Some Info

I just wanted to point out a blenderized formula with 32 cal/oz on
http://www.tdh.state.tx.us/wichd/nut-txt/formula1-nut-txt.htm.
Compleat - Modified - RTU A
(Novartis)
Level: II
32 cal/fl. oz., blenderized, nutritionally balanced tube feeding formulated
from natural foods. Contains fiber. Conditions requiring regular tube
feeding. Conditions such as diarrhea, abdominal distention, constipation
and chronic pancreatitis. RTU liquid: 8.45 fl. oz. can
(24 cans/case)
107 cans 107 cans

No, it has:
water, apple juice, hydrolyzed cornstarch, pea puree, beef, green bean puree,
sodium and calcium caseinates, high oleic sunflower oil, soybean oil, peach
puree, MCT, mono and diglycerides, potassium phosphate dibasic, calcium
phosphate tribasic, potassium citrate, sodium phosphate dibasic, celloluse gel,
calcium hydroxide, magnesium chloride, sodium ascorbate, choline chloride,
cellulose gum, taurine, m-inositol, ferrous sulfate, zinc sulfate, alpha
tocopherol acetate, niacinamide, L-carnitine, calcium pantothenate, copper
gluconate, manganese sulfate, thiamine hydrochloride, pyridoxine hydrochloride,
riboflavin, beta carotene, BHA/BHT (to preserve freshness), vitamin A
palmitate, folic acid, chromic acetate, biotin, potassium iodide, sodium
molybdate, sodium selenite, phytonadione (vitamin K1), cholecaciferol (vitamin
D3), cyanocobalamin (vitamin B12).
15% protein, 35% fat, 50% carbs, 211ml/250ml water content, 380 mOsm/kg water
osmolality.
A description of it as well as many other formulas is given at
http://www.tdh.state.tx.us/wichd/nut-txt/formula1-nut-txt.htm

Thank you, everyone, for the messages regarding Max's surgery
today. It was more of an ordeal than we thought, but, then again,
what procedure with Max isn't, you know? At least we are home and
he is now resting comfortably. He has casts on both legs up to his
knees and cannot really walk on them. We have ordered a walker and
a wheelchair for him. Poor kid can't even go to the bathroom on his
own for now!
For those of you who know, my back is a bit better, too. It took
this unfortunate time to snap. I've never had back problems before,
but now I know why people complain and groan and moan when their
backs hurt. This is agony! I live for the muscle relaxers because
they help so much. At least I can walk around and it feels better.
Sitting, however, is another story.
So...Max and I will be sleeping on the family room floor tonight.
He's on an aerobed (it's closer to the bathroom than his bedroom
upstairs is to the one up there), and I'll be on the floor with my
feet on the ottoman again.
This family needs a vacation and a huge break!!!
Jodi

Lisa,
I know that we have been emailing each other privately because of
MAGIC, but I did want to mention what we are doing for Max, who also
has ADHD. Max cannot take stimulants not only because of the loss
of appetite, but also because he has Tourette's Syndrome. We have
found that Wellbutrin is a big help. My daughter takes it, too, for
the same reason. She has no other health problems other than hoping
to her parents let her survive being 16. That's another story...
Anyway, there are meds out there for ADHD that will not affect
appetite and hopefully not affect her cardiac condition. The
problem is that you may have to do the research. Have you searched
the web? There is a support group for kids with ADHD, but I cannot
remember the name...I think Jennifer Fazzolari told me about it.
Wait...It's something like ADD Helpline. You may want to try that.
Jodi

Thanks Inga for posting the link to this site. I haven't had a chance
to read through it all, but did read the article that talks about
giving water to tube fed kids. Do you give your son water? Colin only
gets about 3-4 oz. of water plus 30 oz. of pediasure. I wonder if I
should be giving more? Our doctors haven't told us to. Anyone else
with g-tube kids have input on how much water you give a day?
Thanks,
Emily
Colin (RSS) and Hayden - 16 mo. twins

Hi Craig,
I just hope the people making the funding decisions realize that RSS
and SGA should be included among the genetic reasons for short
stature (such as Turner's syndrome). What our kids are facing is so
different from children who naturally tend to be short because their
parents and/or other family members are smaller than average.
It worries me when articles like this appear since there's no genetic
proof/test yet for RSS.
Karen (Tyler, nearly 3 by adjusted age, 33", 21 lbs, and Daniel, 21
mos)

Hi Jodi,
I hope all goes well for you and Max.
I hope it is a complete success and that Max heals quickly and
completely.
Good Luck.
Ken M
:)

Lisa
I am sorry to hear about all the problems you are facing right now. I also
know what it's like to be the teacher and have no one know anything about
RSS. I hate having to switch doctors and haveing to explain everything
associated with RSS. I don't live near you I live in Florida so I can't help
you much but, there are alot of people in this group who can help and know
alot more information on how to find things to help. I'm am still new at all
of this. Anyway Good Luck with everything and Keep Smileing I hope someone
can help.
Jackie (Kyersten 13lbs 1oz, 18 mon.)

Hi, I just joined the group. My story is.. My daughter was diagnosed
about 4 yrs ago with RSS. It hasn't been much of a problem until
the last year. Her appitite has almost completely diminished,she has
a cardiac condition, and she has just been diagnosed with ADHD. The
doctors in my area do not want to treat the ADHD because they are
afraid the side affects of the medicians would decrease her appitite
more or worse cause hypertension due to her cardiac condition. She
has other characteristics of RSS but they haven't been a problem to
overcome, yet. I work at my area hospital and I have tried to
utalize my resources but no one has heard of RSS. The Genetisis that
dignosed her has since retired and we now face seeing ANOTHER NEW
DOCTOR. We have been through the mill, so to speak. We've been from
doctor to doctor with no success. We have even been to some
reputible hospitals. I feel as though I am the teacher. I'm looking
for anyone who may have information I can take with me to the Doctor
so I can get her treated for her ADHD. Her grades in school are
suffering severly. ANY HELP WOULD BE APPRECIATED! I have spoke with
the MAGIC Foundation already and they said to post this here. I have
the information for the convention in July an am hoping to make the
trip. I live in South Central PA so anyone in the Philli or Pitts
Area would be close for me.
Thank You,
Lisa

Hi Carmen,
I have no more info than you do. You have to call your Internet
Service Provider.
Ken M
:)

Hi Cindy,
One more note to add to what Katy already wrote. Here in New
Zealand, they give you an extra seatbelt that you slip through your
seatbelt and then belt around the child.
From what I've heard, US planes should carry these extra belts too -
to use for people who are too large for the normal seatbelt to fit
around. I'd bring your own strap to be on the safe side, but it's
worth asking the flight attendants if they keep these extra seatbelts
on hand.
Karen (Tyler, nearly 3 by adjusted age, 33", 21 lbs, and Daniel, 21
months)

This is a link which I found off the New Visions website with probably the
most exceptional article about feeding and nutrition I have yet read -
thanks to Barabara and her link in her article about Ethan on the feeding
board. Perhaps it would be a good addition to our support group's library?
http://www.new-vis.com/fym/p-feed.htm
Inga

Cindy,
I'll be praying!
Love,
Inga

http://www.new-vis.com/
I highly recommend under the 'Feed Your Mind section to click on the
Information Papers then Feeding for some very informative articles. When I
tried to go directly to the link, I had access problems, but somehow it is
working this way.
Inga

Thanks, Cheryl. Max is scheduled for 7:30 tomorrow morning. He is
so excited about this! I wish I were. I just feel so bad that he
has to go through this in order to feel better. But we are ready
and the day is finally almost here!!!!
Unfortunately, my back has chosen this time to go into spasms for
the first time in my life. Now I know why people complain about
their backs being out. I am in excrutiating pain!!! I went to the
doctor who gave me meds, but he said I will be in pain for two or
three more days. Great. Max and I can moan and groan together. I
have to be on the floor, with a pillow under my head, a heating pad
on my back and my legs resting on an ottoman at a 90 degree angle.
Thanks for remembering Max. I will let you know how it goes. I
have spoken to all the specialists and everyone is ready for
anything that could come up.
Jodi

Hi,
Brendan had an appt. today in GI. The doctor felt a lump in his
abdomen. She thinks it's probably nothing but wanted an x-ray. The
results won't be back until Monday. As you're in church this Sunday,
please send up a word to the big man for my little guy. I'll be a
wreck all weekend.
Thank you.
Cindy

