Test

[Guest guest]

Hi, Missy

I'm one of the ones who hasn't been taking (Jake) to an

Endocrinologist. I wish we had been told either by the Pediatrician or

the diagnosing (?) Geneticist that we would need to follow up. In

fact, when I asked, I was told we didn't need to do anything. It's

been frustrating since the beginning; we got a million different

diagnoses until RSS! In fact, we thought all the testing and wondering

was over now! We figured, okay, he'll just be small-that's how it was

presented to us, anyway. However, I've since learned that Jake should

be seeing a Pediatric Endocrinologist. Now, I have to tell Jake's

Pediatrician that I want yet " another " referral to another

Endocrinologist. What else should we expect and have others of you had

Pedi's that are as laid back as ours? Well, I will be calling him

tomorrow because THANKS TO JODI, (for Dr. Harbison's number) - our

app't is on Sept. 9th!!

Debbi, Mom to Jake, 4 yrs, 4 mos, 24 lbs., 35 3/4 "

___________________________

___________________________

--- MAJShos@... wrote:

> From: MAJShos@...

>

> I've been reading the e-mails with interest, but

> haven't had much to say...

> I am rather surprised that some of the parents

> haven't been in closer contact

> with a pediatric endocrinologist. That is who we

> see for the majority of

> Ian's issues these days. I spoke with his nurse

> today to get Ian scheduled

> for his overnight study. It's next Tuesday. Ian is

> not happy about going to

> the hospital or getting stuck with the needle. I

> promised him this would be

> the last test we did to see if the " medicine would

> help him get taller " . My

> question to the parents of the older kids is: how

> did you explain things to

> your child?? Ian knows he is smaller than other

> kids, knows he should wear

> his shoes with the left one " bigger " because Dr.

> Gupta-orthopedic doctor-

> said he should & certainly knows he goes to special

> doctors & gets poked with

> needles. I don't want to overload his little brain

> or not explain things

> well enough that I give him a complex ... Any

> suggestions??

>

> Missy

> mommy to Ian- 35 1/2 inches, 21 pounds, had g-tube,

> assymetry & 5 on Sunday!!

>

> ---------------------------

[Guest guest]

Debbi,

Wow!! I'm surprised that more parents haven't been referred on to an

endocrinologist. When Ian was 1st DX'd, he was a patient at the children's

hospital & was seen by what seemed every specialist group in there. I

physically took him to see another endocrinologist at a nearby hospital to be

seen... Afterwards, the ped endo came to see us & we were told we would need

to set up an appointment for several clinics, which we did. After the

initial appt with the ped endo, I was very dissatisfied with him. He

actually told me that he was not going to discuss further treatments or

issues concerning Ian's RSS at that point in time because they were not

relevant since he was so young, no treatments could be done for him at that

point in time!!! Can you believe that?? So, I can understand your

frustration also.. As a parent, I don't care if any specific treatment or

testing could not be done at that point for my child, I just wanted to be

aware of what the future may hold-anything that concerns my child is RELEVANT

& IMPORTANT to me no matter what. We're the ones who have to deal with

everything, so the more info we have, the better. Needless to say, I changed

doctors & am quite happy with one we have now. That's just been my

experience & hope that others haven't had to deal with some of the same

ignorance!! All doctors are NOT equal & from what I've read of the parents

who take their children to Dr. Habinger, they are lucky to be seeing her.

I've just learned over these past 4 years that you have to be informed & be

able to talk to your child's physicians. If you can't do that, then that is

probably not the physician for your child's on going care. Do you have an

HMO?? We did when Ian was 1st born, but I honestly believe that had we

remained with it, Ian would not have gotten the same care as he did after we

changed to a PPO. Our HMO doctor simply was not equipped to handle a child

like Ian!!!

Missy

mom to Ian- 35 1/2 inches, 21 pounds, assymetry

[Guest guest]

Debbie:

I " had " a pediatrician that was " very " laid back and kept brushing 's

smallness off as no big deal........that he's just small. Well, after a

year of going to him and not learning much more about my son, nor getting

any answers to my many questions, I changed pediatricians. The one I have

now is GREAT and listens to all my questions, answers them, and if she can't

answer them, she finds out the answer for me. She is very insistent that we

have our G.I. doctor and Endo. doctor to closely monitor . Like she

said, she is trained to care for sick children and the basic needs, but they

are not " specialized " and kids that require extra attention should by all

means get that kind of care. Definately put your foot down and insist on

seeing an Endo. doctor.

Good luck and stay strong!

