Re: weight for height--> Reah

[Guest guest]

Hey Reah!

Cyprohepdaine is the generic form of Periactin. I think periactin

was taken off the market in north america (I may be wrong but that's

what I think Dr H said).

Ok, now take a deep breath... let it out... Good! You're doing

everything just right! I know it's overwhelming to be bombarded

with all of this information and feeling like there's more you could

be doing but you're doing everything you can for Chloe!! You aren't

the reason Chloe doesn't grow well, RSS is the reason Chloe doesn't

grow well.

As for the weight vs. height charts, I'm with the understanding

that RSS kids should achieve caloric catch up growth before starting

GH. Children under 2 grow on calories not growth hormone, so as Dr

H is so fond of saying " our kids can't grow on air " . If you can get

their weight vs. height up to around 15% they should be able to

sustain better growth on GHT.

Now that being said... At this years convention Dr H said she's

changing her views on the whole 15-20% thing. That was her findings

in the past and it just can't be stated a rule for all kids. Every

child is different so they have to be asessed on an individual

basis.

So I'd say we can't get hung up on it as a hard and fast rule. I

know it's terribly hard not to do that, I have my own issues there

also!

Please, please remember that you're already a great mom to

Chloe!! God picked you to be her mom for a reason!!

Please let me know if this post is understandable... (and someone

else correct anything I may have gotten confused about!!!)

Biggest hugs ever!!

Leah, mom to and Olivia (RSS)

> >

> > Well I finally found the time to get to the growth charts. How

> disappointing. The charts don't go high enough for Adam.

> These " weight-for-stature " charts only go to 120 cm and Adam is

138.

> 3 cm and 33.2 kg (well he WAS back in June).

> > I was looking forward to figuring this out. Now if I go all

the

> way back to when he was under 120 cm. (I have one measurement at

9

> years, 7 months old) He was 117.9 cm and 21 kg that puts him

smack

> tab in the middle of the 25th to 50th percentile.

> > So does that mean it's too much? Or just right? I was just

hoping

> he would make the 15th.

> > Anyone have any thoughts on where I can get " bigger " charts

and/or

> what it means to be in the 25th-50th percentiles?

> >

> > Deb

> >

> >

> >

[Guest guest]

Hey Reah!!

I have to second everything that Leah said. Take a deep breath.......let it

go....and relax!! There is absolutely no way ANYONE could take in half the

info that been floating on the site, and understand it all in a week!! Bran

is almost 4 and I'm still learning something new all the time!

In the beginning we concentrated on the problems of weight gain,

hypoglycemia, and growth.....

It will ALL come with time, but it does take time to learn. It sounds like

you're doing a GREAT job advocating for your daughter so far, and I'm sure

you will continue to do so.

One thing I did want to point out is that the first Endo we saw, was only

willing to commit to a " trial run " of GH. Citing OLD RESEARCH, she didn't

believe that GHT would make all that much difference for Bran, and was only

willing to commit to a period of months. If she didn't see remarkable

results in that amount of time, she was not willing to continue with GHT.

The key to the problem was the old research she was working from! There are

plenty of NEW studies out that show good results with GHT. If you really

like your Endo, I would invest in the convention tapes, and look for studies

that prove GHT works in RSS/SGA kids, and share the info with your DR. Good

Drs are hard to find!!

Good Luck and just keep on reading. It will all begin to make sense.

Pat (g-ma to , RSS, 3 yrs 10 months old, 25#, 34.6 " , G-tube, GHT)

[Guest guest]

Hi Reah,

I plotted Chloe and she's just under the 3rd%ile weight for

height. That's not too bad!

I'm not sure how to get in touch with Dr. H though, since we live

in Canada we only get to see her at the convenions in Chicago every

July. Will your insurance cover a trip to NY to see her in office?

I can't remember if you've booked with her or not, sorry. If it's

only about her weight at this point though I wouldn't worry too much

about it because she's not too far down on the chart.

For all of the growth charts I like to go to the CDC website, if

you just do a google search with " CDC growth charts " it will take

you there. I just click on clinical growth charts and scroll down

until I get to the 3rd - 97th %ile's.

Hope that helps a bit!

Leah, mom to 10 and Olivia 5yrs 11mths, 22lbs, 36 "

> > >

> > > Well I finally found the time to get to the growth charts.

How

> > disappointing. The charts don't go high enough for Adam.

> > These " weight-for-stature " charts only go to 120 cm and Adam

is

> 138.

> > 3 cm and 33.2 kg (well he WAS back in June).

> > > I was looking forward to figuring this out. Now if I go all

> the

> > way back to when he was under 120 cm. (I have one measurement

at

> 9

> > years, 7 months old) He was 117.9 cm and 21 kg that puts him

> smack

> > tab in the middle of the 25th to 50th percentile.

> > > So does that mean it's too much? Or just right? I was just

> hoping

> > he would make the 15th.

> > > Anyone have any thoughts on where I can get " bigger " charts

> and/or

> > what it means to be in the 25th-50th percentiles?

> > >

> > > Deb

> > >

> > >

> > >