Re: Ugh..another yucky Dr.s apt.

[Guest guest]

,

I couldn't find your original post, so I just thought I'd reply to this one. I

just

want to tell you that I know exactly how you feel. I don't think it's just your

neurologist, unfortunately. All of Daphne's neurologists have basically told

us that she will most likely be retarded (she's only 10 months old). A

neurologist at 's Hopkins put it less than elegantly, saying " she won't be

top of her class at Harvard. "

Even other doctors write us off because of her seizures. At five months old

she just stopped eating and vomitted everything she did eat. Her GI doctors

said it was because of her neurological issues and seizures. After we

insisted on testing, though, eosiniphils were discovered in her stomach lining,

which meant she had an allergy to her formula.

She still doesn't eat much by mouth (she now has a g-tube), but this is now a

trust factor as the therapists who've actually taken the time to watch her

drink

have noted that she has a " beautiful " suck swallow reflex.

The fact is the doctors only see our children for a few minutes a month (if

that).

We know our children better than they do, and they certainly can't tell us our

kids' future (they can't even tell me why Daphne's having seizures in the first

place!). They also tend to make things sound so bleak... I wonder how they

would feel if they had a child with developmental delay and a seizure

disorder. I'll bet they would have a totally different perspective, and maybe

stop making predictions that sound so awful!

> > I don't know if I'm more mad or upset. Just got

> > back

> > from our local neuro. (only rarely consult w/him to

> > keep him updated for emergency purposes) at any

> > rate,

> > I was filling him in on the recent progress

> > has

> > made both w/seizure control and w/development. Told

> > him that while his development hasn't taken off,

> > I've

> > been recently encouraged by some bigger advances in

> > overall development. He then asked me if he was

> > talking and I said no, that he really doesn't use

> > words on a functional basis and he then hit me w/a

> > bombshell. He told me that he wanted to prepare me

> > for 's future - that he would probably need

> > special ed. services thru school and that he

> > probably

> > wouldn't ever read or write. For the first time

> > when

> > talking w/Dr.s I was speechless. I asked him why he

> > was prematurely predicting his future and he just

> > said

> > that it was his experience w/kids who don't talk by

> > 2.5, have had a turbulent seizure history, and who

> > don't show bigger strides in development after being

> > taken off meds - " typically " don't progress to the

> > stage where they can read/write. That whatever the

> > " underlying " cause of seizure activity is, it is

> > probably a wiring problem which is causing the

> > delays.

> >

> >

> > With that said, I will obviously never step foot in

> > that man's office again (we've had words twice

> > before

> > about premature diagnosis')and though I take what he

> > says w/a grain of salt - there is still a part of me

> > that wonders if what he says is true and that

> > perhaps

> > I should prepare myself for that potential. I just

> > feel like I was hit in the gut - after being

> > cautiously optimistic about his recent progression.

> > Plus, we've only been 3.5-4 wks. without myoclonic

> > jerks.

> >

> > OK - that's enough venting - thanks to all of you

> > for

> > listening. I just don't understand how some Dr.s

> > are

> > still in practice w/the unprofessionalism and

> > pessimistic attitudes.

> >

> > (mom to - 2.5yrs. old - ketokid

> > since

> > 6/03 - med free since 3/27/04 - working on the

> > seizure

> > free part but getting closer and closer.)

> >

> >

> >

> > __________________________________

> > Do you Yahoo!?

> > Yahoo! Mail - Helps protect you from nasty viruses.

> > http://promotions.yahoo.com/new_mail

> >

> >

> > " The Ketogenic Diet....a realistic treatment

> > option, NOT just a last resort! "

> >

> > List is for parent to parent

> > support only.

> > It is important to get medical

> > advice from a professional keto team!

> > Subscribe:

> > ketogenic-subscribe

> > Unsubscribe:

> > ketogenic-unsubscribe

> >

> >

> >

> >

> >