran a battery of blood

tests, and did a bone age scan, but never did an MRI.

Anyway, just wanted to say welcome, and I hope you find this site as

informative and caring as I have!

Pat (g-ma to , RSS, 4yrs 1m old, 28# 10oz, 35 " , G-tube, GHT)

[Guest guest]

Hi Sheila,

Welcome to the Group! It's so nice to see another girl around my

daughter Olivia's age, and they seem to have started almost

identical! Olivia was born at 31 weeks, 1 lb 11oz, (lost weight

down to 1 lb 7 oz) and 13.5 " long. She's a terrible grower and

isn't on GH (big battle for it here in Canada).

How big is Lizzie (love her name!) now?

Can't wait to get to know you better!

Leah, mom to , almost 11 (in 2 days!) and

Olivia, 6.25 yrs, 23lbs, 36 " , RSS, OI

>

> Hello all!

>

> Quick little intro about my little girl...

>

> Lizzie is 7 years old, she was born at 32 weeks 1 lb 12 oz, Severe

> IUGR. Our first family Dr. for the first 2-3 years of her life

when

> she didn't seem to be growing at all only suggested that I have

her

> drink plenty of whole milk to grow. At 3 we switched to a

> pediatrition who had a complete blood workup done, chromosome

> testing, and bone age x-rays, and then referred us to the local

ped.

> endocrinologist, who has been treating her with Genotropin for the

> last 3.5 years. We experienced good catch up growth the first

year

> on the GH, but it has steadily declined since then to having large

> periods of time with little or no growth even though on the GH.

The

> local endo referred us to Children's Mercy in KC for a 2nd

opinion.

> The KC ped endo was suprised that a number of tests had never been

> done on Lizzie, so we immediately did a blood draw for a new set

of

> labs, bone age x-ray, and kidney sonogram. Her MRI is scheduled

for

> next week. At the 2nd opinion appt last week, the endo said she

> exhibited many of the characteristics of RSS. It is something I

had

> thought that she had when we first started researching all of the

> growth issues back 3 years ago, but our local ped endo here in

town

> didn't think so, and also didn't think it was important to do an

MRI

> before starting GHT... (long story about the local ped endo, but

an

> experience my friend had with him regarding her daughter was

enough

> to tell me I didn't want him as our Dr either). We have new

health

> insurance, and they will not pay for the Genotropin any more,

> instead their drug of choice is Tev-Tropin. We get out first

> shipment in later today, this will be a new experience, giving

daily

> shots with needle/syringe instead of the Pen Device.

>

> Aside from the medical stuff, Lizzie has 2 brothers, 5 and 18

months

> (who were also preemies, but do not appear to have any growth

> issues) and another sibling on the way (I'm only 11 weeks, so we

do

> not know yet if it is a little sister or brother).

>

> I've rambled on enough, lol!

>

> Sheila

>

[Guest guest]

hello

wellcome to a great group. your story about doc are very simmaler to mine

my son is 9 and has just been on GHt for about a year and 3 months he is doing

so weel in the first year but i have no idea how it will come about. i would

also suggest getting a good amount of food in her that might help the gh work

maybe your doc would put her on peractin it is antihistame that really work well

on our kids as an appitite stimulant to help get the much needed calories in the

little eaters

cara mom to jacob 9

kenwintech wrote:

Hello all!

Quick little intro about my little girl...

Lizzie is 7 years old, she was born at 32 weeks 1 lb 12 oz, Severe

IUGR. Our first family Dr. for the first 2-3 years of her life when

she didn't seem to be growing at all only suggested that I have her

drink plenty of whole milk to grow. At 3 we switched to a

pediatrition who had a complete blood workup done, chromosome

testing, and bone age x-rays, and then referred us to the local ped.

endocrinologist, who has been treating her with Genotropin for the

last 3.5 years. We experienced good catch up growth the first year

on the GH, but it has steadily declined since then to having large

periods of time with little or no growth even though on the GH. The

local endo referred us to Children's Mercy in KC for a 2nd opinion.

