Re: We're doing the diet!! Barbara

[Guest guest]

Hi Barbara,

Jake's neuro is Dr. Riviello but Bergin will be his

Keto doc I believe. I could be wrong about that one.

She has personally followed since he was in the

coma a year and a half ago. If you dont mind me

asking, how often was your Jake having seizures prior

to the diet? I think we've talked before briefly

because I remember talking to another parent who had a

Jake that lives close to Boston. Maybe our families

could get together sometime. It's not like we have

nothing in common!!

Hope to hear from you soon!!

--- Barbara Swoyer bswoyer@...> wrote:

> Hi ,

> I have a Jake too and he has been on the diet since

> 1996. He just turned 9.

> We are followed by Duffy at CH and for the

> diet by Thiele at

> MGH (used to be the keto neuro at CH). Just wanted

> to wish you luck.

> In our case the diet was well worth it, I would say

> 85% improvement right

> off the bat that lasted about 2 years.

> Unfortunately we've slowly lost

> control since then but have remained on the diet as

> it's the only treatment

> that has helped him.

> Is Bergin your primary neuro?

> Barb Swoyer, Jake's mom, Boston (Sudbury)

>

> We're doing the diet!!

>

>

>

> > should be going for the admitt sometime next week

> and then they're

> > putting him in for the 1st available bed in Boston

> Children's Hospital.

>

>

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