Stacie

Mommy to daughter, (6 yrs.) and son, (2 1/2 yrs.) with RSS,

assemytry, & g-tube. 19 1/2 lbs. and 30 1/4 in. tall.

debbi schaffer wrote:

>

>

> Hi, Missy

>

> I'm one of the ones who hasn't been taking (Jake) to an

> Endocrinologist. I wish we had been told either by the Pediatrician or

> the diagnosing (?) Geneticist that we would need to follow up. In

> fact, when I asked, I was told we didn't need to do anything. It's

> been frustrating since the beginning; we got a million different

> diagnoses until RSS! In fact, we thought all the testing and wondering

> was over now! We figured, okay, he'll just be small-that's how it was

> presented to us, anyway. However, I've since learned that Jake should

> be seeing a Pediatric Endocrinologist. Now, I have to tell Jake's

> Pediatrician that I want yet " another " referral to another

> Endocrinologist. What else should we expect and have others of you had

> Pedi's that are as laid back as ours? Well, I will be calling him

> tomorrow because THANKS TO JODI, (for Dr. Harbison's number) - our

> app't is on Sept. 9th!!

>

> Debbi, Mom to Jake, 4 yrs, 4 mos, 24 lbs., 35 3/4 "

> ___________________________

> ___________________________

> --- MAJShos@... wrote:

> > From: MAJShos@...

> >

> > I've been reading the e-mails with interest, but

> > haven't had much to say...

> > I am rather surprised that some of the parents

> > haven't been in closer contact

> > with a pediatric endocrinologist. That is who we

> > see for the majority of

> > Ian's issues these days. I spoke with his nurse

> > today to get Ian scheduled

> > for his overnight study. It's next Tuesday. Ian is

> > not happy about going to

> > the hospital or getting stuck with the needle. I

> > promised him this would be

> > the last test we did to see if the " medicine would

> > help him get taller " . My

> > question to the parents of the older kids is: how

> > did you explain things to

> > your child?? Ian knows he is smaller than other

> > kids, knows he should wear

> > his shoes with the left one " bigger " because Dr.

> > Gupta-orthopedic doctor-

> > said he should & certainly knows he goes to special

> > doctors & gets poked with

> > needles. I don't want to overload his little brain

> > or not explain things

> > well enough that I give him a complex ... Any

> > suggestions??

> >

> > Missy

> > mommy to Ian- 35 1/2 inches, 21 pounds, had g-tube,

> > assymetry & 5 on Sunday!!

> >

> > ---------------------------

[Guest guest]

Hi Debbi- It sounds like you have the same type of pediatrician we have. Our

son only saw a endrocrinologist twice. She informed us that if we wanted to do

growth hormone that was the only reason to bother with her. She did do one very

valuable, non painful test. That was the bone age study. It only takes a X-ray.

But other than that we just keep up with ' pedi for measurements. We

try to keep the tests and misc. to a minimum. After the terrible things they

tested him for the first few years of life, we wonder whats really necessary.

prefers to stay away from doctors altogether. When they propose a new

test, asks us, " What will this tell them? " " Does this matter? " And

most of the time hes right. Alot of his tests have given us no new information.

People disagree on this point with me, but its just our experiences.....

Hawkins mother to 4, one being age 6

[Guest guest]

Hi everyone! I wanted to thank you all for the info on the car seat issue.

I'll keep facing backwards for the time being.He's only 11lbs. 13 oz.

26 inches @ 17 months. He's very strong and is able to walk or should I say

run everywhere. We also were not informed about seeing an endocrinologist

until I spoke to another parent about RSS. Our appointment is for the end

of the month with Dr. Harbison. I'm looking forward to hear what she has to

say. Good luck to all of you!

[Guest guest]

HI, LAURA!

Jake has had a few bone-age tests already - one at 20 mos chron age,

his bone age was 6-9 mos at that point. The second one at 30 mos chron

was read at 24 mos (in 10 mos real time, his bone age had progressed

15-18 mos??) Well, no one believed that it was right, of course. We

thought all the tests were over with but now since we've learned that

we should be followed by an Endo, we are fearing more. Jake cried when

I told him we were taking him to a dr. that takes care of children with

Silver Syndrome. Well, in the meantime, I've tried the Boost

Plus-he wouldn't drink it. I tried the next day by adding Hershey's

syrup and ice in the blender for a shake-he wouldn't drink it. We all

tried it to see if it was so terrible-actually, I liked it, but didn't

want to drink it because of all the calories! I'm trying Pediasure

next, but decided tonight, as a matter of fact, that I just can't force

him to drink these things at the age of four (or any age). I just read

one e-mail the other day about Carnation Instant Bkfst, I used to add

that to his milk-I'll try that again, too.