The KC ped endo was suprised that a number of tests had never been

done on Lizzie, so we immediately did a blood draw for a new set of

labs, bone age x-ray, and kidney sonogram. Her MRI is scheduled for

next week. At the 2nd opinion appt last week, the endo said she

exhibited many of the characteristics of RSS. It is something I had

thought that she had when we first started researching all of the

growth issues back 3 years ago, but our local ped endo here in town

didn't think so, and also didn't think it was important to do an MRI

before starting GHT... (long story about the local ped endo, but an

experience my friend had with him regarding her daughter was enough

to tell me I didn't want him as our Dr either). We have new health

insurance, and they will not pay for the Genotropin any more,

instead their drug of choice is Tev-Tropin. We get out first

shipment in later today, this will be a new experience, giving daily

shots with needle/syringe instead of the Pen Device.

Aside from the medical stuff, Lizzie has 2 brothers, 5 and 18 months

(who were also preemies, but do not appear to have any growth

issues) and another sibling on the way (I'm only 11 weeks, so we do

not know yet if it is a little sister or brother).

I've rambled on enough, lol!

Sheila

[Guest guest]

Hello,

Thank you for the inject-ease recommendations! After the bit of a

struggle with last night's 1st shot with the new needle/syringe,

it's definitely worth looking into!

1) Yes, the endo has been increasing the dose according to her

weight, but the old endo was giving a small amount less than what

the new endo recommends (1.2 7x a week vs 1.5 6x a week recommended

by the new endo)

2) Forgive me, but I don't know her exact height (roughly 43 " )! The

old endo never converted it to inches for me, and I can't remember

what it was in mm. Her weight has been hovering right at 39 lbs for

the last 6 months or so, just before that she had a 5 lb weight gain

in 3 months. As far as calorie intake goes, I'd be afraid to put

more into her! LOL She can eat like a horse.... The ladies in the

cafeteria at her school always comment to me how she can finish her

lunch and always want 2nds each day... they can't figure out how

such a little thing can eat so much food! She can eat a full meal,

and she'll be asking for something to eat in just an hour.

3) I think the MRI is to look for tumors, from most of the reading

that I have done I was under the impression this was routine before

starting GHT. All of the other kids I know on GH have had MRIs

before starting the therepy.

Sheila, mom to Lizzie

>

> Hi Sheila!

>

> My name is Pat and I am g-ma to , 4, RSS. (his current

stats are in

> my signature) Welcome to the group! This is a wonderful bunch of

people,

> full of info, support and caring.

>

> You mentioned that you'll be moving to a needle/syringe type

delivery for

> you GH. Have you ever heard of a device called an Inject-Ease??

Bran has

> been on GH for almost 2 years now, and we use insulin needles with

the

> Inject-Ease for delivery. It's really easy. And the Inject-Ease

shields that

> needle from view, which is a big plus in my mind! LOL If you

google

> " Inject-Ease " you can see a picture and description of the device.

It's

> usually used for diabetics, but works well with our kids for GH

too!

>

> You were saying that Lizzie has stopped growing even with GH???

You didn't

> mention her weight or height but I thought of a couple of things I

might

> check out.

>

> 1) Has her GH been titrated to her weight?? In other words, has

her endo

> increased her dosage as she gotten heavier???

>

> 2) What are her weight and height?? How is her eating?? Could she

be lacking

> substantial calories for good growth???

>

> 3) What is the MRI for??? Bran never had one. We ran a battery of

blood

> tests, and did a bone age scan, but never did an MRI.

>

> Anyway, just wanted to say welcome, and I hope you find this site

as

> informative and caring as I have!

>

> Pat (g-ma to , RSS, 4yrs 1m old, 28# 10oz, 35 " , G-tube, GHT)

>

[Guest guest]

Hi Leah,

Lizzie is roughly 43 " and 39 lbs. Her name is a rather interesting

story, it was supposed to be , but the night before she was

born, my husband and I were watching an old rerun of Friends, and

they called " Rach " and neither one of us liked that

nickname. My husband jokingly said, it's alright, we have 2 more

months to pick out a name.... she was born about 8 hours later!

Sheila, mom to Lizzie

> >

> > Hello all!

> >

> > Quick little intro about my little girl...