Hi Ken,
Just wondering if you might know why I am not getting messages. I
checked my membership and it is set on individual emails, but I am
not receiving any messages. Any idea what I can do?
Thanks,
Carmen

My son Ryan has a G-tube and has had one since he was 2 years old (he
is now 5). My son goes swimming and bathes as much as my non-RSS
daughter. In fact, Ryan has swim lessons every year. We never cover
his button up and just keep an eye on it like normal. No extra care
for the button site. He wears his regular swim trunks and does just
fine.
I remember being extra careful the first few months of having the
G-tube, but over time, it became old hat and never is a problem. We
do notice now, however, that his button stays "healthier" looking when
he actually does soak in the tub for awhile. I don't know if it is
the warm water around the site or what, but it helps him. But like I
said, he's had his for 3 years now.
If you have any questions about the G-tube, please feel free to email
me tclfam@....
Stacie
Mom to daughter, Taylor 8 (non-RSS) and son, Ryan, 5 (RSS) with
g-tube, assemetry, and cute as a button! :)

Hi all,
Sorry I sent this message twice, but I never received the first one
so I thought it didn't go through.
Carmen

P.S. I think I heard that kids go swimming on a g-tube, often using
one-piece suits (like wetsuits for boys, too). I wonder if this is a
problem for people? Hey one idea that might help if your child likes to
swim OR PLAY IN THE TUB... - perhaps one of those waterproof bandages over
the site would be useful? Does anyone have experience with this???
Inga
......
We had a problem with letting Tim soak too long after his g-tube surgery
(within the first month anyway - I forget...). It looked like he had pus
oozing out, so we called the pediatrician who sent us to ER - they
discovered that it was OK, kind of like how your fingers get white after
soaking but the tissue next to the tube is more so and looks like liquid
oozing out. The thing is that too much of this might loosen the fit of the
tube and allow acid leakage. So waht we did actually helped with our son's
aversion to getting his hair washed to some extent - we put a hand-held
shower head and a rubber mat in his tub, so we actually shower him.
Washing the site regularly is important, just not soaking.
Inga

I am recording the special as I type. It should be good.
Jodi

Yea for Storm!!!! You must be so excited about starting the GH. I
know that he lost weight, but the gh will help him gain it back.
Now you can tell us your needle stories, too. We all have them.
Good luck!
Jodi
--- In RSS-Support@y..., "Dustin & Carmen Snyder" <stormalc@i...
mailing our Gh and we should receive it on Wednesday! (We didn't
even know we were approved yet!)

On Oprah today there was a doctor talking about learning differences
and difficulties I thought was very interesting. He has a special
on PBS tonight called Misunderstood Minds. He also has a book called
A Mind at a Time by Levine.
cindy

We just got a call from the home health pharmacy saying they are mailing our Gh
and we should receive it on Wednesday! (We didn't even know we were approved
yet!)
Carmen, Mom to Storm, age 6y 7m, 33 pounds(lost 2 pounds during the ph study!),
42"

Storm had an endoscopy and ph study on Tuesday. The endoscopy showed NO damage
or scar tissue! We were very happy about that. They did several biopsies to
check for damage that you can't see. Storm got to take pictures of his stomach
to school with him today!
We will get the results of the ph study in a couple of days. It was hard, but we
survived. He threw up in the middle of the study, which is probably a good thing
so they could measure if it was caused by reflux or not. (Not really sure how
the whole thing works).
Storm was a real trooper through the whole thing! Next Monday he has a stomach
emptying scan and my daughter Paisley (non-RSS) has to have her back x-rayed to
see if she truly has scoliosis!
Thanks for all your support!
Carmen

HI Jackie,
Sorry about that.
I should have addressed it to Cara.
Ken M
:)

In a message dated 3/27/02 12:45:49 PM Eastern Standard Time, kkm@...
writes:

Jennifer,
We homeschool, so he eats orally pretty much when he wants, and he doesn't
generally go over 4 hrs without a tube feeding - we've tried back and forth
between using the pump and not at night, but after reading the web-page from
that feeding group about how important bowel rest is, I'm thinking of trying to
get those cals in during the day. Since getting the tube in January, I've gone
from always using the pump, to faster but longer feeding with breaks, to 5
minute boluses of whole 8 oz feedings, and now back to using the pump at the
fastest rate of 600cc/hr to get the 8oz in a fast but more moderate amount of
time, and adding 1 tsp of Udo's oil after talking to a nutritionist yesterday.
I think it might be do-able... We haveyet to settle into a definite routine,
but the webpage has given me some ideas
(http://www.new-vis.com/fym/p-feed.htm),
and I have ordered some of the supplements they recommended as well.
Inga

Just a quick correction:
The RSS Gathering is Sat., April 20th starting at 2:00 p.m. until 7:00 p.m.
Jodi is right there is a $4 charge at the door but covers pasta, salad,
dessert, and drinks. Any extra proceeds will benefit the RSS MAGIC
Convention Scholarship Fund. Contact Mark or Nancy Polny to RSVP by April
1st at markmarknjj@... or (508) 429-3566. This is Marks' 3rd year of
hosting this and we've been fortunate to attend each year. It's an informal
gathering to give RSS folks a chance to chat and the kids to play. Mark
always has helpers from his church there to play with the kids while giving
us parents a little break.
Cheryl

Jenny - can you send me info to my private email
magicrss@...? days/dates, times, location, etc? I may try
and come over. Jennifer

Stanhope on Management and Research. Also a session from Jackie
Blissett. This will be focused around feeding difficulties and
psychological issues relating to short stature. Another session will
be hosted by a Genetist. And finally a members session which we are
hoping some adult RSS will be in attendance.

Well, Leslie brings up a great opening for an announcement I have to
make.
As she said, at last year's convention, we made a list of
our "wishes" for the MAGIC RSS Division 2002 business plan. One of
those wishes was to contact all 50 states and make a listing of all
available funding resources available to families to attend medical
conferences such as the MAGIC Convention.
Well, I asked Alison Howard, an RSS mom of Jake, and she
enthusiastically volunteered to take on this project. She has spend
the last couple months calling all states, and getting answers from
as many as possible. She has put together an incredibel Excel
database which lists every available program (many NOT based on
income) by state, and the steps you take to apply for the funding.
WOW!!!! Congrats to Alison!!! The title of the document we are
calling oh, shoot, I think I named it "Funding Resources for Medical
Conferences." Anyways, as a member of MAGIC, you can get a copy free
by email or by mail. Simply call MAGIC at 800-3MAGIC3 and request a
copy. WAIT for 2 more weeks for Alison to finish it.
Just one more benefit as a member of our amazing nonprofit!!!
Please, whenever you call the MAGIC office, tell the office staff
thank you. They are 4 dedicated women who work unbelievable hours at
minimal pay or volunteer hours. They have gone above and beyond for
our RSS division - I work them pretty hard, with the scholarship
program, our fundraisers, our mailings.... hee hee.
Jennifer

Inga - Sorry for the dumb question! Somehow I missed that he just
got his G-tube. Way too much happening here. I wish I could answer
your questions, but I have no experience in the G-tube area. But I
KNOW that plenty of people on this listserve have lots of experience.
I have heard that the hard part is getting the child with a G-tube to
eat, although maybe this is just with younger ones. When your son is
at school, for a 6-hour day, what is his eating schedule? Is he only
getting lunch? Jennifer

Hi Jackie,
The chat section for for on line real time chatting. It is rarely used.
Since many people are at work or are out taking kids back and for to schoo
etc, they often just send a message and then read the replies later in the
day.
There are a few ways to send and receive messages.

Hi, this is the first time for me to chat on this rsssupport line. i
never saw the picture, but my little girl was so little that i can
just imagine she looked similar at around 18 months. She's seven
now, i really need to find people to help me. I couldn't type that
many words on the other little section that said chat. it said i
typed too many words. I don't know what i'm doing, can you help?
cara
Jackie (Kyersten 18 mon.)

Hi everyone
I just recently received a paper from MAGIC about the scholarship
program (it has storm's picture on the front) and when I opened it up
and saw the group picture of everyone on it and there's a little boy
standing in the front with a pair of shorts overall's on, he's right
in the front. I was in shock for a moment because he looks exactly
like my daughter. My husband thought it was her for a minute. I was
just wondering if anyone knows who this is or if he is any of your
kids. It was just so strange to see someone who looks exactly like
her. Anyway, it was just nice to know that she has other people just
like her and that she's not alone.
Jackie (Kyersten 18 mon.)

