Re: Detroit Children's Hospital for Heidi

[Guest guest]

Heidi,

Hope you don't mind me jumping in....we live in Grand Rapids so I

read your message with great interest. My son, was diagnosed

with IS (late onset) last Jan. We have not been doing well on the

diet (initiated thru U of Mich). We also went to Detroit Children's

to see June. We are still having problems and I left 2

messages to call me. So far, I have not been lucky enough to talk to

her! How is doing on the diet? We don't really know where to

go for any more help. We too saw Dr. Chugani. He prescribed

Vigabatrin which made the seizures worse. What seems to be working

for you?

Ann

> I guess I never met anyone on the team other that June, the former

dietician.

> We also used to see Dr. Chugani, but then switched to Bronson

Hospital in

> Kalamazoo which is closer as we live in Battle Creek.

> Yes, I got the letter today from June informing us of her

replacement and I

> talked to this morning on the phone. She seems well

informed so let's

> cross our fingers!

>

> , do you live in Michigan?

>

>

> Heidi, future occupational therapist and single mom to (IS,

> Severely/Multiply Impaired, Ketokid since 12/03) and twin brother,

(4 years), and

> big sis Madison (6).

>

>

>

[Guest guest]

Heidi,

Thank you so much for your reply! It sounds like is doing

extremely well! is still having 7 seizures per day so you are

doing much better than we are. We are weaning off Vigabatrin

because it just made the seizures worse. Although since the diet,

has also been much more alert and happy. I agree about the

weekend thing. I called 3 days ago and left a message about

Carnitor and then another message on Friday morning. I still haven't

heard, although I got many answers back on the web site!! Thank

goodness for all these great parents who know what its like...

We haven't been to Devos Hospital yet, but I hear it is great. What

a great career to get into. has had lots of OT at the schools

here in Greenville. I would love to meet you in person! I don't

know anyone personally who has had experience with this.

Ann

> Hi Ann,

>

> was on 5 or 6 meds when she started the diet in December and

having 2

> seizures per week. She's down to 2 meds (almost only one since I'm

weaning

> Keppra at the moment). She still has a seizure about every 10

days, but I

> figure that some of them are " withdrawal seizures " from the weaning

process. She

> is more alert, happy (giggling), and participates with her sister

and brother.

> She did have 3 seizures this week but after talking to (new

> dietician), we figured had gained too much weight too

quickly and she was going

> to change her ratio and give me a few new recipes. I raced back

home to send

> her the needed information on (this isn't in her file at

Detroit

> Children's?) yesterday morning and have yet to get a reply from

. I hate it

> when this stuff happens on the weekend and you are " alone " and

helpless.

> At least 's ketones were back to 160 this morning, but

probably because

> I only gave her half the portion of her applesauce yesterday.

> You live in Grand Rapids? I'm hoping do to my occupational therapy

field

> work (internship) at DeVos Children's Hospital next summer. Have

you ever been

> there for therapy services? How long has your child been on the

diet? It

> would be nice to meet someone in person that is doing the same

thing as we are.

> At least we have this support group on line - I don't know what I'd

do without

> it!! Feel free to email me directly if you'd like.

>

>

> Heidi, future occupational therapist and single mom to (IS,

> Severely/Multiply Impaired, Ketokid since 12/03) and twin brother,

(4 years), and

> big sis Madison (6).

>

>

>