Oh, sorry! Everyone says, " I'm Rambling! " - and I am, too-but, if

Jake's/our personal story makes it into the newsletter-you'll see I'm

good at it!

Bye for now-

Debbi, Mom to Jake, 4 yrs, 4mos, 24 lbs, 35 3/4 "

___________________________

___________________________

--- Hawkins wrote:

> From: laurah@... (

> Hawkins)

>

> Hi Debbi- It sounds like you have the same type of

> pediatrician we have. Our

> son only saw a endrocrinologist twice. She informed

> us that if we wanted to do

> growth hormone that was the only reason to bother

> with her. She did do one very

> valuable, non painful test. That was the bone age

> study. It only takes a X-ray.

> But other than that we just keep up with '

> pedi for measurements. We

> try to keep the tests and misc. to a minimum. After

> the terrible things they

> tested him for the first few years of life, we

> wonder whats really necessary.

> prefers to stay away from doctors

> altogether. When they propose a new

> test, asks us, " What will this tell them? "

> " Does this matter? " And

> most of the time hes right. Alot of his tests have

> given us no new information.

> People disagree on this point with me, but its just

> our experiences.....

> Hawkins mother to 4, one being age 6

>

> ---------------------------

[Guest guest]

Hi, Stacie!

(Ok, I won't ramble)- I planned on calling my Pedi yest and today for

an app't and a referral, but, I wasn't home either day during his

hours. So, tomorrow is the day-he really has been good about

referrals, I probably in reality won't get a hassle. I will switch if

I feel it's necessary-he doesn't intimidate me, fortunately. (And,

Missy-you wrote yest (?) - I have Pru Healthcare (and, Dr. H. takes

that...cool!)so, ins. luckily isn't a problem).

Thanks for all the support-I'll let you all know what he has to say.

Debbi, Mom to Jake, 4 yrs, 4 mos, 24 lbs, 35 3/4 "

_________________________

_________________________

--- tclfam@... wrote:

> From: tclfam@...

>

> Debbie:

>

> I " had " a pediatrician that was " very " laid back and

> kept brushing 's

> smallness off as no big deal........that he's just

> small. Well, after a

> year of going to him and not learning much more

> about my son, nor getting

> any answers to my many questions, I changed

> pediatricians. The one I have

> now is GREAT and listens to all my questions,

> answers them, and if she can't

> answer them, she finds out the answer for me. She

> is very insistent that we

> have our G.I. doctor and Endo. doctor to closely

> monitor . Like she

> said, she is trained to care for sick children and

> the basic needs, but they

> are not " specialized " and kids that require extra

> attention should by all

> means get that kind of care. Definately put your

> foot down and insist on

> seeing an Endo. doctor.

>

> Good luck and stay strong!

>

> Stacie

> Mommy to daughter, (6 yrs.) and son, (2

> 1/2 yrs.) with RSS,

> assemytry, & g-tube. 19 1/2 lbs. and 30 1/4 in.

> tall.

>

>

>

> debbi schaffer wrote:

>

> >

> >

> > Hi, Missy

> >

> > I'm one of the ones who hasn't been taking (Jake)

> to an

> > Endocrinologist. I wish we had been told either

> by the Pediatrician or

> > the diagnosing (?) Geneticist that we would need

> to follow up. In

> > fact, when I asked, I was told we didn't need to

> do anything. It's

> > been frustrating since the beginning; we got a

> million different

> > diagnoses until RSS! In fact, we thought all the

> testing and wondering

> > was over now! We figured, okay, he'll just be

> small-that's how it was

> > presented to us, anyway. However, I've since

> learned that Jake should

> > be seeing a Pediatric Endocrinologist. Now, I

> have to tell Jake's

> > Pediatrician that I want yet " another " referral to

> another

> > Endocrinologist. What else should we expect and

> have others of you had

> > Pedi's that are as laid back as ours? Well, I

> will be calling him

> > tomorrow because THANKS TO JODI, (for Dr.

> Harbison's number) - our

> > app't is on Sept. 9th!!

> >

> > Debbi, Mom to Jake, 4 yrs, 4 mos, 24 lbs., 35 3/4 "

> > ___________________________

> > ___________________________

> > --- MAJShos@... wrote:

> > > From: MAJShos@...

> > >

> > > I've been reading the e-mails with interest,

> but

> > > haven't had much to say...