We usually have a reasonable turnout. If it's your first convention I am sure
you will find it very interesting.
We are hoping to have a joint session with Jeremy Kirk and Richard Stanhope on
Management and Research. Also a session from Jackie Blissett. This will be
focused around feeding difficulties and psychological issues relating to short
stature. Another session will be hosted by a Genetist. And finally a members
session which we are hoping some adult RSS will be in attendance.
Jenny-CGF Membership Secretary
Mom to Georgia RSS 4 1/2

Stacy,
Yours is the first case of hydrocephalus in an RSS child that I have
heard of. BUT that does not mean it does not exist.
Probably what the neurosurgeon will want to do is put in a shunt to
drain the fluid from his brain. That will alleviate the problem,
but the shunt itself will need some care. We have several children
at school and at the camp where I work who have shunts and you would
never, ever know it.
I know this is scary, but try to relax and get the facts from the
doctor. It's another hurdle to jump over, yet the effects should
not be negative. You have found it in time to prevent any damage it
could do to the brain. Like us, you have to go through "hell" to
get there; however, in the end, it will be okay.
Jodi

Just wondering if anyone is planning on attending?
Michele
Mother of Lily who hasn't grown a mm in 9 months 8-(

Hi Ken,
Alice is on Novotropin Simplex from NOVO NORDISK A/S (Denmark)
Nonjia

Hi everyone,
We have started the process of getting Kevin approved for growth hormone.
Our health insurance deals with 2 companies for growth hormone. One is
Pharmacia and the other is Novo something.
Anybody have any experience with either of these and what the the rest of
the name for Novo xxxx ?
Ken M
:)

Dear Denise,
Please email me privately at magicrss@.... I have a 13 year
old son with RSS. I can give you a lot of information about it. I
can also tell you a lot about MAGIC and what it has to offer.
I'm asking you to email me privately so that I don't take up too
much space on this listserve. I want to answer your questions, so
keep them coming! I'll do what I can.
By the way, where do you live?
Jodi

http://news.bbc.co.uk/hi/english/health/newsid_1885000/1885064.stm
This is a link to a BBC online news article from last week on Growth hormone use
in the UK. I am not too sure exactly what to read into it.
Craig.

I was wondering if there is a grandparents/baby-sitters guide to
RSS. Something that gives the info in layman's terms. With info on
important things to know when baby-sitting (i.e. nutrition, fasting
hypoglycemia, even how to treat a RSS grandchild like any other
grandchild).
My children have two sets of grandchildren who are "nervous
nillies" about my RSS child. I thought something like this my help.
Especially the treating of the RSS grandchild like their other
grandchildren.
Also, is it going to posssible to get a list of families and a
short bio on those who are attending the MAGIC convention? It will
be our first time attending and it might be helpful to have a little
info on whose going and their history. I'd be more than willing to
write up my own.
Thanks,
Stacy (mom to Jesse(non-RSS), 4, and Christian(RSS), 18 mos.

You'll get a lot of info by reading through previous messages that
people have written. The MAGIC convention is coming up in July and,
if you can attend, that would probably be one of the best ways to get
a lot of information all at once. Plus your son would have the
chance to be seen by doctors who are true experts!
Since your son is nearly 10, you'll probably want to look into growth
hormone therapy and the possibility of delaying puberty to give him
more time to grow. From what others have written, it's very
important to make sure a doctor is examining him regularly for signs
of puberty since RSS children often go into puberty early.
Other people with older children will be able to tell you more about
this ... but you can always do a search on "puberty" and "growth
hormone" to read previous messages.
Hope you find the help your son needs.
Karen (Tyler, nearly 3, 33", 21 lbs, and Daniel, 21 mos)

Hi Cindy,
We've flown a bunch of times with the kids as infants and toddlers. ONe
trick I've learned is to roll the stroller right on up to the gate, with the
child inside, and then ask them to gate check it (NOT the child!) . As far
as carseats, we simply ask them to check it (they'll put it in a plastic bag
for you) and then pick it up at the other end. Saves a bit on the daily
seat rental, but if you want to minimize the amount of stuff you are
carrying, you could leave it home.
As far as holding child in lap, I'm going to get on my bandwagon: You
absolutely must figure out a way to secure your child to your lap...e.g. a
front carrier, perhaps one of those specially made harnesses ...And, you
can't put a seatbelt around the two of you...turbulence would basically slam
your body weight into the child if you did that. Hopefully, the plane won't
be full and you can belt in your child next to you, but if not, figure out a
way to secure your child to you. During turbulence, even Mamma's strong
arms may not be enough to hold a child to her lap!
Another thing we have done is bring the carseat right up to gate, and if
there is room for a seat next to us, we bring the carseat on board. If
there isn't, you can ask them to gate check it.
Hope this helps!
kATY

Mrs. Yendt,
I would suggest that you check out www.magicfoundation.org they have tons of
info on RSS and other "lack of growth" syndromes!
Good luck!
Carmen, Mom to Storm age 6y 7m, 35 lbs., 42 inches

Hi,
Do we need to let someone know ahead of time if we want to see Dr. H
at the convention or do we just kind of stand in line when we get
there?
Will we be wearing an RSS badge or something for ID so we can find
eachother?
Also, I'm not an experienced traveller, so this may sound stupid,
but my son will be 2 the end of July. He's going to be on my lap in
the plane so I won't be bringing a carseat. Can we rent one at the
airport? How about a stroller, can I check it in if it's bigger than
an umbrella stroller?
Thanks.
cindy

It has been recently suggested that my son, Dennis, may have RSS.
Dennis is 10 years old in May, was born with one leg larger than the
other (1-inch). The difference in size now has grown to 4 inches.
Dennis weighs 48 lbs and is 117 cm in height and has a very poor
apetite.
Dennis has the triangular face with low set ears, has been diagnosed
with ADHD and has numerous allergies. I really need to get as much
information as I can about what my sons options are (medications
and surgery)
Please help!!!!!!!
Sincerely Mrs. Denise Yendt.

This is a webpage for the feeding book Cheryl posted about:
http://www.pbrookes.com/store/books/kedesdy-3165/
Inga

Hi Stephanie
To be honest I'm really not sure if his improvement is due to the
homeopathy,But when he went back to the Homeopath for the second time he was
put on daily tablets[initially it was the three sachets of powder] and for
the first three days he was dreadful[was it you that told me he could get
worse before better].It really showed just how much he has improved and
makes it difficult to believe that he could improve on his own so quickly.So
at the moment I think i'm converted[is there a cure for miserable
husbands!!!]
love to sapphire
Joanne

Leslie,
Jake had the PEG placed in August 2001 and the mic-key
placed a few weeks ago. He had a little blood drainage
the first day or so. The procedure itself, I was told
doesn't hurt to replace (he had conscious sedation)..
although I was told it is pretty barbaric. He was
sensitive at the tube site for a few days. That
combined with nervous parents made the first few days
using the new button a little scary. But, after less
than a week things were great him and us. It was a
great decision to make the switch.
One thing that helped a great deal is reading a book
called "Franklin Goes To The Hospital". On one of the
last pages there is a picture of Franklin (a turtle) on
an operating table, hooked up to an IV. We called the
IV fluid Franklin's milk (like Jake's pediasure) and
pretended that the IV line was his feeding tube. I
changed all the words in the book, saying that Franklin
needs a new "tube" and for the first time, Jake let me
touch the site and put in the extender tube for the
night without a fuss.
If you have any other questions, let me know.....I'm
only a three week veteran, but maybe I can help.
Best wishes,
Alison
--

Hi Vitoria,
Thanks for the suggestion about lists.
My wife is the list person in our family. We can't do anything
until she makes a list. She can't make a list until she finds her
last list to make sure she hasn't forgotten anything. The one thing
she always forgets is where she put her list. I think she keeps it
with her keys, where ever they are.
Ken M
:)

Carmen,
I recall you writing about his Z-Asymetry. Storm is the only other
child I have heard of with this. Dr. Harbison was the only one to spot it as
I had written. She was examining Jessie looked at her legs then turned her
backwards to look at the arm lengths then she started yelling......"WOW, look
at this so-and-so, and so-and-so, and all the fellow came running.....this is
so unusual, I've never seen this, look, look, look" all while my precious
little girl stood there in her undies." Dr. Harbison! She is enthusiastic!
Tactful?
Leslie

