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Hi ,

Yes, I agree with you. If Connor is an eater, then I would

absolutely sacrafice the teeth v the gtube. was not an eater,

so for us the gtube was necessary.

As for GHT, until age 2 growth is controlled by nutrition, not GH so

starting before age 2 (unless GH deficient) is a waste. In

addition, if Connor is still experiencing catch-up growth based on

nutrition, it is too early to start GH. With us, Dr H waited until

's growth fell off from the tube and catch-up before starting

us on GH. We started GH 1/2004 when was just about 4 years

old. The GH has helped with both growth and weight.

We use nutropin with the injectease and find it very easy.

As for the kick-boxing, I have been taking karate for 8 years now.

There are definitely days when a particular doctor is my " target. "

Of course, we are spoiled since we are in NY and able to see Dr H

every three months.

Good luck,

Judith, Steve, (RSS) and (non RSS) 4 1/2 year old twins

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Hi ,

I totally understand your frustration. As far as what type of GHT

is right, I beleive it is what your insurance company will cover.

At least for us, we have AETNA and they will only approve one GHT

protocol. We don't even know what that is yet but, Braeden is 26

months and his endo is now trying to get the insurance approval for

GHT. Not that we have made a decision to put Braeden on GHT but, at

least we have the option while we make a decision on what direction

we are going to go. What is odd is that before we had to make a

decision we always assumed we would put Braeden on GHT but, now that

we have to make that decision we wonder if a few inches are going to

be worth the therapy. I just don't know.

Take care and good luck,

Saundra Mom to Braeden (RSS) and Delaney 25 month twins

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-

I think there may be other ways, now that Connor is getting older,

to getting additional calories into him than a nighttime bottle.

The negatives of a nighttime bottle for a child his age is that a)

you are teaching him to wake up in the middle of the night; and B)

his teeth (as you already know). For parents of children under age

1, ignore this email!!!!

If you are giving him the nighttime bottle for caloric reasons only,

how many calories is he taking in during that nighttime feeding?

And is there a way that you could build in those calories anywhere

else during the day? Don't laugh! I have an " eater " as well, and

know how hard this is. We bought " Nite Bites " that are expensive,

but have heard other parents making them.

If you stay with the nighttime feeding, a simple swish of water

after drinking the milk/formula will at least help rinse some of the

sugar off his teeth.

Re the doctors, totally understand. I struggle constantly with peds

endos who " manage height " only. HELLO - aren't height and weight

intrinsically linked???? But I admire your stick-to-your-guns

attitude. Don't forget that MAGIC has the free DVDs and VHSs of

Stanhope and Harbison's presentations at least year's convention.

There is one of Harbison's treatment protocol that you can order for

free if you have it shipped directly to the physician's office....

Re the growth hormone. Remember that all but one (which I can't

recall but it is rarely recommended) are biosynthetically

identical. So don't worry about the manufacturer - it is more

important to find the company that your physician likes and has a

relationship with the pharmacist sales rep -- in case you have

problems it gets resolved quickly...

The Injectease is a product made by Eli Lilly and can be used with

any growth hormone product that is drawn up into the syringe.

>

> Howdy Folks,

>

> here in Lynchburg, VA. Well we had our Pediatric Endo visit

up

> at University of Virginia. I can't say that I'm completely yee

haw

> about it, but the good news is that the doc is famiiar with the

> Magic Foundation and will defer to my preferences on how to care

for

> Connor. For example, he wanted to know why Connor wasn't G-

tubed?

> I told him that we gave him a night time bottle. He then came

back

> with " What about his teeth? " I countered with, " I'm sacraficing

> infant teeth (which they lose anyway and can be covered) for the

> avoidance of an invasive surgery that can lead to other eating

> problems down the road. For RSS, Connor is an " eater. " If we can

> avoid the g-tube we will. For some of you other families that

> wasn't an option. I know this, but I had to educate the doc.

Then

> he wanted to start Connor on the Growth Hormone. However, Connor

is

> having his 2 year old, nutritional growth spurt right now. Now,

if

> I remember Dr. H. right, giving Connor growth hormone right now

> won't really augment what's going on naturally in his system. So,

I

> asked the Dr. if we could wait until Connor's height percentile

> plateaued. He countered with, " Well, no one has PUBLISHED a study

> on Growth Hormone and nutrition together... " GRRRRRR. Once

again,

> that academic snobbery that keeps popping up. I've seen Dr. H's

> results at convention, but other professionals are not ready to

> follow her protocols. However, many of you know how PERSISTENT I

> can be, so for now, we are doing what I feel is best for Connor,

> even though it's not " normal proceedure for UVA, " but is what I

> learned at convention and with my visit with Dr. H. I guess the

> other thing that is frustrating is that this doctor doesn't even

> want to know what we are doing nutritionally for Connor. His

> comment to me was, " I just do endocrinology. " Well, Connor has

> -Silver syndrome and endocrinology is just one of the

systems

> we have to deal with.