> > > I am rather surprised that some of the parents

> > > haven't been in closer contact

> > > with a pediatric endocrinologist. That is who

> we

> > > see for the majority of

> > > Ian's issues these days. I spoke with his nurse

> > > today to get Ian scheduled

> > > for his overnight study. It's next Tuesday.

> Ian is

> > > not happy about going to

> > > the hospital or getting stuck with the needle.

> I

> > > promised him this would be

> > > the last test we did to see if the " medicine

> would

> > > help him get taller " . My

> > > question to the parents of the older kids is:

> how

> > > did you explain things to

> > > your child?? Ian knows he is smaller than other

> > > kids, knows he should wear

> > > his shoes with the left one " bigger " because Dr.

> > > Gupta-orthopedic doctor-

> > > said he should & certainly knows he goes to

> special

> > > doctors & gets poked with

> > > needles. I don't want to overload his little

> brain

> > > or not explain things

> > > well enough that I give him a complex ... Any

> > > suggestions??

> > >

> > > Missy

> > > mommy to Ian- 35 1/2 inches, 21 pounds, had

> g-tube,

> > > assymetry & 5 on Sunday!!

> > >

> > > ---------------------------

[Guest guest]

Debbi, thank you for acknowledging my efforts. I had such a tough day at

camp today that the compliment was well-received!

Jodi

Re: test

>

>

>Hi, Missy

>

>I'm one of the ones who hasn't been taking (Jake) to an

>Endocrinologist. I wish we had been told either by the Pediatrician or

>the diagnosing (?) Geneticist that we would need to follow up. In

>fact, when I asked, I was told we didn't need to do anything. It's

>been frustrating since the beginning; we got a million different

>diagnoses until RSS! In fact, we thought all the testing and wondering

>was over now! We figured, okay, he'll just be small-that's how it was

>presented to us, anyway. However, I've since learned that Jake should

>be seeing a Pediatric Endocrinologist. Now, I have to tell Jake's

>Pediatrician that I want yet " another " referral to another

>Endocrinologist. What else should we expect and have others of you had

>Pedi's that are as laid back as ours? Well, I will be calling him

>tomorrow because THANKS TO JODI, (for Dr. Harbison's number) - our

>app't is on Sept. 9th!!

>

>Debbi, Mom to Jake, 4 yrs, 4 mos, 24 lbs., 35 3/4 "

>___________________________

>___________________________

>--- MAJShos@... wrote:

>> From: MAJShos@...

>>

>> I've been reading the e-mails with interest, but

>> haven't had much to say...

>> I am rather surprised that some of the parents

>> haven't been in closer contact

>> with a pediatric endocrinologist. That is who we

>> see for the majority of

>> Ian's issues these days. I spoke with his nurse

>> today to get Ian scheduled

>> for his overnight study. It's next Tuesday. Ian is

>> not happy about going to

>> the hospital or getting stuck with the needle. I

>> promised him this would be

>> the last test we did to see if the " medicine would

>> help him get taller " . My

>> question to the parents of the older kids is: how

>> did you explain things to

>> your child?? Ian knows he is smaller than other

>> kids, knows he should wear

>> his shoes with the left one " bigger " because Dr.

>> Gupta-orthopedic doctor-

>> said he should & certainly knows he goes to special

>> doctors & gets poked with

>> needles. I don't want to overload his little brain

>> or not explain things

>> well enough that I give him a complex ... Any

>> suggestions??

>>

>> Missy

>> mommy to Ian- 35 1/2 inches, 21 pounds, had g-tube,

>> assymetry & 5 on Sunday!!

>>

>> ---------------------------

[Guest guest]

Good luck with your referrals. I hope it all goes smoothly for you. That's

great that your pediatrician doesn't intimidate you. I have been

intimidated a couple of times with doctors, but have since become a little

better about standing my ground. It's amazing of not only how far has

come, but also how far I've come with standing up to the medical

profession! I hardly ever had to deal with the medical profession prior to

so this has been a new experience for me. Amazing how it can make you

stronger. Especially when you become such an advocate for your child

because of how much you love them!!!!

Good luck and take care.......

Stacie

Mommy to daughter, - 6 yrs. and son, - 2 1/2 yrs. (19 1/2 lbs. &

30 1/4 in.) with RSS, assemytry, & g-tube.

debbi schaffer wrote:

>

>

> Hi, Stacie!

