Re: Seizures/Keto and SCD-

[Guest guest]

My cousin's daughter is the same age as your daughter and is also not really on

the spectrum -- she has severe epilepsy with some autistic characteristics. She

has also received the VNS, which has been so ineffective, they may not even

bother with the battery replacement. Her seizures are so bad now, she cannot

walk across a room without seizing and cannot sleep without injuring herself.

They live very far from appropriate medical care to boot (4 hours), so the

community hospital has not much to offer when she is in a crisis. The only

thing her state gives her is 5 hours/month of respite. She has 3 other kids, so

this is why she is too overwhelmed to try the keto diet & I'm sure SCD would

present similar challenges.

-

Patti wrote:

<<Yes, now I understand why my cousin has not been willing to take the

plunge with her daughter (Keto diet has been recommended for her intractible

seizures). She probably wouldn't do SCD either, but I could be wrong. I take it

SCD has controlled your child's seizures? Did the Keto also work?

->>

Well, first let me say that Katera does not have autism. She does have a brain

anomaly that can be seen on MRI. Part of her Corpus Callosum (the bridge btwn

right and left hemispheres) is missing...did not develop in utero. No one knows

why. She is technically dx'ed with CP, Agenesis of the Corpus Callosum,

microcephaly, severe global delays, dyspraxia (both motor and verbal), &

epilepsy. She's not considered " on the spectrum " .... though she has some very

" autistic like " traits and severe sensory issues.

Seizure-wise, she has had them since birth (she's now 10 yrs old). No meds had

ever worked for her.... only made her worse. Plus she seems to be the " Queen of

Drug Reactions " . There are now three common AEDs that she has had severe (and

very scary) allergic reactions to, which has eliminated whole classes of seizure

drugs from even being options for her.

The Keto diet worked very well for Katera for about the first year. She had only

one seizure in that year. Then, we started having huge problems with her not

tolerating the high fat ratios.... and getting WAY too deeply into ketosis. For

some kids, they get to the point where they stay in ketosis almost TOO easily.

She got very sick and dehydrated and we had to keep lowering the ratio (more

carbs, less fat) and then we lost seizure control altogether. We struggled with

trying to make it work for more than a year after that.

Went straight from Keto to SCD and almost immediately got about five months

seizure free. Stayed on SCD a total of 18 months that time around..... but

seizures had returned with a vengeance in the last six months. Really puzzling

and disheartening.

Now, we think that the whole calcium oxalate crystal thing was the issue with

worsening seizures. Tamaro took me aside and pointed out that she felt

the probiotics in SCD yogurt were probably helping Katera to dissolve oxalate

crystals.... which meant calcium was being freed up to float around in her brain

wreaking havoc, because we didn't have her taking CLO (for A & D) and vitamin K

to be able to activate the bone proteins and put calcium down in her bones and

teeth. That's her theory anyway, and I think it makes sense.

We stayed on SCD while trialing more seizure drugs (and went through another

awful drug reaction).... finally ended up having a Vagus Nerve Stimulator

implanted surgically in June of '04... then took a break from SCD that fall. I

think Mommy was just completely burnt out, overwhelmed and discouraged because

the VNS was not helping yet either. Then, over a full year after the VNS was

placed, we put back a med we'd tried unsuccessfully in the past, and finally had

a winning combo.

This med (Keppra) + VNS has only made her seizures more manageable... not

eliminated them. They are simply shorter, milder and easier to stop now. I

consider it a rousing success that I haven't had to use emergency drugs but once

in this past year..... & have only called 9-1-1 once, about one year ago, but

ended up not even transporting.

We were used to horrificly severe, LONG, generalized seizures (from 20 minutes

to 2 hours long).... always having to use high doses of rectal valium to stop

them and frequent visits from emergency crews for IV Ativan and ambulance rides.

All the local paramedics got to know us very well.

I put Katera back on SCD in May of '06 to help support seizure control..... and

get control of some minor poo issues as we'd upset everything with antibiotics

post surgery. We still see a couple of seizures a month.... but they are

generally very mild (45 seconds to 2 minutes) and don't require anything but a

swipe of her VNS magnet. We're now using the K protocol to see if we can get a

handle on those calcium management issues.

So.... no, we are not seizure free here, I'm sad to say. I'm always hopeful,

though. She will be due for another surgery soon to replace her VNS battery

pack, so I'm determined to have the SCD yogurt flowing to offset yet another

round of IV antibiotics- unavoidable w/ surgery. I think it really depends on

the child... I know both Keto and SCD have worked wonders for other children

(and adults) with seizure disorders.

Patti