>

> Sheesh! I know this sounds rather unlady like, but there are days

> when I want to find a blow up doll of a M.D. I then want to

> practice my kick boxing on said M.D. I have a good imagination.

> Pow! That's for the Orthopedic who won't do anything for Connor's

> back. Boom! That's for the first pediatrician who got mad at me

> for putting Connor in Early Intervention without asking his

> permission first. Kapow! That's for the geneticist who told us

> Connor was normal to our faces, but then told his nurse he thought

> he was going to be retarded (which we overheard in the hallway!).

> Smash! That's for the O.B. who completely missed Connor's IUGR

and

> then asked me if I started smoking during my pregnancy. Can you

all

> understand why I'm having anti-Doc sentiment here?

>

> Deep Cleansing breath (whoosh).

>

> So, my question to you all are about teeth and needles. Are we

> making to great of a sacrafice for Connor's teeth with this night

> time bottle?

>

> And, since we will be starting Growth Hormone in about three

months,

> which drug and which injetable do you all recommend. I've heard

> good things about Nutropin and " Injectease sp? " Comments please.

> This doc will defer to my preferences and I found out already

which

> drugs my insurance will cover.

>

> Oh, that leads to another hiccup in Connor's care. The cost of

meds

> in our insurance program are tripling next year. Yes, you read

that

> right. TRIPLING! Multiply that by four because there are other

> family members on regular medication. So, we are having an

insurance

> crisis. Due to this, we started the process of applying for

> Medicaid and services for Connor. We've only been waiting a year

> now to be seen by the intake Social Worker. I know for a fact

that

> three other RSS kids in the state of VA are getting Medicaid for

> their syndrome. My case worker and I can't even get our phone

calls

> returned.

>

> I think I need to go do that kick boxing thing again.

>

>

> Mom to Graham 7 ADD; Cameron 4; Connor 2 IUGR, RSS, Assymetry,

> Kyphosis, Periactin, Zantac, Prevacid.

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Hi ,

I love your idea about the blow up M.D. I know what my day dreams

will be filled with from now one…hehehe. I also understand your

insurance issues as well. We have 4 children and 5 out of 6 of us

are considered uninsurable because of a lovely blood disorder that I

have and passed on to my children. My husband owns his own company

so getting group insurance is very difficult. His partner's wives

all work at the hospital so they all have great insurance and average

kids so insurance isn't an issue for them.

Coby is also 2 and an " eater " . He has a twin sister so many of the

things we did with Coby is because we were doing them with Carlee as

well. We have always used high calorie formula. I mixed it when he

was baby on formula and then when he turned 1 we started using

Peptimen Jr. Now I also use whole milk with carnation instant

breakfast mixed in. Either way it is 30 cal per oz and this way he

feels like he is getting something different to drink. Nestle also

makes a high cal juice, but we have not tried it yet. We took Coby

off the bottle just after 1 yr. He was drinking just as much out of

the cup and Carlee was already off the bottle so the transition was

very simple for us. Coby is also on Periactin. We don't push food

on him, but he likes to eat so we don't have a problem with him

eating with us at meal time, but through out the day I am constantly

giving him a cup of his milk. I add different flavorings for a

different taste and use a variety of cups so that he feels that he is

getting a choice in what he is drinking. Dr. H felt that he was

getting more then enough caloric intake by doing this. Coby has not

had any bs issues through the night and although he STILL gets up at

night I do not give me a cup until he wakes in the morning.

When we saw Dr. H in July at the convention Coby was 21 months old.

He had plenty of sub q fat and had reached a plateau on the growth

chart for his HC. She said that we needed to start GH. She

recommended Humatrope and to use a syringe. Because Coby was only 19

lbs at the time his doses would be changed by such a small number

that the pins could not be dialed in that exact.

We have been doing the injections now for over 2 months. It became

an easy routine very quickly. I started with the inject ease, but

because Coby's skin is so thin I started injecting the needle

myself. He doesn't even mind the shots anymore. I don't even have

to hold him. He just lies across my lap.

Good luck and have fun with your blow up doll…hehehe!

le, mom to:

Shye almost 10, Brock 8, and Coby & Carlee 2

Coby's new stats: 20.2 lbs, 31 ¾ inches, Periactin & Humatrope GH

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,

I understand your frustrations with your Drs so well!! I love our GI. She is

wonderful at listening to us, and taking suggestions, etc... BUT whenever we

bring up the problem of being too high on the weight-for-height

chart, she gets defensive. And bring up Dr H, and she gets downright

hostile! " Why " , she wants to know, " is an Endocrinologist sticking her nose

into a GI problem? " We tried explaining to her that Dr H treats the " whole "

child, and have even gone so far as to describe Dr H as an Endocrinologist

with a sub-specialty in GI, but she doesn't want to hear it. GI is her

field, weight gain is her domain, not that of an Endo!! Why can't these Drs

understand that RSS affects the " whole " child, not just the child's growth??