>

> (Ok, I won't ramble)- I planned on calling my Pedi yest and today for

> an app't and a referral, but, I wasn't home either day during his

> hours. So, tomorrow is the day-he really has been good about

> referrals, I probably in reality won't get a hassle. I will switch if

> I feel it's necessary-he doesn't intimidate me, fortunately. (And,

> Missy-you wrote yest (?) - I have Pru Healthcare (and, Dr. H. takes

> that...cool!)so, ins. luckily isn't a problem).

>

> Thanks for all the support-I'll let you all know what he has to say.

>

> Debbi, Mom to Jake, 4 yrs, 4 mos, 24 lbs, 35 3/4 "

> _________________________

> _________________________

>

> --- tclfam@... wrote:

> > From: tclfam@...

> >

> > Debbie:

> >

> > I " had " a pediatrician that was " very " laid back and

> > kept brushing 's

> > smallness off as no big deal........that he's just

> > small. Well, after a

> > year of going to him and not learning much more

> > about my son, nor getting

> > any answers to my many questions, I changed

> > pediatricians. The one I have

> > now is GREAT and listens to all my questions,

> > answers them, and if she can't

> > answer them, she finds out the answer for me. She

> > is very insistent that we

> > have our G.I. doctor and Endo. doctor to closely

> > monitor . Like she

> > said, she is trained to care for sick children and

> > the basic needs, but they

> > are not " specialized " and kids that require extra

> > attention should by all

> > means get that kind of care. Definately put your

> > foot down and insist on

> > seeing an Endo. doctor.

> >

> > Good luck and stay strong!

> >

> > Stacie

> > Mommy to daughter, (6 yrs.) and son, (2

> > 1/2 yrs.) with RSS,

> > assemytry, & g-tube. 19 1/2 lbs. and 30 1/4 in.

> > tall.

> >

> >

> >

> > debbi schaffer wrote:

> >

> > >

> > >

> > > Hi, Missy

> > >

> > > I'm one of the ones who hasn't been taking (Jake)

> > to an

> > > Endocrinologist. I wish we had been told either

> > by the Pediatrician or

> > > the diagnosing (?) Geneticist that we would need

> > to follow up. In

> > > fact, when I asked, I was told we didn't need to

> > do anything. It's

> > > been frustrating since the beginning; we got a

> > million different

> > > diagnoses until RSS! In fact, we thought all the

> > testing and wondering

> > > was over now! We figured, okay, he'll just be

> > small-that's how it was

> > > presented to us, anyway. However, I've since

> > learned that Jake should

> > > be seeing a Pediatric Endocrinologist. Now, I

> > have to tell Jake's

> > > Pediatrician that I want yet " another " referral to

> > another

> > > Endocrinologist. What else should we expect and

> > have others of you had

> > > Pedi's that are as laid back as ours? Well, I

> > will be calling him

> > > tomorrow because THANKS TO JODI, (for Dr.

> > Harbison's number) - our

> > > app't is on Sept. 9th!!

> > >

> > > Debbi, Mom to Jake, 4 yrs, 4 mos, 24 lbs., 35 3/4 "

> > > ___________________________

> > > ___________________________

> > > --- MAJShos@... wrote:

> > > > From: MAJShos@...

> > > >

> > > > I've been reading the e-mails with interest,

> > but

> > > > haven't had much to say...

> > > > I am rather surprised that some of the parents

> > > > haven't been in closer contact

> > > > with a pediatric endocrinologist. That is who

> > we

> > > > see for the majority of

> > > > Ian's issues these days. I spoke with his nurse

> > > > today to get Ian scheduled

> > > > for his overnight study. It's next Tuesday.

> > Ian is

> > > > not happy about going to

> > > > the hospital or getting stuck with the needle.

> > I

> > > > promised him this would be

> > > > the last test we did to see if the " medicine

> > would

> > > > help him get taller " . My

> > > > question to the parents of the older kids is:

> > how

> > > > did you explain things to

> > > > your child?? Ian knows he is smaller than other

> > > > kids, knows he should wear

> > > > his shoes with the left one " bigger " because Dr.

> > > > Gupta-orthopedic doctor-

> > > > said he should & certainly knows he goes to

> > special

> > > > doctors & gets poked with

> > > > needles. I don't want to overload his little

> > brain

> > > > or not explain things

> > > > well enough that I give him a complex ... Any

> > > > suggestions??

> > > >

> > > > Missy

> > > > mommy to Ian- 35 1/2 inches, 21 pounds, had

> > g-tube,

> > > > assymetry & 5 on Sunday!!

> > > >

> > > > ---------------------------

[Guest guest]

Hi Missy,

First, happy birthday to Ian! Hope it was a lot of fun. As far as

explaining things to Ian, how has he handled what you have explained so far?

