Re: /?

[Guest guest]

Hi Michelee,

Thanks for your wonderful reply. I didn't realize you had gone

through the same thing with as far as medicine increases

making the seizures worse. I know we have put it behind us and gone

on, but I'm sure there are people out there who are in the same

position at this very moment. Hopefully they will find this group

and start questioning their doctors' diagnosis when it just doesn't

feel right. (Ethan's doctor actually said, " Multiple lesions and

moving targets " --like lesions can move? Oh yes, we

heard " underlying brain mechanisims causing both the seizures and

the other difficulties. No, we don't live in NY; but perhaps our

previous doctors trained at the same place.)

Gotta go.

Gretchen

> 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 .

>

> __________________________________________________

>