Re: The trouble with no RSS diagnosis

[Guest guest]

Conny - please call MAGIC and request that a copy of the Small-for-

Gestational-Age pamphlet be mailed to you ASAP. This pamphlet I

finished about 3 months ago, and I think it is better than the RSS

one I wrote!!! It has information in there that you can give a

doctor when they question you about ketones; or about surgery; it

explains why the SGA underweight child needs to be given IV before

surgery or when they can't eat.

Remember that idiopathic small-for-gestational-age IS a diagnosis.

It may not be named after a doctor, but it is viewed as a diagnosis

within the medical community. I totally understand that it is

easier to have the name of RSS or 's or any other syndrome but

I promise you that we will continue to try and help provide you with

the literature and information that you can use to get your great-

nephew the treatment he needs and deserves, regardless of

his " diagnosis. "

Please let me know if you have any questions, whatsoever! You

shouldn't have doctors telling you he is just a tiny skinny kid. I

totally feel for you!!!

> While it is true that the day-to-day treatment of your child is no

> different whether they are diagnosed with RSS or not, there are

> problems that arise from the lack of a diagnosis.

>

> What do you do when your kid is sick and spilling Ketones and you

> can't use the 'blue letter' because he 'doesn't have RSS'. How do

> you even explain why you were testing for ketones in the first

> place?

>

> How do you get the doctor to treat your child differently in the

> event of a surgery? It is tough enough to get the doctors to pay

> attention and agree with what we know needs to be done when you

have

> a diagnosis and have all your ducks in a row.

>

> What happens when your kid is so tiny and skinny and diagnosed

with

> low-muscle tone and no one will discuss GH because he is 'just a

> little, skinny kid'?

>

> Sometimes, I think it must be just a little bit better to be

> diagnosed.

>

> Conny, Great-aunt to , undiagnosed skinny kid, 22.2 lbs and

> about 32 inches.

[Guest guest]

Dear Jenifer,

Thanks for your answer back. I will get that pamphlet.

Unfortunately, has not be officially diagnosed SGA either.

The only diagnosis they have ever assigned him was 'failure to

thrive', and I haven't even heard that one in quite some time. The

most annoying thing to me is that the doctors don't seem to know

enough about RSS to be certain of their diagnosis, positive or

negative. One geneticist told us that was born too big, at

5lbs 6oz, to be RSS. Yet, I know that there are other kids on this

list, properly diagnosed, who were around his size at birth. He said

that RSS children are born at like two or three pounds. That same

doctor told me that he is too big now to be RSS; again, not true. I

can certainly be convinced that is not RSS; he doesn't

possess many of the markers, however, I would like to believe that

the doctors who tell me that know what they are talking about!

I so wish I could bring him to Chicago to see, and be seen, by Dr.

Harbison. I know that she is so good at diagnosis that even if he

isn't RSS, she could perhaps steer us in the right direction.

Unfortunately, there is a divorce underway and I think that if I

proposed such a trip, it would just cause too many problems. To add

additional complications, none of us have money. If he were my

child, I would apply for a scholarship and move forward, but he is

not.

Anyway, with the pamphlet, at least I would be armed for the doctors

when he is sick. At Christmas, he got a virus that caused fever,

vomitting and diarrhea and he was a very sick kiddo so I was checking

his ketones and on Christmas night, he started dumping Ketones really

badly. The stick went to the darkest color. I had a fun time

explaining why I had been checking his ketones and they told me that

anyone might spill ketones if they were dehydrated.They did give him

an IV, and it helped some, but they did not know about the D10 IV

thing and they just kept looking at me like I was strange.

Again, thanks for all you do for all of us.

Conny, Great-aunt to , 26 months old, 22.2 lbs and about 32

inches.

> > While it is true that the day-to-day treatment of your child is

no

> > different whether they are diagnosed with RSS or not, there are

> > problems that arise from the lack of a diagnosis.

> >

> > What do you do when your kid is sick and spilling Ketones and you

> > can't use the 'blue letter' because he 'doesn't have RSS'. How

do

> > you even explain why you were testing for ketones in the first

> > place?

> >

> > How do you get the doctor to treat your child differently in the

> > event of a surgery? It is tough enough to get the doctors to pay

> > attention and agree with what we know needs to be done when you

> have

> > a diagnosis and have all your ducks in a row.

> >

> > What happens when your kid is so tiny and skinny and diagnosed

> with

> > low-muscle tone and no one will discuss GH because he is 'just a

> > little, skinny kid'?

> >

> > Sometimes, I think it must be just a little bit better to be

> > diagnosed.

> >

> > Conny, Great-aunt to , undiagnosed skinny kid, 22.2 lbs

and

> > about 32 inches.