I'm freaking out a bit...

[Guest guest]

Hi Everyone,

It could be that it's almost midnight, but I've got myself worked up

to tears again after reading some recent messages. I lurk here now

and then, but don't often post for various reasons.

My concern is this: I too have been debating over whether or not to

take to New York to see Dr. Harbison. I actually have an appt.

with her late June, but figured perhaps I should just wait until

after convention (we ARE going). It is not likely my insurance

(Kaiser) will cover it, but I am determined and will find a way to

pay whatever we have to. I am just so worried that should be

doing better but I still feel like I have no way to gauge it. He has

been getting the synagis shot for RSV and when they weighed him last

week he weighed 15 lbs 6 oz. He is 20 months (will be 21 months on

April 3rd). At his last pediatrician visit his head circumference

and height hadn't grown much and the doctor said he had sort

of " plateued " . He referred me to a food specialist who we'll see on

3/30. He sees a gastroenterologist off and on (appt 3/30), and I had

to ask this doctor for periactin (of course he had no idea if it

would help - but said " what the heck " ). I started on it

about a month ago, and it seems to help his appetite, but again...I'm

not certain it's enough.

I know some folks here have chosen (or their doctors have

recommended) g-tubes. After hearing how well the kids do with them

(and the mother who said drs. believed her child suffered

neuroglogically because of malnutrition pre-tube) I am so worried and

afraid I and his physicians can be doing more for him.

And so much for an endo...the one he saw told us she didn't even want

to see him again until he was 3. I know I should have pushed the

issue or pursued seeing a different one, but I thought maybe the

endos only help with ght and he was still too young...but now he's

almost 2.

I just feel so confused and helpless. This board is full of valuable

information, but when I visit and read it frightens me, so I avoid it

for a while. A lot of the recent discussions have been very relevant

to my current situation so I was compelled to write...and seek your

input/advice.

Thanks for all the suggestions for sleep/stress/etc. too...I have

been feeling very fatigued lately and thought something might be

wrong with me physically (I still wake up to feed 2x a night

though)...but I'm sure hormones,poor diet,lack of exercise, etc. are

contributing factors...it is so comforting to know I am not alone!!

I feel better already just getting this off my chest...I should go to

bed!

Thanks so much,

P.S. I'm also stressing over his severe hypospadias which Kaiser

won't operate on until he weighs 20 lbs...God knows how much longer

that will be and I worry about the emotional impact the surgery will

have on him!

Mom to 5 1/2 (non RSS) and 20 months (Prilosec,

Periactin, rotated small intestine, asymmetry, hypospadias)