Another question

[Guest guest]

In your replies some of you said that your children were diagnosed

despite not having assymetry or curved in pinkies. So, of course I am

curious what were the other physical characteristics that led to a

diagnosis of rss? I am asking because I am not sure what to look for as

far as nathaniel is concerned. Like I said he does have the curved in

pinkies, delayed bone age etc. but no assymetry, and I am not sure what

else to look for. Please any advice is helpful. As a mother it is so

hard not to know what is causing your child problems. I am being

patient but, it's hard. Thankyou for your time and support.I am not

sure I will be able to make a trip to the best ( Dr. Harbisson )

Anybody know who is the best in Chicago? That is where I live. I have

an endo but she does not specialize in RSS. Also Happy Holidays to all,

and happy birthday to those celebrating birthdays!!! Anita mom to

iel 7(condition still undiagnosed)34lbs.

[Guest guest]

Hi Anita,

The doc I saw noticed the whites of my daughters eyes have a blue tint

to them. That is something else to look for.. also a large forehead.My

docs were worried my daughter had hydrophysiliphus (SP), where fluid

collects in the skull. One side of her forehead is larger than the

other... but we had an ultrasound on her head that no extra fluid was

found. But that apperiance is another sign. Also small for gestional age

is another sign. While you were pregnant, were the doctors concerned

with the size of your son? My daughter has been diagnosed, but only from

her physical looks. I will have blood work done and other tests done in

about 3 months. I hope some of this imformation helps.

Best of luck,

.. mother to 6 months old RSS

atwine22 wrote:

>In your replies some of you said that your children were diagnosed

>despite not having assymetry or curved in pinkies. So, of course I am

>curious what were the other physical characteristics that led to a

>diagnosis of rss? I am asking because I am not sure what to look for as

>far as nathaniel is concerned. Like I said he does have the curved in

>pinkies, delayed bone age etc. but no assymetry, and I am not sure what

>else to look for. Please any advice is helpful. As a mother it is so

>hard not to know what is causing your child problems. I am being

>patient but, it's hard. Thankyou for your time and support.I am not

>sure I will be able to make a trip to the best ( Dr. Harbisson )

>Anybody know who is the best in Chicago? That is where I live. I have

>an endo but she does not specialize in RSS. Also Happy Holidays to all,

>and happy birthday to those celebrating birthdays!!! Anita mom to

>iel 7(condition still undiagnosed)34lbs.

>

>

>

>

>

>

>

>

[Guest guest]

If you join MAGIC and sign up early enough for the convention in

July, which is in Chicago, you can see her for free

>

> In your replies some of you said that your children were diagnosed

> despite not having assymetry or curved in pinkies. So, of course I

am

> curious what were the other physical characteristics that led to a

> diagnosis of rss? I am asking because I am not sure what to look

for as

> far as nathaniel is concerned. Like I said he does have the curved

in

> pinkies, delayed bone age etc. but no assymetry, and I am not sure

what

> else to look for. Please any advice is helpful. As a mother it is

so

> hard not to know what is causing your child problems. I am being

> patient but, it's hard. Thankyou for your time and support.I am

not

> sure I will be able to make a trip to the best ( Dr. Harbisson )

> Anybody know who is the best in Chicago? That is where I live. I

have

> an endo but she does not specialize in RSS. Also Happy Holidays to

all,

> and happy birthday to those celebrating birthdays!!! Anita mom to

> iel 7(condition still undiagnosed)34lbs.

>

[Guest guest]

Hi Anita,

I'm not sure what kindof responses you've had to previous emails so I

may be repeating some information. I've haven't been able to keep up

with everything lately.

Anyway have you been on the magic site? They have the most

information about RSS. Some other symptoms I believe are low birth

weight, large head compared to the rest of the body, larger forehead,

small chin, crowded teeth, small low set ears. Those are the ones

that come to mind. Of course not all kids have all symptoms ... my

son Noah does not have the curved pinkies or assymetry, yet he does

have alot of other symptoms. There is also a genetic chromosome 7

test, but less than 10% of the kids show this.

Did anyone tell you about the Magic convention in Chicago? Dr.

Harbison maybe going there and might be doing free apts that include

a diagnosis. That is next June or July.

Make sure to check out the Magic Foundation website for much more

information ... hope this is helpful ... also check out some pics of

the kids in the photo section and that might help out too.

Dawna

Mom to Matt 13, 11, Kaitlyn 8 and Noah 3 RSS

>

> In your replies some of you said that your children were diagnosed

> despite not having assymetry or curved in pinkies. So, of course I

am

> curious what were the other physical characteristics that led to a

> diagnosis of rss? I am asking because I am not sure what to look

for as

> far as nathaniel is concerned. Like I said he does have the curved

in

> pinkies, delayed bone age etc. but no assymetry, and I am not sure

what

> else to look for. Please any advice is helpful. As a mother it is

so

> hard not to know what is causing your child problems. I am being

> patient but, it's hard. Thankyou for your time and support.I am not

> sure I will be able to make a trip to the best ( Dr. Harbisson )

> Anybody know who is the best in Chicago? That is where I live. I

have

> an endo but she does not specialize in RSS. Also Happy Holidays to

all,

> and happy birthday to those celebrating birthdays!!! Anita mom to

> iel 7(condition still undiagnosed)34lbs.

>

[Guest guest]

Anita,

Call MAGIC at 1-800-3MAGIC3 and they can refer you to an endo in the

Chicago area. After all, they are in Chicago themselves! I do know

one of our members uses a Dr. Zimmerman and is very happy with him,

but I don't know where he is in Chicago. MAGIC can help locate him or

any other endos.

Jodi Z