Cami,
I read the post that Jennifer sent to you regarding the conference in
Chicago and the scholarship and available funding for those who may need some
financial assistance. Another reminder don't forget to check Angel Flight
and the air lift programs available as well. Small aircraft and volunteer
pilots can help you to get to doctors appointments, hospitals for surgeries,
conferences, etc for FREE or nominal charges. It is amazing the number of
good people out there who want to help. Our own Jennifer Salem among them.
It is truly amazing to me the amount of work that Jennifer and others have
done in their effort to help others to attend the conference. They were able
to give to over 25 families last year! Truly amazing.
I just wanted to remind everyone once again this year that there is
also funding available for attending the conference through your state
government. It is available and very easy to apply for AND is not income
based. It is available to support families who want to help their children
of need. I threw my hand up at last year conference to try to find a
national listing for our RSS members who wanted to apply. This has proven
very difficult. I think impossible. For each state has this money allocated
a different way and their doesn't seem to be a central agency or contact.
But I will try to help anyone individually to locate the correct agency in
your state -if you think I can be of help email me directly.
As for Virginia and how I found out about this available money- I
started with the local Early Childhood Intervention Agency. You can probably
get this number/contact from your local hospital or NICU if you don't know
about it. Ask to speak to the director of the program. Explain to them
about your child's RSS or SGA diagnosis and tell them of the Growth Disorder
Conference in July in Chicago. Ask who or which agency handles requests for
funding assistance. In Virginia it is called the "Family Training Fund."
Here in Virginia the application is VERY simple, the approval process very
timely, and the program very generous. Financially our family doesn't
qualify for any support anywhere, due to income level, but this fund
reimbursed us $800 for attending the Chicago Conference! Reimbursement can
be for airfare, conference fees, hotel, meals, taxi's, etc. It is great and
I highly recommend anyone to check it out.
Good luck to anyone trying to locate this available assistance. If I
can be of help I will be......just email me. See you in Chicago!!!!
Leslie
(Mom to Jessica- 4 years, 21 pounds, 35 inches, Periactin, RSS)

Joanne,
It is great to hear about your success with Christian, your patience and
relentlessness has paid off.
I hope things are going well with the rest of the family too.
I just wanted to know what effect, if any, the homeopathy has had on
Christian's attention etc. Can you attribute any of your success to that?
Kindness always
Stephanie & Sapphire

Victoria,
Thanks you so much for your message. I don't feel like a pioneer,
just a normal mum.
Unfortunately, you only got to read the end of the original message I
sent, as the original message was sent to the wrong address and it
didn't appear on the list!!!
You never got to read that Andrews' Endo appointment was last Friday.
I didn't propose the theory or treatment, (it would take me 2
lifetimes to come up with something like that). It was Andrews'
Specialist who suggested this medication, 12 months ago to help start
puberty. It has taken us that long to decide whether to go ahead with
it or not. His specialist was also the one who told us of the
benefit this drug 'appears' to be having on girls with Turner
Syndrome, and some children on GH. I don't think there is any
conclusive evidence avaible yet, it is more of an observation.
You know what Doctors are like, they don't like using language that
commits themselves, so I heard a lot of "it appears", "it may well
be", "we have observed in recent years", "latest studies are
suggesting/indicating" ect last Friday.
At the end of the day I guess we are pretty lucky to have such an in
tuned Dr. who understands so well why we deliberate over treatment
choices and options avaible.
Adrianne

Victoria,
The article I found is entitled, Anabolic Effects of Growth Hormone Treatment
in Young Children with Cystic Fibrosis, by Ramin Alemzadeh, Lori Upchurch, and
Vincent McCarthy, from the Journal of Americal College of Nutrition, Vol. 17,
No. 5, 419-424 (1998).
Some quotes:
"Almost one-third of children with CF are below 5th percentile for wieght and
height. Intensive nutritional supplementation may not result in sustained
improvement in weight gain and linear growth."
"Humatrope was administered to five children with CF (3 males/2 females) for an
average period of 2 years."
"All patients were maintained on caloric intake of 1.3-2.0 times the
recommended daily allowance."
"GH treatment improved weight and height scores (-0.11 plus or minus 0.05 and
-0.94 plus or minus 0.18, p<0.01) significantly. The delta Z scores for weight
and height were significantly increased during first and second year of GH
treatment (p<0.02). Also, the average values of IGF-1 and IGFBP-3 were
significantly increased as compared to pretreatment values (186 plus or minus
37 ng/ml and 3.0 plus or minus 0.22 mg/L, p<0.01)."
"GH treatment significantly improves weight and linear growth in young patients
with CF. These data suggest that anabolic effects of GH may be beneficial for
treatment of malnutrition in children with CF."
"The known anabolic effect of GH in promoting protein synthesis and tissue
growth is expected to improve nitrogen balance in malnourished and
hypercatabolic patients with cystic fibrosis."
Inga

Ken-
Wow, sorry to hear of your "issues". Through all of this you still seem to
have a sense of humor. How is that at all possible? I know this sounds
trite, but things do have a way of working out. They may not work out fast,
but they do. If this is of any help, I write stuff down, make lists. That
way you can prioritize your obligations and fears. Try it. Just think of
the end goal (sell home, look for job, buy home, then work w/ school-
whichever order works for you), Good luck.
Victoria

Inga-
Don't apologize for your decisions. You've done what you think is the right
thing. Tim is so lucky to have you. Go to the convention when you think it
is right. Go w/ your gut, don't feel guilty.
Victoria

Oscar is on GHT, but he's not GHT deficient. We saw Dr Stanhope, then 6
months later his assistant. She reported that Oscar was quite tall for RSS
(because of tall parents), so no GHT. I demanded to speak with Dr Stanhope,
surprised him with my knowledge of RSS ( I think most of us do!), and he
then agreed to recommend GHT. BUT my local GP must approve it, (I think
because it comes out of local health authority budgets). Note, even if fund
holding practices, they can apply for special budget increases for GHT, so
don't be fobbed off. I know this only because my GP asked me if I would
wait 3 weeks to get into the new financial year.
It's a case of fighting your case without knowing ther rules (I don't know
if there are any - just personal opinions)
Andrew

Adrianne-
You are a very brave person and best of luck to you and your son. You have
obviously agonized over this decision, but sounds like you made a very
educated choice. I am amazed the length RSS parents go through (esp. on this
listserve) and how they only care about what is best for their child. It
seems that us RSS parents are so caring and sincere. It is people such as
yourself that gives other RSS parents motivation, determination and
knowledge. We learn from pioneers like you. Where would some people be w/o
Jodi and Jennifer? All of you "givers of information" are to be heralded. I
only hope that when my 6 1/2 yr. old son Zack benefits from knowlege I have
from people like you. I will be very anxious to see how your son does w/ the
new meds. It is a very interesting theory that you propose and it makes
total sense. Did you have any trouble getting a doc. to go along w/ you?
How did you learn of this drug and its positive affects for kids who take GH?
Good luck.
Victoria Felson

Debby
THis is a really interesting article - I found the abstract at the
following address
http://archpedi.ama-assn.org/issues/v156n3/abs/poa10265.html
Is MAGIC able to get hold of the full text version for us?????
You have to subscribe and pay to see it online!
Thanks again
Julia

Have 177 emails to go through, so I'm not sure if someone else has posted this
link yet. Seems very interesting.
Debby
GROWTH HORMONE THERAPY DURING CHILDHOOD ADDS ABOUT 5 CM TO ADULT HEIGHT
Children with idiopathic short stature can expect to gain about 4 to 6
cm in adult height if treated with growth hormone therapy, according to
a report published in the March issue of the Archives of Pediatrics and
Adolescent Medicine.
Reuters Health Information 2002
http://www.medscape.com/viewarticle/430117?srcmp=endo-031502
<a href="http://www.medscape.com/viewarticle/430117?srcmp=endo-031502"
Read it Here</a

Ken,
I can't make it better, but hang in there! Here's hugs for you and your
wife!{{{{{{{}}}}}}
Carmen

HI Leslie
Finlay had the PEG to Mickey conversion a few weeks ago.
It didn;t hurt him at all although I couldn't watch while they did
it!!!
He still has a bit of oozing from the site - and over
grown "granulation tissue" this bleeds really easily if it gets
knocked and doesn;t look very nice but as far as I know it is pretty
normal and you just have to keep it clean and dry and treat it with
silver nitrate if necessary. The only thing to watch for is
infection on the site but it would get pretty red and sore looking
and he might also spike a fever if this was the case.
Inga posted some really useful info a few weeks ago regarding care of
g-tubes - and one of the suggestions was using diluted eucoplytus oil
to treat the granulation tissue - I havn't actually tried it yet -
but I do intend to - also I have heard of people using Tea Tree oil
with some success.
There is also a web site called kids with tubes
www.kidswithtubes.org
There is info there on looking after the oozing etc and also about
the PEG to Mickey conversion.
We ahve found the Mickey to be fantastic - much more discreet and
easy to use - I'm sure you won;t look back once you have the
conversion!
Hope this helps
Julia
Finlay aged 28 months - 9.4kgs 78cms

Inga,
I don't know if this will help, but Storm was facing some of the same issues
when he was 4, (almost 5)
just before our first convention. I was concerned as you were, and I told him he
was going to meet other kids like him. That year he was still one of the
smallest at the convention, but you never would have known it. He came back so
much better for it. There were other RSS kids that were younger and yet still
bigger, but they were at least close to his size. His two best buddies that year
were Chris (age 10) and John (age 5 I think) At that time. It was great! I know
Storm would not mention to Tim that he was smaller, he would just accept him as
one of the RSS gang. He will also be starting gh soon (still waiting on
insurance), and has tests next week to determine if he needs a fundo. (If he
gets the fundo they want to go ahead with a g-tube also). So I think meeting Tim
would be great for him!
I hope you will come! I would love to meet you. If memory serves me correctly, I
think you were the very first RSS family to ever contact us! I also think you
were the one that told me about this list back when it first started (am I
right, do you remember?)
Well, thank you! And hang in there!
Carmen, mom to Storm, 35 pounds, 42 inches, 6 yrs. 7 mos.

Hi Ken,
If it brings you any solace -- when I read your post - it made me
chuckle, as yours regularly do, and it also made me feel that all of
my troubles are not quite so bad! (smile)
You and your wife seem to be extraordinary in your efforts, so please
take time to pat yourselves on the back now and then (just don't
aggravate your rash.) And you have kept your sense of humor (albeit
slightly twisted at times - but I like that)!
Hang in there - you are a great support for all of us here.
Sandy - Mom to Matthew - 34 mos, 35", 23lbs-ish.

Hi everyone,
I need to write a few of these things down to help reduce my stress a
little.
A lot has been going on here and I hardly know where to begin.
Let me start with Kevin's therapy. Last fall we stopped Kevin' s Speech and
OT therapy by the public school system. We did this for numerous reasons.
One of which was we learned that my health insurance would cover O/T and
speech therapy. There was a benefit limit but after much discussion we were
informed that because the school wasn't meeting his needs, the limit didn't
apply. So after much searching we found the right place for Kevin and he
started speech and O/T at a local hospital. Everything was going fine until
2 weeks ago.
Two weeks ago the hospital case manager told us to not bring Kevin for a
while because our health insurance had lost his file. The case manger said
not to worry she had a copy of all his records she would just fax them to
the insurance company and in a couple of days we could return. We called
every couple of days only to be told that the insurance company kept losing
them or sending them to the wrong dept. So Monday we called the insurance
company and we were told "No we haven't lost your file, your benefits have
run out." We explained how we had been given a waiver for this and gave them
the persons name we had arranged this with. We were told that was not her
department and she was not authorized to do that and Kevin's OT benefit is
used up. So, no OT !! Next we called the case manager at the hospital who
pretty much told us she lied, his records were not lost she just wanted us
to call the insurance company to get the bad news. I cannot print here what
my wife said to the case manager. I don't think we 'll be sending her
another Christmas card.
While this was happening on Monday and Tuesday, Kevin was evaluated for P/T
and Sensory Integration. Both evaluators have said we will have to wait for
there final report but he badly needs P/T and he has some significant SI
issues that need to be addressed quickly.
So now we have to go back to the school system which has failed him so
miserably so far. In addition to speech and OT, we have to ask them to also
provide P/T and SI therapy. When are going to fit this in with preschool,
speech and OT. The city we live in now has a history of doing as little as
possible for special needs kids, so we are going to have big fight to get
this for Kevin until we can sell our house and move to a nearby town which
has a good record of providing for special needs kids.
In the mean time we have found a house we like in a nearby town but some one
has made an offer on it. The deal is in trouble and we may get a chance to
make an offer if we can act quickly enough. The problem is it is just a
little beyond what we can do without making some big sacrifices. ( Anybody
got a winning lottery ticket they can spare ?)
We are also getting estimates from contractors to do some repairs on our
house. So they have been in and out during this week. Home repair
contractors are just such a fun bunch of people.
Earlier this month Kevin had a follow up appointment with his ped. endo. She
said he was doing great having grown 1/2" and losing 1.5 pounds after we
stopped periactin at her request. We tried to convince ourselves that he is
indeed doing good but I kept thinking what planet did she just return from
where she thinks 1/2 inch of growth and losing 1.5 pounds in 6 months for a
4 year old is good progress. Yesterday, we got her report in the mail with
the result of his most recent bone age x-ray. That showed he has advanced 8
months since his last bone age x-ray 14 moths ago. He has the bone age of 2
8/12 year old child but he will be 5 in about 30 days. In this report his
ped. endo now admits that it is time for growth hormone. Finally a victory
of sorts. Now we too are headed for the daily injection routine. This is
going to go over great with Kevin. It is hard enough just to get him to
brush his teeth. Now he gets to be stabbed every night also.
In the meantime, rumors are flying around work that there are going to be
more big lay offs.
I had strep throat twice in the last month and I now have a semi permanent
rash ( you think it might be stress related ?)
Today, both of our cars broke down and we had to have one towed to the
garage. We are driving 2 rentals.
Last, we just had the biggest snow storm we have had all winter. We got
nearly a foot of snow last night.
Gee, I wonder what April will be like?
Ken M
:)

Sure! Great idea...
I'll see what I can make happen.
Thanks,
Katy

Julia,
I found reading your email about Finlay very interesting. I have
always thought that my daughter has the opposite - a very acute sense of
smell and wondered if it had anything to do with her very finicky eating
habits. Toddlers they say are picky, but mothers intuition tells me it is a
bit more. I suspect it goes to a probably acute sense of taste as well. She
smells everything before eating it for the first time! She can smell other
peoples foods from across the dinner table and will state "I don't like how
that smells." She has rejected fruits and vegetables and things that look
green, orange, yellow, etc., since she was very young. Never even having
tasted a pea, apple, grape, carrot, she seems to just shrink away from it.
Mothers intuition tells me something is up.
Back to Finlay. I was mentioning this sense of smell thing to someone
one day and they told me a story about their brother who got in a motorcycle
accident in college. Stating that a sense of taste definitely plays a big
role in eating and maintain body weight. Apparently through the accident and
injuries from it, the brother lost his sense of taste. From this he went on
to loose a very unhealthy amount of weight (the very first time in his life)
because he just wasn't interested in eating. He would totally forget to eat
and even when prompted just wasn't interested. I do not remember exactly
what they did, I believe they put him on an appetite stimulant and diet to
boost calories, but it was a struggle for a while. The end of the story...he
did end up gaining the weight back, but I do not recall if they could restore
or promote the sense of taste once again.
Anyway, yours is only the second story I have ever heard like this.
When you see your doctor again, would you mind asking about the sense of
smell thing and any relevance it may have to FTT? Thanks. And good luck!
Leslie
(Mommy to Jessie- 4 yrs, 21 pounds, 35 inches, Periactin, RSS)

Hi Jodi,
Good luck with Max and his surgery, he'll probably love the plasters
for about 2 days!!
Just to give you the latest update on the testerone analogue to
induce puberty for Andrew. The drug is oxandrolone, and has been
around for years. It is an anabolic steroid and was initially used to
induce maturation. However, in more recent years it has been used in
higher doses to enhance performance in sports and body building, and
there is now a general reluctance by many Doctors to prescribe it.
Recent studies into this drug are suggesting that it may benefit
patients with HIV (wasting);
Some research is suggesting that with children, oxandrolone increases
the efficiency of GHT, and if used in combinations the amount of GH
needed may be reduced (I don't know if these studies relate to RSS
children at all, but our Dr did mention that girls with Turner
syndrome `appear' to benefited from this combined treatment. These
observations are just that, no conclusive evidence is avaible yet.)
The drug is prescribed in low doses and is continued for 18mths - 2
years, or until the child's bone age reaches 14, then it is stopped.
It will not improve the final height Andrew will reach, it just
enables him to get there earlier and develop muscle mass sooner than
nature had designed. His final height will not be disadvantaged by
inducing puberty, as his growth plates will not close until the end
of puberty. We are entering into an unknown area with this medication
and the RSS issues, however after going through all the pros and
cons , we have agreed to commence this course of treatment, and are
now awaiting Government approval which should take about 6 weeks, (it
is a banned substance here, being an anabolic steroid)
I think it is just amazing that what so many parents with RSS
children are trying to avoid (early puberty) is the issue that is
causing us so much grief with Andrew and the problems associated with
his much delayed maturation. These RSS kids, although similar are all
so very different.
If Clarissa's mum Chris is reading, this is there any other advice or
recommendations you may have with delayed puberty. I would appreciate
any imput on this before approval is granted and we start the
treatment
Regards
Adrianne