I was so concerned about that for a long time and how to say it and would

Ross be affected by what we explained, that I put off explaining RSS to him

for a long time. I know other parents have talked to their kids about it

from Day One. Ross knew he was a lot smaller than his friends and it

started becoming an issue this year, so we just casually told him why. He

seemed to accept it without a fuss, although occasionally he does get

sensitive if someone calls him " little " . He even accepts his asymmetry and

his shoe lift very well. I'm really looking forward to the MAGIC

convention. Ross knows a couple of kids with RSS and I think knowing them

has helped him tremendously in understanding that he's not the only one with

RSS and it's made it easier on us, too. I can't wait for him to meet a lot

of other kids with RSS to reinforce the idea, and the fact that having RSS

just might make him feel special! After all, at this age, everything's

about them anyway, right? And hang in there with the testing!

Dennise

Ross, age 5, 37 3/4 " , 26.5 lbs., asymmetry.

test

>From: MAJShos@...

>

My question to the parents of the older kids is: how did you explain things

to

>your child?? Ian knows he is smaller than other kids, knows he should wear

>his shoes with the left one " bigger " because Dr. Gupta-orthopedic doctor-

>said he should & certainly knows he goes to special doctors & gets poked

with

>needles. I don't want to overload his little brain or not explain things

>well enough that I give him a complex ... Any suggestions??

>

>Missy

>mommy to Ian- 35 1/2 inches, 21 pounds, had g-tube, assymetry & 5 on

Sunday!!

>

>

[Guest guest]

Hi Dennise- I saw your mail to Missy. You'd be surprised that I'm the only

parent I know who has explained RSS to my son since he was about 2. Everyone

else I've talked to are worried about how it will affect their children at such

a young age. My son is 6. It has made such a positive difference in our lives.

feels special now. And when someone makes a nasty comment to him, he

realizes its their problem, not his. Before it really bothered him. We started

out explaining it to him out of necessity. He has 3 siblings, and has always

known he was different. (With all the doctor stuff.) We also took a long time

and explained in little, easy to understand bits. Like you are doing. I have

also stressed the positives for being small.(ie. we went to Carlsbad caverns,

and one of the conversations was cave explorers needing to be small to make

bigger discoveries in caves. Big explorers don't fit through the little nooks

and crannies.)

I'm thrilled that Missy is explaining this to Ian. It sure has made life easier

for my . - Hawkins

[Guest guest]

:

My son has had his share of bumps and bruises due to his falling. He's 2 1/2

years old and even though has been walking steadily on his own for a year now,

he sometimes still will get off balance and fall. does have assemytry, but

I also think the larger head compared to the littler body is what can mainly

cause them to teeter over. They are not correctly in proportion when they are

toddlers and can tend to get off balance more often and fall (toddlers fall more

often anyway). From what I hear, the larger head vs. the smaller body evens out

as they get older. This is probably why they don't fall as much as well as

getting stronger in their little legs. 's physical therapist told me that

it isn't uncommon for new walkers (especially with assemytry) to topple over for

the first year of walking. I will say that I have noticed doesn't fall

over as much as he did when he first started walking. So hang in there, be

there to try and catch him on those real hard surfaces, and give him plenty of

practice!!!! I think had a continuous bump on his head for the first six

months or so of walking! ha. ha. ha. Poor little guy!

As for shoes.......the best place for extra small and narrow feet that I've

found is Stride Rite shoe store, which I think is all across the country. You

can special order shoes that will fit them and will add inserts too if you need

to. So far, we've been lucky and able to buy over the counter shoes at

Stride Rite that are marked narrow and they fit him fine. They cost a lot more,

but since these kids don't grow all that fast, you get your moneys worth for the

length of time the kids wear them. For example, I just bought some sandals

at Payless Shoe Source for Kids and also at Mervyn's Department Store and they

were too wide and hard as a board. I was trying to save money and buy cheaper

shoes. I took them back, went to Stride Rite, where I knew they would have

sandals to fit him, and bought him a NICE pair for $42!!!!! Yes, they are

expensive, but worth every dime since it means comfort for and better for

his feet. They are made of real leather and have an arch inside his is

excellent for them. Not all cheaper shoes have arches for kids (flat as a board

and hard too!) Anyway, if you have a Stride Rite store, I would check them

out. I've had great luck with them. I sort of figure that you only get one

pair of feet in a life time and considering his existing problem

(assymetry/small narrow feet), deserves a good pair of shoes that feel good

on him.

