Re: RSS jaw issues, eye problems, etc.

April 29, 2004

Hi Stacey,

Olivia has had glasses since she was 10 months old for severe

astigmatism but the cause is unknown, my husband has astigmatism but

it could also have been caused by her prematurity - laying down

and " re-shaping " the eye wrong when she was still supposed to be in

utero. As for near and far sightedness she seems to be ok so far.

I hope things go well with Logan and that he doesn't have to have

eye surgery!

As for the teeth, are you a member of MAGIC? If not I would

strongly advise becoming one as they have many articles on the

craniofacial characteristics of RSS kids, I just took them to

Olivia's dentist last week and he was quite responsive. (although

her mouth is small her bite is ok and the teeth are not crowded but

it will be a different story when the adult teeth come in).

Umm, we don't have boys so I'm not much help with the undecended

testicle but I was just looking at the blue RSS pamphlet and it is

listed as a characteristic so maybe MAGIC will have more info??

Just a thought any way.

Hope everything turns out great for you guys!

Leah, mom to 9 yrs, and Olivia 4.5 yrs, 18lbs, 33 " ,

(lactulose, senokot, zantac)

> Hello everyone -

> I am not a frequent writer on the group but I am in need of some

> advice/information, etc. My son, Logan, is 3 yr old. He has RSS,

> gastric reflux, allergy to milk and peanuts, mild developmentally

> delay and speech issues. Anyways, the lastest things we have

> learned is he is considered very farsighted - he was seen by an

> opthmalogist (for his eyes crossing) and he feels he will need at

> least glasses if not surgery. He saw the dentist on Monday and he

> says he has on overbite from using a pacifier - I tried explaining

> the RSS jaw features but I do not think he took me seriously.

> Lastly, we go to the urologist on Monday since my sons left

testicle

> has not come down in quite a while. He was seen for this a little

> over a year ago and we were told it wasn't a problem, well now I

> think it may be a problem. I am wondering if anyone else is

> experiencing any of these problems? My son is doing very well

> otherwise, growing well on the GH and is actually on the height

and

> weight charts at about 10%! I worry about the possible

implications

> of the above problems, it's bad enough our children are small,

have

> the normal sized head and some delays I cannot imagine adding eye

> problems, testicle problems and jaw problems. Is there anything

> that can be done for their jaw? Do RSS kids have more problems

with

> their eyes? I am sorry this is so long, I do not really have

anyone

> to talk to about this that can understand what we are going

through.

> Thank you,

> Stacey

> Logan,3, RSS and 12 non-RSS (stepson)

April 30, 2004

Stacey,

Tori 7/31/00 had the lazy eye surgery Dec 2001. It lasted about 45 min max for

the surgery she recovered well and the uncrossing of the eyes you could see

right away. A little redness in the eyes and you had to add drops for a a few

days. If it isn't corrected it may lead to more serious eye problem.

Then in Sept of 2002 she wore bifocals up until Jan 2004. Before glasses she

was unable to walk. Within about two weeks she was walking on her own! I think

the glasses were the hardest thing for me to except even thou that is the most

common of problems with people in general. She did a super job of wearing them.

We know just visit the eye dr. about every 6 months to make sure everything is

still looking good.

She tells people that her glasses are either broken or that she has her contacts

in that Dr. Lall-Trail gave her. Both statements are false but I think it is

cute that she came up with that answer on her own.

The teeth issue there are articles from Magic, and you may have to wait for him

to be a bit older to do anything like the ortho work.

Testicle problem having I a girl I can't help you on that one.

Maloy

RSS jaw issues, eye problems, etc.

Hello everyone -

I am not a frequent writer on the group but I am in need of some

advice/information, etc. My son, Logan, is 3 yr old. He has RSS,

gastric reflux, allergy to milk and peanuts, mild developmentally

delay and speech issues. Anyways, the lastest things we have

learned is he is considered very farsighted - he was seen by an

opthmalogist (for his eyes crossing) and he feels he will need at

least glasses if not surgery. He saw the dentist on Monday and he

says he has on overbite from using a pacifier - I tried explaining

the RSS jaw features but I do not think he took me seriously.

Lastly, we go to the urologist on Monday since my sons left testicle

has not come down in quite a while. He was seen for this a little

over a year ago and we were told it wasn't a problem, well now I

think it may be a problem. I am wondering if anyone else is

experiencing any of these problems? My son is doing very well

otherwise, growing well on the GH and is actually on the height and

weight charts at about 10%! I worry about the possible implications

of the above problems, it's bad enough our children are small, have

the normal sized head and some delays I cannot imagine adding eye

problems, testicle problems and jaw problems. Is there anything

that can be done for their jaw? Do RSS kids have more problems with

their eyes? I am sorry this is so long, I do not really have anyone

to talk to about this that can understand what we are going through.

Thank you,

Stacey

Logan,3, RSS and 12 non-RSS (stepson)

April 30, 2004

My son has an undescended testicle. Actually, we don't know yet if it is

missing or undescended. The docs could not locate it on ultrasound so we go in

mid May for a scope. If it is there, they will bring it down. I guess not

bringing it down, the testicle could become cancerous later in life. It sounds

like you know it is there, it just hasn't dropped yet. From what I have been

told by our docs, if it hasn't shown in over a year they would want to bring it

down. I hope that helps. If you have any more questions, feel free to ask.

Mommy to Keigan 4-15-03 (RSS) and Tristian 9-26-01

April 30, 2004

Hi

My daughter is not RSS per the geneticists who have seen her although

she is IUGR with large head, reflux etc etc. She is also farsighted

and the reason we found it out so early (at 6months) is one of the

geneticist (she saw three) sent her for eye evluation only because

she is " undiagnosed " and wanted eyes checked since so many syndromes

have eye problems associated with it. She is not crossing her eyes

and doesnt need glasses for now unless they start crossing. The eye

doctor said babies can correct farsightedness very well so she sees

ok just has to work hard for it, and the good thing about

farsightedness is it decreases with age whereas with nearsightedness

(myopia) it is opposite. She is seen every 3 month by the

opthalmologist. She has microcornia also (smaller than normal cornea

size) and the last geneticist we saw said her eye features are a clue

to her condition (yet to be diagnosed) and they are not associated

with RSS. IT seems a baseline eye evaluation is a good idea with RSS

or any other babies with a syndrome or conditions.

Sabina

April 30, 2004

Dear Stacey,

My oldest son, now 24, had a 'partially undecended testicle'. He had

a minor surgery for it when he was 9. Apparently, that is a key

time. The doctor told me that if this problem is not addressed by

age 10, the testicle is way more likely to become cancerous as the

man's life progresses. The surgery was done on an outpatient basis

by a urologist. It was done as day-surgery at the hospital and we

were home by bedtime. We had it done Friday and he was back to

school Monday. I know things are never quite that simple for RSS

kids, but just wanted to let you know that this is not uncommon, nor

complicated.

Conny, 's great-aunt