Wendy, The RSS Division of MAGIC has copies of numerous medical
journal articles on GH, and long-term effects (adult height, etc).
If you are a member, they will mail you a copy of any article at no
charge (they send you a list of all the articles first).
Also, if you are a member of the RSS Networking Database, each
participant gets a copy of all the data. You can then look up each
child, and there are teens and adults in there, see which ones took
GH and at what age, and then look at their annual height measurements.
Please contact me on either of the above options if you have no idea
what I am talking about.
Jennifer Salem (magicrss@...)

Katy -
How would you like to own a project for me? What if you contact the
publisher, explain about MAGIC, and see if we could purchase X number
of copies at a discounted price. I would love to give each child at
the RSS division a FREE copy of the book, if you recommend the book
for multiple ages.
I know I could get donations to cover such a give-away. Say 60 kids?
Jennifer
--- In RSS-Support@y..., "Badt-Frissora, Katherine S (Katy)"

about kids who stand "tall" and stick up for themselves? Well, I took
them all out of the library, and they really are adorable.
Especially sweet is:
poignant. I recommend the book highly and think that MAGIC should
give it out as raffle prizes at the convention!!

Inga - A g-tube is not an easy decision, and should never be made
lightly. So don't worry that you haven't done it, or that anyone is
judging you!!!
Are you familiar with Dale on the listserve? Her son Chris was
roughly 35 pounds at age 9-10 yrs old. No G-tube, they had really
contemplated year after year, but were just not comfortable. They
finally did get one a month or so after seeing Dr. H again at the
convention, and he ended up gaining, oh, man, I have already
forgotten - their story is in one of the MAGIC newsletters. I think
he gained 15-20 pounds in his first 6 months on the G-tube. She
wrote that she now wishes they had done it earlier (mainly, I think
she wrote, due to the difficulty of having a 10-year-old dealing with
the G-tube versus a 3-yr-old who might now know any better).
The bottom line is that we all do the best we can as parents. You
make decisions for your child with the info you have at hand.
Nothing more, nothing less. Every family is going to have different
comfort levels on what they are willing to try to help their child
gain weight, and grow in height. No one is right or wrong (well, I
say that but clearly there is always the possibility of a neglectful
parent like the situation I worked with recently where a grandma was
trying to get custody of her 10-year-old grandson who was 27 pounds
and had an unrepaired hypospadius and had only seen 2 emergency room
physicians in 5 years!).
So, Inga, do not worry!!! You are researching everything, you
clearly adore your son and you will make the right decision, in your
own time. No one passes judgement (and if they, I will kick the
*#$& out of them).
Lots of love, hugges and kisses via email! Jennifer

Not knowing or seeing your niece, etc., and not being a doctor....
But remember that many SGA children have normal sized heads - the
IUGR (whatever reasons that caused the IUGR) impacted their length
and weight. But the brain/genetics often dictate normal head size.
The question is whether the child catches up to a normal curve by age
2. A premie child would usually not catch up by just 6 months of
age. Especially one born at 31 weeks. So I wouldn't worry at this
time. If the baby is not eating well, you might encourage the parent
to have the child checked out by a peds GI to rule out reflux
(remember that reflux does not have to include vomiting to be
severe). Reflux into the esoph., etc. can be very painful and cause
an infant to not eat.
Hope this helps clarify things a bit. Jennifer

Inga, from reading your son's weight numbers, it is clear that either
there is a GI reason that he is not absorbing the calories, or that
his body simply can't eat all the calories he needs. Less than one
pound weight gain from 12-18 months and then from 18-24 months, WOW!!!
I have a bunch of questions for you - I hope this doesn't overwhelm
you! How many calories a day is he eating today, at age 7? How
often is he eating? Does he have a 504 at school, and is he having
mandated snack times at least once in the morning and once in the
afternoon, between meals? Is someone at the school ensuring that he
finishes his lunch?
Ideally, he should be having a carbo breakfast (waffles, pancakes,
oatmeal, bagel with lots of butter and cream cheese), let's say at
7:30am. Then let's say school starts at 8:20am. He should have a
carbo snack somewhere between 9:30-10:00am. Then lunch at 11:30-
12:00 (you can also do another snack in between there, too, as my
daughter has TWO snacks, one snack an hour). Then after lunch, about
60-90 minutes, ANOTHER snack. Then home, for a second lunch,
literally.
My daughter literally eats every hour. It may not be much. Her
snacks at school (zip-lock baggies I put in her cubby every Monday)
include just 5 Pringles, or 4 rits-Bits with peanut butter, or 3
large crackers.
But remember everyone, for a child that is roughly 30 pounds or so,
11 extra calories a day over an entire year (one Saltine cracker)
adds up to ONE POUND OF EXTRA WEIGHT.
We have to all think SMALLL.... yogurt sticks are great, but a
cracker with peanut butter is even better. Now, this is all my own
personal experience, and that garnered from parents whose children
have gained weight. This may not work for everyone. So take what I
say with a grain of salt. This is what the listserve is about, right?
Jennifer

Inga, oh, I wish i could drive down and give you a big hug!!! Your
son and your family absolutely need the convention. I would like to
give you the name and phone number of a mom and son (and grandma) who
attended the convention last year. Her son is 9 yrs old and honestly,
even I, who sees TONS of RSS kids and should know better, thought he
was about 6. He LOVEDDD the convention.
Remember, too, that the convention includes 10 other medical
divisions, so there are kids who have lots of other growth disorders,
and in many cases, their height is of shorter stature than the
average RSS child.
I can't promise that someone won't say the wrong thing at the
convention, but for the most part, parents at the convention know
better than to assume ANY age!!!
Clearly, you have realized that Tim is too far underweight, even for
an RSS child. And the convention (with not only Dr. Harbison being
there, but Dr. Dumont, peds GI, and LOTSSS of other doctors for all
the different disorders), might represent the best shot of getting a
great multitude of answers.
One idea might be the following (and this could be all of us
attending). All the kids wear badges, and each division has a
different color (it helps us "find" each other). We could write our
child's AGE on their badge under their name, in big numbers.
Currently, I know of at least 7 RSS children attending this summer
that are ages 6-7 years old. So your son would have lots of kids his
age to play with.
Please contact me off-line if there is anything I can do to help ease
your concerns about the convention at all. And again, EVERYONE, if
anyone has any suggestions about how to improve the convention, tell
me now!!!
Inga, I can't wait to meet you. Hopefully at my house next month,
and then in Chicago. Lots of love, Jennifer

Cami - If you go to CT to see your mom, I would go into NYC and see
Dr. Harbison. Yale Children's had great doctors, but it was a
diagnosis issue, not a treatment issue there.
One other idea is that you could come to the MAGIC convention in
Chicago in July. You would be ensured of a 30-minute consultation
with Dr. Harbison FREE (longer than many regular dr's appts). Plus
all the RSS presentations, etc.
I could get you a scholarship that would cover your registration and
hotel room. You can bring snacks for your own breakfast, and lunch
would be cheap at the sandwich cart. So your primary cost would be
the airfare to Chicago. Then, you can raise money to pay for the
airfare, and we can help you do exactly that. We have brochures that
explain all about the convention and our scholarship program, and
include tear-off donation forms. You hand them out to ANYONE you
know (and even those you don't), and they can make a tax-deductible
donation in your name to MAGIC. We then reimburse you for any
expenses with the money donated in your name!!! I am telling you, I
had many families raise $200-$600 last year, just with family and
friends and church members mailing in $5-$25 donations!!!
If you are interested, please contact me privately at
magicrss@.... (This goes for anyone interested).
Jennifer Salem