Or that all of the systems are interlinked??? I actually had a PICU Dr tell

me that I obviously didn't understand RSS. It only affected 's

growth, not his eating, not his breathing, not his weight!!! Right!!

So take out your blow up doll and give it an extra kick for me!!

As far as GH goes. uses Genotropin. We were supposed to use a pen

device but Dr H insisted that we change that to a syringe. The Inject-Ease

just makes it easier for people like me, that HATE giving shots!

Hugs for you all!

Pat (g-ma to , RSS, 35 months, 23.9#, 32.2 " , G-Tube)

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your son has been on GH for almost a year. Where was heron the percentiles

and where is he now? Any side effects?

Re: Needing advice to make an informed choice

>

>

> Hi ,

>

> Yes, I agree with you. If Connor is an eater, then I would

> absolutely sacrafice the teeth v the gtube. was not an eater,

> so for us the gtube was necessary.

>

> As for GHT, until age 2 growth is controlled by nutrition, not GH so

> starting before age 2 (unless GH deficient) is a waste. In

> addition, if Connor is still experiencing catch-up growth based on

> nutrition, it is too early to start GH. With us, Dr H waited until

> 's growth fell off from the tube and catch-up before starting

> us on GH. We started GH 1/2004 when was just about 4 years

> old. The GH has helped with both growth and weight.

>

> We use nutropin with the injectease and find it very easy.

>

> As for the kick-boxing, I have been taking karate for 8 years now.

> There are definitely days when a particular doctor is my " target. "

> Of course, we are spoiled since we are in NY and able to see Dr H

> every three months.

>

> Good luck,

>

> Judith, Steve, (RSS) and (non RSS) 4 1/2 year old twins

>

>

>

>

>

>

>

>

>

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Hi Debbie,

wasn't and still isn't on the charts. When he started GH he

was 3.86 standard deviations below the chart for height and 3.68 for

weight. After 9 months on GH, he is 2.91 standard deviations below

the chart for height and 2.78 for weight. As you can see, he

improved by .9 standard deviations after 9 months on GH.

He is currently growing at a rate of 4 inches per year. Average for

his age is 2 inches per year. Therefore, he is experiencing not

only normal growth, but catch-up growth since starting GH.

Good luck,

Judith, Steve, (RSS) and (non RSS),

> your son has been on GH for almost a year. Where was heron the

percentiles

> and where is he now? Any side effects?

> Re: Needing advice to make an informed

choice

>

>

> >

> >

> > Hi ,

> >

> > Yes, I agree with you. If Connor is an eater, then I would

> > absolutely sacrafice the teeth v the gtube. was not an

eater,

> > so for us the gtube was necessary.

> >

> > As for GHT, until age 2 growth is controlled by nutrition, not

GH so

> > starting before age 2 (unless GH deficient) is a waste. In

> > addition, if Connor is still experiencing catch-up growth based

on

> > nutrition, it is too early to start GH. With us, Dr H waited

until

> > 's growth fell off from the tube and catch-up before

starting

> > us on GH. We started GH 1/2004 when was just about 4 years

> > old. The GH has helped with both growth and weight.

> >

> > We use nutropin with the injectease and find it very easy.

> >

> > As for the kick-boxing, I have been taking karate for 8 years

now.

> > There are definitely days when a particular doctor is

my " target. "

> > Of course, we are spoiled since we are in NY and able to see Dr H

> > every three months.

> >

> > Good luck,

> >

> > Judith, Steve, (RSS) and (non RSS) 4 1/2 year old

twins

> >

> >

> >

> >

> >

> >

> >

> >

> >

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thank you for the info. so how old is he? how much does ne weigh and how

tall is he? any side effects?

Re: Needing advice to make an informed

> choice

> >

> >

> > >

> > >

> > > Hi ,

> > >

> > > Yes, I agree with you. If Connor is an eater, then I would

> > > absolutely sacrafice the teeth v the gtube. was not an

> eater,

> > > so for us the gtube was necessary.

> > >

> > > As for GHT, until age 2 growth is controlled by nutrition, not

> GH so

> > > starting before age 2 (unless GH deficient) is a waste. In

> > > addition, if Connor is still experiencing catch-up growth based

> on

> > > nutrition, it is too early to start GH. With us, Dr H waited

> until

> > > 's growth fell off from the tube and catch-up before

> starting

> > > us on GH. We started GH 1/2004 when was just about 4 years

> > > old. The GH has helped with both growth and weight.

> > >

> > > We use nutropin with the injectease and find it very easy.

> > >

> > > As for the kick-boxing, I have been taking karate for 8 years

> now.

> > > There are definitely days when a particular doctor is

> my " target. "

> > > Of course, we are spoiled since we are in NY and able to see Dr H

> > > every three months.

> > >

> > > Good luck,

> > >

> > > Judith, Steve, (RSS) and (non RSS) 4 1/2 year old

> twins

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

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