Re: New Member

[Guest guest]

I would like uou to welcome Deana into our little group. She is also

from Berlin and had surgery with Dr. Burchard at Dartmouth. Deana this

is a great group of people. Don't be shy just intirduce yourself. Well

I am out for the day to go yardsaling in the rain. Have a good day

everyone.

Welcome to the group Deana !!!!

I am also from New Hampshire, I have attended some of the group meetings at Dartmouth, but decided to have my surgery elsewhere.

I am scheduled for surgery on June 26 ,, in New Jersey. Would love to talk

Cheryl

[Guest guest]

Welcome to the group ! This is a wonderful support system. You've done great so far! Post often

-- New member

Hi there! I'm a brand new member to your list and look forward to all the support. My name is . I'm 34 years young. I've felt overweight my entire life but truly only been heavy the last 10 years or so, after I began having kids. I started WWOnline back in January and to date have lost 35 pounds. Man. It's such a tough battle for me. Why does it seem others seem to "melt" the pounds away when I seem to work so hard at it? But I'm really refining my thought processes about food and exercise and know I'm doing this the RIGHT way.

Look forward to meeting you all,

M. AIM: lbird68http://www.tbcnet.com/~jl2watson/86 pages in 2002 160 days until WDW!WWOnline member since 01/02 [218/183/150]

[Guest guest]

Cassandra's mom,

I cried when I read your post because this is our story too. Our daughter

Mackenzie was 9 in May when she contracted encephalitis and similar spent 40

days in ICU and 105 in hospital. (May 2003) We have not been through all the

meds yet because only been 8 months since our nightmare started. She is

presently on trileptal, zonegran, phenabarb, and just started keppra. We

also do klonopin as needed. We did the VNS while still in hospital in July

at urging of neuro. We also tried keto diet while in ICU on I.V. but

developed pancreatitis within 1 week and had to pull her off. That all said

we decided to try keto because our seizures were daily and we wanted a

miracle so we started keto in hospital October 26. There for 4 day stay.

Since we saw every neuro in the group(7) we had different feedback. One (a

younger epileptologist(sp?) really wanted us to , our main one we see (an

older neuro we love by the way)seemed a little more hesitant. Before I tell

you our results so far I say you should try it because that's the only way

you will ever know if it's your miracle. We have not had a change in her

seizures since we started -October prior to diet we had 80 and November

after diet had 80. We are very strict with diet and our daughter now 10 has

been great --she does get sad/upset sometimes especially through the

holidays but always sticks with it because she too does not want to have

seizures. We tried to lower meds in second month but went quickly downhill

and could not get control. Because many here do not have success with meds

on board still. Also because you have noticed certain foods being triggers I

would think this would mean positive things. We have not dealt with this

long enough to see that and hormones not an issue yet(not looking forward to

that)We are committed to the diet for at least 6 months and maybe 1 year

because I don't want to ever second guess if it could have worked if we had

just stuck with it. We have checked and double checked everything and really

have not seen any changes. Doing the diet is really not hard once you get it

in your routine and the food is not too bad at all -there is still plenty to

choose from. I would like to discuss more with you-my email is

k4him@... and my name is Melinda. We live in Texas but I grew up

south of you in Virginia and visit there lots. I hope I can help. I would

love to talk to you and find out more about Cassandra. Thank you, Melinda

new member

Hi,

I have been reading posts from this site for 2 weeks ever since we decided

to ask our neuro about it. He briefly mentioned it with a " passing eye roll "

last year but never again. A brief history on my daughter. She just turned

10 in 2001 when she contracted encephalitis (via mosquito). She was in

status epilipiticus (sp!) for 40 minutes. She never had a seizure in her

life before. She spent 6 weeks in intensive care, 27 days on a ventilator

and 10 days in a coma. As a result she now has what our neuro calls

" secondary epilepsy " . We have tried 8 meds (depakote, trileptol, tegretol,

dilantin, keppra, topamax, lamictal and klonopin) nothing seems to help.Oh

we get the 2 week " honeymoon " but that is it. Hormone changes seem to bring

seizures on as well as certain foods (seafood, msg, nitrates) Sorry to

ramble......I am seeing the neuro for her 3 month check up and are

requesting that he initiate the diet. I have read all the books and have a

long list of questions. What I want t!

o know is does anyone else have an older child (mine is now 12 1/2) on the

diet and are there any problems and also if anyone is famaliar with

Childrens Hospital in Pittsburgh (we live there). We are at our wits end.

Our daughter is willing, she keeps telling us that she wants to drive

so...Our dr. told us we are low on med choices, that we are running out! She

currently takes keppra, lamictal, topamax and klonopin prn...can anyone help

or give insight?!

Thanks for letting me ramble. Cassandras mom

" 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!

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