I know this is the THIRD email in a row dealing with Tim's RSS severity!
But I just wanted you all to know that we have gotten lots of tests done
with various specialists and did a lot of research. Our delaying g-tube
was due to both concerns about surgery but very much coupled with our
general success at getting tons of calories into him, albeit with tons of
effort - which we felt especially counterproductive at his current age.
And our delaying GH had much to do with his very small weight/height, which
we felt less concerned about after finding an article on how they treat
very small weight to height for cystic fibrosis with GH to improve
bulking... Then Timmy asked for it soon after the FDA approved it for SGA.
But also, we did find an article with a case history that reminded us much
of our son. We tried contacting authors without success - if any of you
know any of these docs, we'd like to hear from you! It is entitled, Severe
Silver-Russell Syndrome, and it is by D Donnai from the Regional Genetic
Service, St Mary's Hospital, Manchester; E Thompson and M Baraitser from
the Clinical Studies Unit, The Hospitals for Sick Children, Great Ormond
Street, London; and J Allanson from The Genetics Centre, Southwest
Biomedical Research Institute, Scottsdale, Arizona, USA. It was from the
Journal of Medical Genetics 1989, Volume 26, pg. 447-451.
Inga

I'm wanting to express a concern I have and solicit your prayers, thoughts, and
perhaps eventually even discussions with your own children before this year's
MAGIC conference. You see, Tim has always been a VERY severe RSS, and until
this year we haven't felt comfortable doing the g-tube and growth hormone
interventions. Well, this year we have, and we finally think we will come.
But I have a very major concern. Tim has gotten very, VERY sad about how many
people call him 'baby' - and he notices the negative words sooo much because he
has many really difficult times this past year which overshadow the many
positive responses he has gotten. Well, I am concerned that even a group of
RSS children might be tempted to treat him this way - you see he is 24 pounds
at 7 YEARS old - about the height of a 3-4 year old and the weight of a 2 year
old... It would be so tragic for him to come to the conference and have
several even MISTAKE him for someone younger than his age, since he would be
looking to 'fit in' there, even though I have tried to prepare him gently that
he is small for RSS. I hope and pray he get some more growth under him before
the conference, but even so, it would take a major miracle to physically
alleviate this stress factor by then...

I sent this info to someone do to a personal inquiry and thought I'd send it to
the list. I want you to know that we were definitely not just letting Tim go
at all before the g-tube - we did an ng the first couple years, and squeezed
bottles to videos after that - invested a huge part of our lives on it, in
fact. I think he was just much tinier to start for gestational age than most
RSS - even though I gained over 30 pounds during my pregnancy and he got tons
of calories through an ng afterwards (he vomitted and puked previous meals for
the 150 kcal/kg/day 'catch up cals' he was getting before him definite RSS
diagnosis - we got around 120 kcal/kg with our bottle squeezing and special
oils later), etc.
I have a chart I wrote out until Tim was 2. I'll give a few stats:
Birth (39 weeks gestation - took early) - 40 cm (15.6"), 1490 g (3 lb 5 oz)
1 yr - 58.5 cm, 4.49 kg (9.88 lb)
17 months - 24 3/4 ", 10 lb 6 oz
2 years - 27", appr 11 lb w/clothes
He tested negative for GHD on the IGF and BP screening blood tests sometime
during these first few years...
Inga

Stephanie,
I think that you have raised some good points in your message;
however, I also think that you are forgetting something....People on
this listserve tend to post more often when they are feeling
sad/anxious/nervous/overwhelmed/etc. Yes, these are negative
feelings, but what they are looking for is information, support and
a justification of their feelings. It's normal to feel this way,
especially if a parent is dealing with a newly diagnosed child or a
new situation with RSS. I have to admit that when I am feeling down
or overwhelmed, it feels pretty darn good to hear that others have
felt that way and understand - and it also feels pretty darn good to
get emails like yours that are upbeat and have a positive outlook.
Please do not think that I am criticizing your message. I am NOT at
all!!!! I just want to explain to you why I think you feel more of
a negative tone to the replies than a positive one. But when I read
your "hugs" and "kisses" and "kindness" and other great things about
you and Sapphire, it makes me smile and helps a whole lot. On the
other hand, sometimes, I just want someone to say that he/she feels
lousy, too, and can commiserate with me. Sometimes misery does love
company.
Another thing that tends to happen in a group is that people are not
as likely to post good news just because it is just that. We are
not a society that tends to "advertise" these things for fear of
boasting or bragging. While I don't ever think that it comes across
this way on the listserve (I LOVE to hear about the good, too), the
general human nature is to be less likely to turn to a support group
for that sort of thing. We don't feel we need the "support" when we
feel good. But as soon as things seem dark and dreary, we tend to
want company and not know that we are alone in a dark, lonely world.
So....what I guess I am saying is that I'm sorry you feel these
messages lately are causing others to feel anxious and nervous, but
that is what we are here for. We need to feel open enough to
express our feelings no matter what they are - as long as they are
not hurting anyone. I genuinely wish I could have some of your
positive outlook. PLEASE let it rub off on me!!! I'm going to need
it after Max has his surgery next week and is in pain and cannot get
around on his own for several weeks.
Give Sapphire one of those big hugs and a huge sloppy kiss, too.
She is lucky to have a mom who can see that silver lining most of
the time.
Jodi

Wendy,
Probably your best bet to find info regarding the success of GH is to
check out the literature available through the MAGIC library - there
are several mediacl articles that compare GH use with a control group
of people who did not use GH. There is a lot of new research coming
out of Europe showing that larger doses of GH for a shorter period of
time can be more successful than the traditional protocols.....
I'm not sure if Magic has those articles yet or not - but we sourced
them through our endocrinologist...I'm rushing out just now but if
youare interested I can give you some of the titles and references
when I get back!
Julia

Lisa,
When I read your post, it brought back so many memories for me. I felt very
much the same way when we first learned of Michael's RSS. I was getting
information in small doses here and there and really didn't see the whole
picture until I joined the one-list and started talking to others. It's very
hard at first not knowing where to turn. There's so much to learn about and you
may feel overwhelmed at times. Take it one day, one step at a time to learn
each new thing - i.e., g-tubes, gh, etc. If you try to take on everything at
once, it's too much. You'll eventually get a good handle on things and be what
I call on the "right" road. It seems to me that you don't really know what road
your on, and until you do, you will not feel comfortable.
My Michael has a lot of complicated problems - some asssociated with RSS and
some not. I learned of all his medical problems within about 6 months (from 18
months to 2 years). First we learned he had RSS, then severe congenital
scoliosis, then a single right kidney, undescended testes, and then, the big
one, profoundly deaf. I was ready to drop off a bridge in learning all this,
but slowly I learned that I cannot conquer the world with every problem all at
once. All I'm saying, is just try to brake down each issue with Owen one step
at a time. Assymetry is a big thing to tackle. See where you're going with
that. When you meet with your endo, bring up periactin, g-tube, etc. Take the
info from the list first and sort it out to then form your questions. Michael
does have a g-tube since 18 months and it's worked wonders for us. Not every
kid needs one, however. He did start periactin last year and we're holding off
on gh for now.
For whatever it's worth, hope this e-mail has been of some help.
Cheryl
Mom to Jennifer, Thomas, and Michael - all 4 years old

Hi
I'm really interested in finding out more about getting GH in the UK
and I have a couple of specific questions - if any of you UK parents
know the answer - or knwo where I can find the answer I'd be really
appreciative.....
Finlay doesn;t qualify for GH here in NZ where the criteria seem to
be the most restrictive - he has to be below the 0.4th percentile for
height to qualify - thats more than -3SDS
1.What are the qualifying criteria in the UK for applying for GH
under the short stature category - (ie for a child who is not GH
deficient or who does not have a medical condition that means they
need GH)
2.Can a Dr (eg DR Stanhope) over ride this criteria if he feels a
child would benefit from GH - (ie are there set guidlines but
decisions are made on a case by case basis - if it can be proven that
a child would relaly benefit from GH)
Karen (Tylers mum) and I are going to see our MP on Saturday morning
to discuss the whole funding issue here in NZ (we are going to change
the system ;-) since it doesn't work for our boys!!!) ANyway we are
pretty sure taht Tyler and Finlay would qualify for funding in other
countries as they are both below the 1st percentile for height - but
it would be really helpful if we could be more specific about what
the qualifying criteria are in other countries.....
Also if anyone has info on qualifying criteria in their country -
(Australia?, Sweden, Belgium, Netherlands.....etc) taht would also be
of interest to us.
Many thanks to anyone who can shed any light!!!
Julia
frustrated in New Zealand!

