to Helen

[Guest guest]

the mail that mentioned....

Convention report (long)

We missed last year's convention, so it was good to see some old friends, and

meet

new people from near (California) and far (Italy!). The weather in Chicago was

mercifully not too hot and muggy this year. We arrived on Wednesday night, so

we

had time to enjoy the pools at the Marriott before swarms of kids invaded them.

But

wasn't able to swim all week because he had ear surgery last month.

We met with Dr. H. on Thursday morning. The good news is that has grown

a

couple more cm in the last couple months, and is now 119 cm (at age 8.5). After

a

year on gH, he's just below the 3rd percentile on the growth charts. It's nice

to see

him close to one of the " standard " lines instead of making his own line way down

below all the others! Dr. H. also approved our decision to wean him off the

feeding

tube, as he now has a pretty good appetite and his weight is holding up (just

shy of

20 kg). The bad news is that she thinks he's definitely in adrenarche

(pre-puberty),

and he may be developing insulin resistance. Also, she thinks he has scoliosis

(curvature of the spine). Bummer! One more thing for the little guy to

deal with,

on top of his RSS feeding & growth issues and hearing difficulties. And another

specialist to go see; we've already made an appointment with a pediatric

orthopedist.

The talks on Friday were informative. Although much of what Dr. H. said I

already

heard before at previous conventions, she seemed to place more emphasis this

year

on insulin resistance and scoliosis. Something new I learned was how insulin

can

affect the onset of early puberty. One way to prevent this is to limit the

intake of

refined carbohydrates, and keep your child's weight vs height within the 10-25

percentile range. Insulin resistance can also be treated with a diabetes drug

called

metformin.

It was interesting to hear Dr. Stanhope talk about his treatment regimen in

England.

He figures his gH dosages based on the child's size (surface area actually)

rather than

their weight, which results in higher doses, since RSS kids are skinny. He has

also

studied giving young children very high gH doses for only a few years, instead

of all

the way through puberty. Although this is still experimental, based on

anectodal

evidence from only 4 patients, he's had good results so far: after the initial

growth

spurt from the short-term gH treatment, the patients stayed on a higher growth

curve. Dr. H. seemed skeptical, though.

I thought the genetics talk was a bit too technical, especially right after

lunch. I was

able to follow it somewhat, but I'm a scientist. Looking around the room, I saw

a few

people dosing - including my wife! The main thing I got out of it was that they

still

don't have an understanding of the genetic causes for RSS, except for an

abnormality

of chromosome 7 called UPD7 that appears in <10% of RSS patients (usually mild

cases).

On Saturday morning, I attended the nutrition talk, while Kathie went to the

session

on school issues. I thought the former was good, especially the part taught by

the

feeding therapist. She gave some good examples with audience participation.

For

example, to emphasize how important good posture is for feeding infants and

toddlers, she had us all sit in our chairs with our legs raised up off the

floor, then

asked if we felt like eating in that position (no!). Kathie said her session

was good

too, although not too much new information for her, since she's been involved in

special ed and IEPs as a teacher and a parent.

After that, we picked up from day care and were planning to go back to

our

room and rest before the pool party, but grabbed us out in the hallway

and

convinced us to go into the RSS Adults session. Thank you, !!! That

was the

best session of the whole weekend! It was so encouraging to see these people,

most

of them very short (they grew up before gH treatment was widely available), but

otherwise very normal, intelligent, mature, self-confident and successful in

life. They

talked about many of the challenges and issues they faced growing up (teasing,

dating...), and still face as short adults (workplace challenges, getting

insured,

marriage and pregnancy...). Dr. H. made the point that these people are the RSS

success stories, because their parents set high expectations for them, and never

allowed them to use their RSS as a " crutch " , or an excuse not to perform up to

their

full potential in whatever they were doing.

Sorry this posting is so long, but I hope it gives those of you who weren't

there a

flavor of what you missed. Hope you can join us next year!

- Joe

[Guest guest]

Helen, thanks for your input. I really appreciate it.

Mojo

Re: ?'s and Mojo

Here are the questions: 1. How where you tested for lupus and how long between your first symptoms to diagnosis? The first sign I had was in 1997 and the Doctor I worked for(an OB/GYN) looked at a rash I had on my back that wouldn't go away, and told me that it looked like a lupus rash and tested my ANA. It was 1/121 ? I can't remember but I had a bx that came back inconclusive. So, I blew it off until I had another rash or two. Then after a few years or so I started having alot of other sx's. More test, then in May of 2002 I went to Vanderbilt in Nashville, and had another bx that was positive. I was already seeing a Rhumy so he just continued my Plaqunil. 2. What medication are you taking strictly for lupus. I know most of these are not actually "for" lupus, but I need the names of the ones that are given to treat lupus, not the secondary illnesses associated with lupus. Also, please mention what symptoms this medication is for and whether it is helping you or not. The only Lupus medication is Plaqunil 200mg three times a day. So far the only side effect has been increased acne. Not sure if it's from plaqunil or the DHEA that I use for fatigue.3. Skin lupus: please give me your input on medication used. I use a steriod cream called Clobetasol Propionate 0.05% It helps alot with the rashes.4. What alternative medicine are you using, for how long and with what result. Not using Mojo, I hope this helps some. I would like to see other responces as well. This could be helpful for all of us. Helen "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies