Re: Looking for information for a friend

[Guest guest]

> Hi,

My daughter had encephalitis 3 years ago. When we inquired about the

diet here in Pittsburgh they told us we can try it, but if she has

any scar tissue (or lesions is I think what you meant) the diet will

not work since the focus of the seizures is most likely the area of

damage. Now my daughter has only had CAT Scans, MRI's and EEG " S. and

they have been negative but according to our dr. it can be such a

small area we would require more extensive testing and that won't get

done unless we are willing to talk to a surgeon. I am also scared to

death, but am now to the point where it is my responsibility as a

parent to give my child their best chance at a " normal life " I can

tell you that on the eeg the tech told us that there is an area of

slowing in the temp. lobe which is similiar to what a stroke would

look like, therefore concievably there could be some atrophied

tissue. With meningitis and a stroke he may very well have some area

of damage and therefore a focus. Believe me, it has taken 3 years to

get me to agree to even a consult with the neurosurgeon. However when

that time comes I am going to Cleveland Clinic. They perform 77-100

temporal lobectomies a year. If the focus is in the temporal lobe, it

is deemed a " safe " area to operate. Hope this has been a help.

Jonna Mom to Cassandra 12

[Guest guest]

> Hi,

My daughter had encephalitis 3 years ago. When we inquired about the

diet here in Pittsburgh they told us we can try it, but if she has

any scar tissue (or lesions is I think what you meant) the diet will

not work since the focus of the seizures is most likely the area of

damage. Now my daughter has only had CAT Scans, MRI's and EEG " S. and

they have been negative but according to our dr. it can be such a

small area we would require more extensive testing and that won't get

done unless we are willing to talk to a surgeon. I am also scared to

death, but am now to the point where it is my responsibility as a

parent to give my child their best chance at a " normal life " I can

tell you that on the eeg the tech told us that there is an area of

slowing in the temp. lobe which is similiar to what a stroke would

look like, therefore concievably there could be some atrophied

tissue. With meningitis and a stroke he may very well have some area

of damage and therefore a focus. Believe me, it has taken 3 years to

get me to agree to even a consult with the neurosurgeon. However when

that time comes I am going to Cleveland Clinic. They perform 77-100

temporal lobectomies a year. If the focus is in the temporal lobe, it

is deemed a " safe " area to operate. Hope this has been a help.

Jonna Mom to Cassandra 12

[Guest guest]

> Hi,

My daughter had encephalitis 3 years ago. When we inquired about the

diet here in Pittsburgh they told us we can try it, but if she has

any scar tissue (or lesions is I think what you meant) the diet will

not work since the focus of the seizures is most likely the area of

damage. Now my daughter has only had CAT Scans, MRI's and EEG " S. and

they have been negative but according to our dr. it can be such a

small area we would require more extensive testing and that won't get

done unless we are willing to talk to a surgeon. I am also scared to

death, but am now to the point where it is my responsibility as a

parent to give my child their best chance at a " normal life " I can

tell you that on the eeg the tech told us that there is an area of

slowing in the temp. lobe which is similiar to what a stroke would

look like, therefore concievably there could be some atrophied

tissue. With meningitis and a stroke he may very well have some area

of damage and therefore a focus. Believe me, it has taken 3 years to

get me to agree to even a consult with the neurosurgeon. However when

that time comes I am going to Cleveland Clinic. They perform 77-100

temporal lobectomies a year. If the focus is in the temporal lobe, it

is deemed a " safe " area to operate. Hope this has been a help.

Jonna Mom to Cassandra 12

[Guest guest]

Hey ---- I can't help much, as I'm not sure what they are referring to

as " legions " but I can tell you that she would be in good hands in St. Louis.

Although we didn't initiate in St. Louis, we did go their for a surgical

evaluation (before we went keto). Dr. Edwin Trevathan is excellent. He has

done research on the diet before. He does things a little different from

Hopkins, but they see around the same success percentages. His team is very

thorough, looking at each child as an individual. Hope she finds some answers.

Kathy

Hi,

I'm trying to gain some information to relay to a friend who's been inquiring

about the Keto Diet. I've told her my experiences with my daughter, Abbie, but

she had additional questions that I couldn't answer.

Her son, Chad, is 6 yrs. old who has had meningitis and a stroke. He has

massive brain damage. Chad has myoclonic seizures and is on several medications

(can't remember which ones). She has called s Hopkins in hopes of trying

the diet since they haven't seen any good results from the medications.

However, after speaking with Hopkins, they mentioned that if he has legions

(spelling??) on his brain then the diet wouldn't work for him. What exactly are

legions? And why would this diet not work for Chad? Hopkins has requested to

look at his records and Chad's mom is to be sending them hoping that they will

accept him there.

If I understood Chad's mom correctly, they are going to St. Louis for a second

opinion. His neuro here has mentioned the VNS but Chad's mom isn't too much up

on that. Hopkins has asked if they've thought about surgery but that scares

them to death. Can anyone provide any information, suggestions, or advice?

Thanks in advance,

, Abbie's mama (Keto kid since Oct. 03)

________________________________________________________________

The best thing to hit the Internet in years - Juno SpeedBand!

Surf the Web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!