I didn't mean to go into this big long story. Sorry! By the way, ,

have you spoken to my mom yet? She adores my little boy and wanted to keep up

on the latest with RSS and what other families go through. So I had her join.

So maybe you " Grandma's " can talk and share what it is like to have an RSS

grandchild. Having Grandma's support us moms and get us through those rough

times is a TERRIFIC help and much appreciated!!!!!!!!

Take care.......

Stacie

Mommy to daughter, (6 yrs.) and son, (2 1/2 yrs.) 19 1/2 lbs. - 30

1/4 in. tall with RSS, assemytry, & g-tube

linda justice wrote:

>

>

> Missy, I must have missed what your son's test was for. Why do they have

> to take blood every few minutes? Is this for the growth hormone? Do all

> RSS kids have to take it? My grandson Trey has asymmetry also. He has had

> a couple of really hard falls this past week and has huge bumps on his head

> from both of them. I'm wondering if his leg length difference is becoming

> more of a hazard. My daughter had to return a pair of sandals that she

> bought him because the one on his left foot kept falling off. Any helpful

> hints on what you do for shoes as they get older? I'm glad the testing went

> so well for the both of you. I wonder if there are any RSS children who

> have grown up to be doctors, nurses, therapists, etc. Wouldn't you just

> love to talk to them? Bye, Grandma

>

> ---------------------------

[Guest guest]

& all

I'll try to make this informative, but brief... Ian had a 3 hr growth

hormone level test done at the end of May. A med by mouth was given to him

at the start that stimulates the body to produce growth hormone. Every 20

mins, blood was drawn to check the level of GH. This test showed his level

was normal. Hence the name stim test. This last test, he stayed in the

hospital overnight. Over a 12 hr period, blood was drawn every 20 mins to

check his blood level for GH's. The body produces GH 6 times a day, the

majority at night-the reason for overnight blood draws. No meds were given,

to check to see how body GH the body produces normally. The article Growth

Hormone Neurosecretory Dysfunction that Inga posted was exacly what the dr

was testing for-stimulated by drugs, the body will produce a normal level of

GH. Left alone, it will not. Hope this makes sense to all!! I don't know

if all RSS kids have had their GH levels tested or not. Our insurance co

will not even consider paying for GHT if his levels are not checked & low.

Then the endo will write the letter of diagnosis, explaining the GHT will be

necessary for Ian. I don't know how early others have had their tested, I

think it varies among endo's & families. Anyone else out there had this

done??

I agree w/Stacie. I don't believe that the leg length discrepancy has

anything to do with clumsiness. We've been told by the various dr's that it

is due to the bigger head vs. smaller body that throws them off balance. And

normal sized children will also loose their balance when first beginning to

walk... Ian had 3 sets of stitches within his 1st 2 1/2 years-all within not

quite 2 years!! He fell alot also, but not tons of cuts & bruises. Good

thing his daycare sent home accident reports for all the times he fell,

someone might have thought we were abusing him....

Missy

mommy to Ian-35 1/2 inches, 21 lbs, assymetry, 5 yrs old

[Guest guest]

We may have to wait awhile before an unstimulated test...

Pg 873 of the book called Pediatric Endocrinology edited by Lima Lifshitz

says about this unstimulated tests:

" In view of the large number of samples collected and the general limitation

of using no more than 5% of total blood volume for laboratory testing in any

2 week period, it is frequently necessary to limit the amount of testing

obtained in each sample. Hence, it is necessary to discuss with your

laboratory the absolute minimum amounts of blood necessary for each sample.

For example, if your laboratory requests 1 ml serum for a GH assay, then

each sample collected must have 2 ml whole blood and the total volume

collected is about 75 ml. If the patient weighs 10 kg, then total blood

volume is only approximately 800 ml and the amount necessary would represent

almost 10% of the total, an unacceptable proprtion. "

Tim is now 15 pounds, which is pretty much less than 10 kg... I suppose a

lab that can work with less blood per sample could MAYBE do it?? Has anyone

had experiences with unstimulated GH tests at close to 15 pounds??

Inga

At 09:54 AM 7/15/99 EDT, MAJShos@... wrote:

>From: MAJShos@...

