Re: searching for a new keto team/Gretchen

[Guest guest]

Gretchen,

Sounds like you have a much better menu program than we had. Our

menus were all over the board- supposedly 4:1 but when she ran them

they were everywhere from 2:1 to 5:1. Maybe that's why she was more

available for Langan- she knew we were totally helpless menu-wise

without her. And the ER trips maybe had something to do with it?

The acidosis had Langan pretty sick, so I think they had to keep a

close eye on her because of that.

I am glad you posted. I think the more info we have the better. I,

too, would be bothered about not seeing the doc during visits. I

guess they have a good reason for that but still. It wouldn't sit

well with me, and if I was looking for a keto team I would want to

know about that on the front end.

We'll definitely look you up the next time we're in Cincy. We are

going to have an MRI and MRS and maybe a sleep study done early next

year, so I'll let you know when we get dates. We're switching

insurance companies effective Jan 1st and have to wait until then to

actually schedule anything, but Dr. Holder wants to get us in soon

so I am hoping for January. I'll let you know.

I hope you get some answers soon about Ethan's shaking episodes. I

am not sure if I posted about this but Langan's simple partials

include a trembling/shaking. I hope that is not what is going on

with Ethan- he has been doing so well! But hopefully if it is they

can tweak things and get them under control.

Langan is, knock on wood, doing well. Her meds are still pretty

minimal, although we did increase them after that nasty airport

seizure. We have a schedule to increase every week but I stopped

after the first increase. We haven't seen a full seizure in over 3

weeks now and have only seen the occasional short partial, so we'll

take that and the lower med dose. Who knows what tomorrow will

bring- after that big seizure we are just taking a day at a time.

You know how that goes!!

I have not been around here as much lately, but I do think about you

and Ethan and the other kids here every day. We would love to meet

up with you guys in Cincy!

I hope you had a happy Thanksgiving!!!! Hugs to Ethan!

> > > > Hi ,

> > > > we are practically neighbors.... we live up in Erie county,

> > > PA..... We, too,

> > > > went to Children's Hospital of Pittsburgh..... and we too

> felt

> > > our " team " was

> > > > basically lacking, for want of better words....

> > > >

> > > > Although we tried to get into Hopkins, we have been

> unsuccessful

> > > in making

> > > > the switch. They told us that they don't take people who

> > started

> > > elsewhere....

> > > > bummer....

> > > >

> > > > I don't know for certain, but we've heard some good things

> about

> > > > Cleveland.... at least their epilepsy team, not specifically

> the

> > > ketogenic diet

> > > > aspect..... but you may want to look into this.... We, too,

> are

> > > thinking we may

> > > > investigate this option further..... Also, any info on the

> > > Columbus area?

> > > >

> > > > Just thinking... good luck, and keep us posted.

> > > > , Colton's mom.... on diet since June, 2004