> >

> > Lizzie is 7 years old, she was born at 32 weeks 1 lb 12 oz,

Severe

> > IUGR. Our first family Dr. for the first 2-3 years of her life

> when

> > she didn't seem to be growing at all only suggested that I have

> her

> > drink plenty of whole milk to grow. At 3 we switched to a

> > pediatrition who had a complete blood workup done, chromosome

> > testing, and bone age x-rays, and then referred us to the local

> ped.

> > endocrinologist, who has been treating her with Genotropin for

the

> > last 3.5 years. We experienced good catch up growth the first

> year

> > on the GH, but it has steadily declined since then to having

large

> > periods of time with little or no growth even though on the GH.

> The

> > local endo referred us to Children's Mercy in KC for a 2nd

> opinion.

> > The KC ped endo was suprised that a number of tests had never

been

> > done on Lizzie, so we immediately did a blood draw for a new set

> of

> > labs, bone age x-ray, and kidney sonogram. Her MRI is scheduled

> for

> > next week. At the 2nd opinion appt last week, the endo said she

> > exhibited many of the characteristics of RSS. It is something I

> had

> > thought that she had when we first started researching all of

the

> > growth issues back 3 years ago, but our local ped endo here in

> town

> > didn't think so, and also didn't think it was important to do an

> MRI

> > before starting GHT... (long story about the local ped endo, but

> an

> > experience my friend had with him regarding her daughter was

> enough

> > to tell me I didn't want him as our Dr either). We have new

> health

> > insurance, and they will not pay for the Genotropin any more,

> > instead their drug of choice is Tev-Tropin. We get out first

> > shipment in later today, this will be a new experience, giving

> daily

> > shots with needle/syringe instead of the Pen Device.

> >

> > Aside from the medical stuff, Lizzie has 2 brothers, 5 and 18

> months

> > (who were also preemies, but do not appear to have any growth

> > issues) and another sibling on the way (I'm only 11 weeks, so we

> do

> > not know yet if it is a little sister or brother).

> >

> > I've rambled on enough, lol!

> >

> > Sheila

> >

>

[Guest guest]

Thank you for the advice! At this point I'd be afraid to give her

anything to stimulate her appetite, it's absolutely incredible how

much food this girl can eat! She has a 5 year old brother (normal

size, no growth issues) and she routinely eats at least twice as

much as he does at meals.

Sheila, mom to Lizzie

> Hello all!

>

> Quick little intro about my little girl...

>

> Lizzie is 7 years old, she was born at 32 weeks 1 lb 12 oz, Severe

> IUGR. Our first family Dr. for the first 2-3 years of her life

when

> she didn't seem to be growing at all only suggested that I have

her

> drink plenty of whole milk to grow. At 3 we switched to a

> pediatrition who had a complete blood workup done, chromosome

> testing, and bone age x-rays, and then referred us to the local

ped.

> endocrinologist, who has been treating her with Genotropin for the

> last 3.5 years. We experienced good catch up growth the first

year

> on the GH, but it has steadily declined since then to having large

> periods of time with little or no growth even though on the GH.

The

> local endo referred us to Children's Mercy in KC for a 2nd

opinion.

> The KC ped endo was suprised that a number of tests had never been

> done on Lizzie, so we immediately did a blood draw for a new set

of

> labs, bone age x-ray, and kidney sonogram. Her MRI is scheduled

for

> next week. At the 2nd opinion appt last week, the endo said she

> exhibited many of the characteristics of RSS. It is something I

had

> thought that she had when we first started researching all of the

> growth issues back 3 years ago, but our local ped endo here in

town

> didn't think so, and also didn't think it was important to do an

MRI

> before starting GHT... (long story about the local ped endo, but

an

> experience my friend had with him regarding her daughter was

enough

> to tell me I didn't want him as our Dr either). We have new

health

> insurance, and they will not pay for the Genotropin any more,

> instead their drug of choice is Tev-Tropin. We get out first

> shipment in later today, this will be a new experience, giving

daily

> shots with needle/syringe instead of the Pen Device.

>

> Aside from the medical stuff, Lizzie has 2 brothers, 5 and 18

months

> (who were also preemies, but do not appear to have any growth

> issues) and another sibling on the way (I'm only 11 weeks, so we

do

> not know yet if it is a little sister or brother).

>

> I've rambled on enough, lol!

>

> Sheila

>

>

>

>

>

>