>

> & all

> I'll try to make this informative, but brief... Ian had a 3 hr growth

>hormone level test done at the end of May. A med by mouth was given to him

>at the start that stimulates the body to produce growth hormone. Every 20

>mins, blood was drawn to check the level of GH. This test showed his level

>was normal. Hence the name stim test. This last test, he stayed in the

>hospital overnight. Over a 12 hr period, blood was drawn every 20 mins to

>check his blood level for GH's. The body produces GH 6 times a day, the

>majority at night-the reason for overnight blood draws. No meds were given,

>to check to see how body GH the body produces normally. The article Growth

>Hormone Neurosecretory Dysfunction that Inga posted was exacly what the dr

>was testing for-stimulated by drugs, the body will produce a normal level of

>GH. Left alone, it will not. Hope this makes sense to all!! I don't know

>if all RSS kids have had their GH levels tested or not. Our insurance co

>will not even consider paying for GHT if his levels are not checked & low.

>Then the endo will write the letter of diagnosis, explaining the GHT will be

>necessary for Ian. I don't know how early others have had their tested, I

>think it varies among endo's & families. Anyone else out there had this

>done??

> I agree w/Stacie. I don't believe that the leg length discrepancy has

>anything to do with clumsiness. We've been told by the various dr's that it

>is due to the bigger head vs. smaller body that throws them off balance. And

>normal sized children will also loose their balance when first beginning to

>walk... Ian had 3 sets of stitches within his 1st 2 1/2 years-all within not

>quite 2 years!! He fell alot also, but not tons of cuts & bruises. Good

>thing his daycare sent home accident reports for all the times he fell,

>someone might have thought we were abusing him....

>

>Missy

>mommy to Ian-35 1/2 inches, 21 lbs, assymetry, 5 yrs old

>

>---------------------------

[Guest guest]

you are right everyone had been very quiet. Rene are you there? Eunice

everyone give a shout so we know your ok

Angie

[Guest guest]

In a message dated 8/15/1999 5:55:30 PM Pacific Daylight Time,

susuw@... writes:

<< Everyone sign in and let us know you're OK! >>

I am here, but dont know about the OK part. Will need a second opinion.

[Guest guest]

In a message dated 8/15/1999 6:15:18 PM Pacific Daylight Time,

AngieCATW1@... writes:

<< Eunice

everyone give a shout so we know your ok >>

I got mail from Eunice, she was doing fine this afternoon.

[Guest guest]

In a message dated 8/15/1999 7:13:41 PM Pacific Daylight Time,

susuw@... writes:

<< That is, if you can find one that says you're normal to

begin with. :-) >>

Ok, will be out getting opinions. This might be fun. Wonder if I should

wear the strapless red number or the satin black. Oh my. What's a girl to

do.

[Guest guest]

Hi :

Hope this works. Thanks again for changing my e-mail address.

Woods wrote:

>

>

> ,

> Reply to this message to make sure your new addy works with onelist.

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> Today I can cry because roses have thorns,

> or I can celebrate that thorns have roses!

> http://hometown.aol.com/RLR1999/HomeRP.html

> http://members.tripod.com/~autoimmune/index.html

>

> ---------------------------

[Guest guest]

Hello Everyone,

This is Jim, I'm fine and everything with onelist and the email seems

to be working ok. It has been a busy weekend, but I have been reading all the

mail. I even got Eunice's picture. It's nice to see that RP does'nt destroy

all beauty. What a lovely couple. Thanks for keeping us all informed. Take

care, Jim.

[Guest guest]

L

laughter is the best medicine and we need to laugh so we don't swell on our

problems.

[Guest guest]

Welcome and where is everyone else?????? This list has been way too

quiet the pass couple of days. Everyone sign in and let us know you're OK!

>>>>>>>>>>>>>>>>

Hi :

Hope this works. Thanks again for changing my e-mail address.

[Guest guest]

Whoops Angie,

I forgot to tell you, Eunice has been a little under the weather for a

while. She's been feeling very tired and drained, so she went " no mail " for

a while.

>>>>>>>>>>>>>>>>>>

From: AngieCATW1@...

you are right everyone had been very quiet. Rene are you there? Eunice

everyone give a shout so we know your ok

Angie

[Guest guest]

Roy,

Get a few!!!!!! That is, if you can find one that says you're normal to

begin with. :-)

>>>>>>>>>>>>>>>>>>>

susuw@... writes:

<< Everyone sign in and let us know you're OK! >>

I am here, but dont know about the OK part. Will need a second opinion.

[Guest guest]

Ladies and Gentlemen of the Jury,

I rest my case!

>>>>>>>>>>>>>>>>>>>>>

susuw@... writes:

<< That is, if you can find one that says you're normal to

begin with. :-) >>

Ok, will be out getting opinions. This might be fun. Wonder if I should

wear the strapless red number or the satin black. Oh my. What's a girl to

do.