???, new to group

[Guest guest]

Hi!

I just found this group. I have a 3 1/2 daughter who experiences

upwards of 50 seizures per day. We had an EEG done a few mos. back

and the neuro called them " generalized spikes " (didn't use a

specific term - absence,etc) The seizures are very brief -- usually

only a second or so. Sometimes it is only a long blink that only my

husband or I notice. Sometimes they are a little longer and she

loses her balance and falls down. She looses muscle control and her

head will ususally drop. We had her on Keppra for 2 weeks but

didn't see a noticeable change.

The seizures started last Nov. She had started a protocol with a

DAN doctor (had been dx with mild autism) and we were about 6-8

weeks into the protocol when we started seeing these seizures. (of

course, made us wonder if something we started her on brought on the

seizures -- chelation??) But, we were assured by her dr. that wasn't

the case.

Anyway, we have started with a new DAN dr. and have seen an overall

improvement in all her areas (4-5 word phrases, better motor skills,

better cognition) EXCEPT in the area of seizures. They have

increased in number and intensity.

I am at my wits end. At this point, I would gladly accept any

delays in speech/motor for an end to these seizures. I would like

to go the " natural approach " and not drug her. We have no other

seizure issues anywhere in our extended families.

I am feeling rather down these days because I am due with baby #7

very soon. I know it will be even more difficult to research, etc.

once baby arrives.

I'm sorry this is so long. If anyone can provide some starting

points or other information, I would greatly appreciate it!!

Thank you, Patty

[Guest guest]

---

Dear Patty, My son started to have seizures about 3 1/2 years of age

also. We tried everything Keppra,Clonazepame,Depakote and others

with no success. We have just started a modified atkins diet with

no sugar or carbs. Lots of veggies and Oils(MCT'S)or medium chain

triglycerides. We have been on the diet for less than one week by

day 4 we witness a dramatic improvement cutting down the 100

seizures a day to more than a 60 percent reduction. We are looking

to do the Ketogenic diet when the hospital is able to take us.

There have been a lots of success stories. Check

http://www.doosesyndrome.com/ Under whats worked. I hope this is

helpful. Stay encouraged.

In , " pattymartin95 "

<pattymartin95@...> wrote:

>

> Hi!

> I just found this group. I have a 3 1/2 daughter who experiences

> upwards of 50 seizures per day. We had an EEG done a few mos.

back

> and the neuro called them " generalized spikes " (didn't use a

> specific term - absence,etc) The seizures are very brief --

usually

> only a second or so. Sometimes it is only a long blink that only

my

> husband or I notice. Sometimes they are a little longer and she

> loses her balance and falls down. She looses muscle control and

her

> head will ususally drop. We had her on Keppra for 2 weeks but

> didn't see a noticeable change.

>

> The seizures started last Nov. She had started a protocol with a

> DAN doctor (had been dx with mild autism) and we were about 6-8

> weeks into the protocol when we started seeing these seizures.

(of

> course, made us wonder if something we started her on brought on

the

> seizures -- chelation??) But, we were assured by her dr. that

wasn't

> the case.

>

> Anyway, we have started with a new DAN dr. and have seen an

overall

> improvement in all her areas (4-5 word phrases, better motor

skills,

> better cognition) EXCEPT in the area of seizures. They have

> increased in number and intensity.

>

> I am at my wits end. At this point, I would gladly accept any

> delays in speech/motor for an end to these seizures. I would like

> to go the " natural approach " and not drug her. We have no other

> seizure issues anywhere in our extended families.

>

> I am feeling rather down these days because I am due with baby #7

> very soon. I know it will be even more difficult to research,

etc.

> once baby arrives.

>

> I'm sorry this is so long. If anyone can provide some starting

> points or other information, I would greatly appreciate it!!

>

> Thank you, Patty

>