Hello,
I was just wondering if anyone has a list of adults with RSS that
underwent the GHT. I was wanting to know the final heights of them compared
to the adults whom did not take the GHT. I was told a few years ago that GHT
only got you to the final height faster if you was taking GH and your body
chemistry was not lacking in GH productions. Everything I could find a few
years ago pointed to the fact that my children would have been no taller with
or without GHT. Neither one of my 2 are lacking in normal GH production. The
doctors also stated that had I went ahead with the GHT that the best way to
get a few more inches would have been to use Lupron to stop puberty. My 13
year old son is now showing signs of puberty and I will not stop it. He does
not want to so I will not push him. We had to stop the GHT after 3 separate
tries when he had bad joint pain and also he has a bad skin disease that
caused problems with the injections. He has now grown in the last 2 year
almost 3 inches. He is almost 4 ft 3 and will be 14 in May. The doctors all
stated he would be 4 ft if he was lucky. I am having a blood test on myself
and my husband and all 3 of my children in Canada in an attempt to find the
link to where this disease came from. The doctors think that we have a good
chance in finding the link because we have 2 RSS children and one normal
younger child. I am lucky to have found good doctors in the past by way of
the Army. Anyway to cut this one short if you guys can help me out by sending
me any info on final adult height in GHT and non GHT it would be great.
And oh by the way even little people can do well in school, my daughter is a
High school cheerleader and one of the faster children in track and also my
son plays all sports and even is trying out for football. So whenever you can
encourage them it is worth every second of it:)
Wendy
Krystal 4 ft 7 and 3/4 16 years old RSS
David 4 ft 2 and 3/4 13 years old RSS
Kevin almost 5 ft and 11 years old NON RSS

Hi guys,
Storm's appointment went really well! We really like this Dr. a LOT! She is
doing all the tests that I remember Dr. H talking about wanting to do and is
planning to call Dr. H when she gets the results to discuss what she thinks
should be done!!!WOW!!!
Storm will be having an endoscopy and ph study next Tuesday, then the following
Monday will have a stomach emptying scan. After all of that they will decide if
Storm needs the fundo (Nissan) or not and she seems to be leaning towards going
ahead with a g-tube also if they need to do the fundo.
This all makes me quite nervous! I will email Dr. H later and let her know about
Dr. Hunt.(Another Dr. H) No one is that thorough.
I felt like she was interested in everything we had to say. For the next week or
so Storm is off all meds so they wont interfere with the tests. Thanks for
listening and for your support.
Carmen, Mom to Storm, 6yrs. 7 mos., 35 pounds, 42 inches (according to me, only
40.5 according to Dr. Hunts office) They didn't measure very well!

Lisa - Here comes one big hug, watch out here comes another, and another...
I truely understand how you feel, Sapphire is 33 months, 21.5lbs and 84 cms
and she is often very ill and I am at my wits end.
Remember that the listserve is made up of different personalities, some
people I find a little manic and some I find great comfort in, some feel
they know it all and some I think really do for whom I have great respect.
I come to this site for help and emotional support but often leave feeling
depressed by some people's worries - compared to mine and some others they
seem so trivial and easily solved
It is nice to hear good news but when things are going wrong for me at home
I feel people can be a little insensitive to those in a worse position.
We have been denied GHT, do not have periactin, nor feeding tubes or all
those treatments commonly associated with RSS kids. Sapphire's local
peadiatrician will not see her whilst I see Richard Stanhope in London for
which I have to pay out of my welfare money.
I often feel I have no-where to turn but this group which I feel is not
justifying it's main cause at the moment.
I appreciate this note may upset some list members but it is what I feel and
I feel justified in saying it.
I have a very happy child, we both have a positive and optimistic outlook
for the future, we focus on the postive things we have not on the negative
things, we give praise not criticism. I wish there were more people
everywhere with this attitude.
One thing that ALL replies missed out on was that it is the listserve that
is causing you to feel how you do 'nervous & anxious'. Did any of the list
serve members realise that is the impression the listserve is currently
giving out???
Lisa you sound like a great mom - and from that stats you're doing just
fine! Please don't be afraid to post. There are a number of good and kind
people on this site that would only be too happy to help with ANYTHING you
may be concerned about.
With love & kindness
From a Smiley Stephanie & a Scrumptious Sapphire KISS KISS KISS!

Hi everyone
We have jsut returned from a very interesting appt at the feeding
clinic. We consulted with a team of an SLT, psychologist, dietician
and paediatrician regarding finlays lack of oral intake......we
thrashed around lots of ideas and it was really very useful - but the
very interesting thing that came up was the theory that he may not
have a sense of smell or taste. This is based on the fact that there
are no foods that he particularly likes/does not like and he has
never rejected a food because of its taste. Similarly he has never
really shown an interest in smell and for example doesn't seem to
detect the smell of pediasure - even although it is very
strong...anyway they are going to do a smell test to see if the
theory holds and then we will take it from there.
Just thought I'd mention it as it seems like a fairly obvious theory
to investigate if you have a child whow shows no interest in food -
and behaves as though all food tastes like cardboard...funny how
these things always seem so obvious in hindsight!!!
Julia
Finlay 28 months 9.4kgs, 78cms g-tube

Hi Jackie, I don't know about running in families, I think there are
very few cases of siblings with RSS but I don't know about cousins...
but if your collective sisters-in-law are looking for support, as

Jennifer,
My mom lives in CT and we had thought about going east to stay with
her for a bit. Mostly to see if we could get into see Dr. H.. Who did
you see at Yale? We live in Alaska and it is like pulling teeth to
see some one up here. Being military does not help, the insurance is
not very helpful. There is a childrens hospital here, but the doctors
come up from Seattle on a rotating basis. But, if we could take
Joshua to New England I think my chances would be better.
I agree with the mom that was saying she did not like her Endo. If
you could just think of that Endo as a follow-up appt. and the time
with Dr. H as real care it may help to ease your mind a little.
We don't have a diagnosis at all. I am grasping at straws now and
shooting from the hip. I just want to get Josh some place that a real
doctor can take a look at him. He is 2 next week and 19.5 lbs. He had
a bug last week and didn't eat for 4 days. The doctor said "thats
normal with a virus, just keep and eye on him". Now he is eating and
his stomach is all distended (sp). I just look at him and cry. He
sits on his 4yr old brothers lap and is just swallowed up. I have
such huge children, except Josh-The-Bonsai-Baby.Levi 4, is 45 lbs;
Asa,6, is 58 lbs and Danielle 9 is 105 lbs. I just don't understand!!!
Sorry, I get typing about this and I just go to town.
Thanks for letting me vent,
Cami

Hello everyone
I was just wondering if RSS can run in families? I have read that
it's not suppose to but my my sister-in-law Shanna has a 5 month old
who was IUGR (just like Kyersten) and she has to be taken early
because her heart rate was going down (just like Kyersten)she was
born 2lb 7oz at 31 weeks and she looks exactly the same as my
daughter, a big head and little body. My niece is only 6 1/2 lbs at 5
months and dosen't eat much but she saw the same genetisis as
Kyersten and said she dosen't have RSS, but if she shows signs later
then she'll see her again. And now my other sister-in-law Angie (who
is due this week) supposeibly has a IUGR baby too, with a big head
and little body. Maybe i am just reading to much into this but it is
so strange and coincidental that we all had the same problems. I
guess only time will tell. oh.. Shanna and I are married to Angie's
brothers so it would run on there side of the family.
So anyway has anyone else known this to run in family's? Both kids
might end up not having RSS but they are just so much the same.
Jackie (kyersten 18 mon. 13lbs)

Hi Maeve
I'm a bit behind on emails recently and only just read this!
My understanding is that when a child first starts on GH they have an
initial growth spurt (height) - up to 10cms in the first year - and
then the height levels off slightly and they can start to put on a
bit of bulk interms of muscle mass/weight. So this could be what is
happening with Patrick he is having that initial height boost and the
weight gain will kick in in a few months.
Its terrific that his height is heading ot he 10th percentile though!
Julia

Yay! Tim was all upset about the shots as usual - but then he couldn't feel
the needle going in after some Ela Max applications (he did rub it off
accidentally while I was reading him his bedtime book during the first 20 min
wait, so we tried again...).
Inga