Gretchen/Ethan

[Guest guest]

Hi Gretchen-

When I read your most recent post stating how

" blessed " you feel to have found this a-m-a-z-i-n-g

group of people - I found myself nodding throughout

the whole message. I couldn't agree w/you more - this

group has probably saved my marriage and my sanity and

I'm not even kidding. I am a huge " worrier " and

probably one of the " weakest " minded of the group so I

truly " depend " on support from people who " care " and

who have lived thru similar experiences. It is so

heartwarming and " comfortable " not to have to " expect "

sympathy from this group of people - that's not what I

want (but is what I get from family/friends) - these

wonderful parents tell it like it is - some stories

incredibly sad - so sad that I truly include them in

my prayers at night - but most stories are so " awe "

inspiring that it gives me hope that someday we will

get control and that has a " chance " at becoming

a normal little guy. This is what I hope for - for

myself and all the other families that have to live

thru this terrifying/turbulent period. KUDOS to you

for getting " gushy " - I think at times, we all need to

feel appreciated and needed.

On a side note, after reading your " wrong " Dr. story -

are you sure you don't live in Corning, NY? Ha. I

just cannot believe the similarities that Ethan and

have been thru. You know, when

initiated the diet and had soooo much trouble one week

into it (plumeted down hill - lost

coordination/words/etc.)my neuro. told me it was a

" medication issue " that we needed to increase his

meds. When I told him it " appeared " to me that

was toxic on meds plus the diet - he said it was

" impossible " that Coop was on " too low of a dose " of

Lamictal to become toxic. Well.... 3 months later - 4

new seizure types - and delayed beyond belief - I

finally got a clue, and stopped increasing medication.

PLUS, when I mentioned to my neuro. that I was going

to stop increasing meds, and in fact, I was going to

start decreasing them because I was seeing more

seizure types, he told me that he couldn't advise that

- that the reason was developing more seizure

types was NOT due to the medication, that it was due

to the " underlying cause of the seizure disorder " and

it was running it's course. INFURIATING! Similar to

your Dr. telling you that Ethan's multiple seizure

types were due to a " brain lesion " . Makes my skin

crawl that these Dr.s get paid bookoo bucks to give

parents WRONG info. AND - that they are not even

willing to LISTEN to parents opinions/perspectives for

one minute as if we don't have a CLUE to what's going

on. Don't get me started..... Just forever glad that

you/Ethan happened across another neuro (so did we)

that has Ethan's best interest at heart instead of

dollars. A tiny miracle for sure.

Gretchen - don't EVER feel bad about believing in Dr.s

- it's natural/human to believe " experts " know what

they are talking about - I think what is " key " is

believing in ourselves and our children - that we have

gut feelings and know our kids better than anyone. We

have to believe - to dream - because NOONE can predict

the future - I was " reminded " of this when I got so

many inspiring stories of " WRONG " Dr. stories. I'm

reminded of this when I hear that Ethan is seizure

free and doing well - how incredible.

Give that big guy a hug for me! You are blessed and

truly an amazing mom!

- mom to .

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