New member-Jeanine Coakwell

[Guest guest]

Hi All,

Jeanine posted the message below under RE:Braeden crawled and I

didn't want it to get lost in the shuffle.

Thanks!

Saundra

Hi,

My name is Jeanine and I'm new to your support group. My son was

recently

diagnosed with RSS. He is 16 months old and stands about 28 " tall

and weighs

about 16 lbs. It is nice to know that I'm not the only one with a

tiny baby. I'm

only 19 now so the doctors presumed I was on drugs or something when

they

couldnt figure out what was wrong with him. He has not started any

treatment yet

but I am eager to know what has or has not worked for you.

[Guest guest]

Hi Jeanine,

It's nice to see another young mom here. I'm 24, so I understand what your

talking about...

My son is 17 months old, 27 " and 16lbs, so no, you are not the only one with

a tiny baby! Is he having any other problems?

Glad your here!

Jen, mom to Xavier

> Hi,

> My name is Jeanine and I'm new to your support group. My son was

> recently

> diagnosed with RSS. He is 16 months old and stands about 28 " tall

> and weighs

> about 16 lbs. It is nice to know that I'm not the only one with a

> tiny baby. I'm

> only 19 now so the doctors presumed I was on drugs or something when

> they

> couldnt figure out what was wrong with him. He has not started any

> treatment yet

> but I am eager to know what has or has not worked for you.

[Guest guest]

Jeanine,

I don't know if this will help, but I was 30 when Max was born. He

was put in the hospital at 2 months and the doctor covering for our

pediatrician put in orders to have only the nurses feed him. In

other words, he was accusing me of abusing my child and purposely

not feeding him! When the doctors don't know what is wrong, they

blame the mom. Max, however, even at 2 months, would have nothing

of it and refused to eat altogether. They had to put him on ng

feeds.

More of this stuff has happened over the years. I don't want to go

into it because I don't like to scare people. Let's just say that I

have learned to become a fighter and have developed a much thicker

skin. No matter how good the doctor is, the first line of thinking

is MOM when they don't know what is going on. Learn to talk back in

a nice way and stand up for what you truly believe in from your

heart. I know it's is difficult to do, but it works.

Jodi Z.

[Guest guest]

Jeanine,

I had doctors look at me like I'd been up to something that caused Willie's

failure to thrive , as well. And then the geneticist included that I took

TYLENOL in her report. And Willie visited the emergency room 3 times for head

injuries (he bangs it hard at least once a week still,at 3, it just doesn't fit

the

rest of him quite right). Anyhow, you know you're doing your best.

Unfortunately there are no awards and little recognition in the mothering world.

Hang in there and welcome to this group.

Kathy (mother to JAck ,5, non-RSS and Willie ,3, 22 lbs, 32 " , Periactin))