Please help Logan / diastat

[Guest guest]

Logan has had very good control. It was rough weaning the topamax.

But after the last night we had 5 nights with seizures and used

diastat once. It worked. we went 4 days seizure and med free. He

really looked wonderful. We had 4 meals and a very late night

ketoformula snack. We changed to 5 meals, equal calories and the last

10pm meal being the ketoformula bottle. The next 2 days were ok.

Since then he has had seizures everyday. Sun, Mon and tues 2am-5am.

Wed and today the seizures are every 45 min, hour or two, around the

clock. I used the diastat yesterday. It only worked for 3 hours. I

gave diastat again today at 7am and he just had a seizure at 12:30.

It only worked for 5 hours. Please help. I don't know what else to

do. I think he has the potential because he has had really good

results on the diet. He has made so much progress. Yesterday morning

we went back to 4 meals and late night snack. His ketones are 80-160.

mostly 80. Can Diastat lose it effect or cause seizures after a few

uses? I am very grateful for you help. Thanks.

Laurie

Mom to Logan (unknown reason for seizures)

[Guest guest]

and Laurie,

I'm so sorry to hear all that you are going through with Logan! My

computer died a couple of days ago, so I have not been able to come

here to see how things are going for everyone. Fortunately, my dad

is a computer guru and was able to get us up and running again very

quickly.

Also, Stockton had a virus and then an ear infection and sinus

infection. He had two tonic seizures, two tonic-clonic seizures, one

large myoclonic jerk, and hundreds of atonic and atypical absence

seizures. We have adjusted the diet, given antibiotics, and added

Prevacid for acid refux (maybe an explanation for the crying

spells?). It just makes me physically sick to watch him go through

these more difficult times. Fortunately, the antibiotic put a near

stop to the seizures. They are building back up a bit, but we're

still down at about 40 small seizures per day.

Anyway, I have no advice for you - just support. I don't know what

to recommend because we are going through some of the same things you

are, only not nearly as serious. Stockton is having a difficult time

with teething. He cries and cries sometimes, is up half the night

sometimes, has unexplained fevers, more seizures for no reason, etc.

We have tried and tried to find other reasons for these issues, but

the only explanation we can come up with is the teeth. And

Stockton's teeth take FOREVER to come in. It's so frustrating,

especially when you are dealing with so much and something so simple

as teething throws a big wrench in it all. I hope you are able to

work through this all and find more success with the diet.

Hopefully, your new keto team will be able to help you out with some

new ideas or insights.

My heart is with you, as well as my thoughts and prayers. Take

care! I hope you find peace for Logan soon.

> Logan has had very good control. It was rough weaning the topamax.

> But after the last night we had 5 nights with seizures and used

> diastat once. It worked. we went 4 days seizure and med free. He

> really looked wonderful. We had 4 meals and a very late night

> ketoformula snack. We changed to 5 meals, equal calories and the

last

> 10pm meal being the ketoformula bottle. The next 2 days were ok.

> Since then he has had seizures everyday. Sun, Mon and tues 2am-5am.

> Wed and today the seizures are every 45 min, hour or two, around

the

> clock. I used the diastat yesterday. It only worked for 3 hours. I

> gave diastat again today at 7am and he just had a seizure at 12:30.

> It only worked for 5 hours. Please help. I don't know what else to

> do. I think he has the potential because he has had really good

> results on the diet. He has made so much progress. Yesterday

morning

> we went back to 4 meals and late night snack. His ketones are 80-

160.

> mostly 80. Can Diastat lose it effect or cause seizures after a few

> uses? I am very grateful for you help. Thanks.

> Laurie

> Mom to Logan (unknown reason for seizures)