Re: 200+seizures... help for stella

[Guest guest]

Hi ,

Sorry to hear that things are not going well at the moment.

Why were her calories lowered - Had she put on too much weight? 24g

of MCT oil is not an awful lot but have you only recently introduced

this? The reason I ask is that MCT oil has fewer calories than LCT

so even though you have dropped by 50 cals, if you have only

introduced the MCT recently she might actually be having fewer

calories than you think, but if she has always had the 24g of MCT

then this wouldn't be the problem.

If she is not too ketotic, then could she be sickening for something?

Might it be withdrawal from epam? How long ago did she take the

last dose?

Sorry about all the questions but these are a few suggestions that

have come to my mind whilst reading your post - but I am sure other

people will be able to come up with more for you to look into.

Hope things get better.

Take Care

Emma - Mum to - Ketokid since July 2002, Med Free.

>

> HI guys, I need a little advice...

> Since Last weekend stella has had anywhere from 75-200 seizures,

complex

> partial, drops and T/C's. I have no idea what to do. Her BHB is

not overly

> high, so i'm guess she's not too ketotic, she is having 24g of MCT

oil a day

> now, but doubt that could be raising her keytones too

dramatically. She is

> not wanting to eat or drink, lays and stares into the air and just

twitches

> non stop. Her diazepam is gone now, but she did have 2 good days

with no

> seizures last week, and now it's just plain awful. Her cals got

reduced to

> 1225 from 1275 and her ratio is at 4-1, should I try lowering her

ratio a

> bit, or add cals, I just have no clue. She is still constipated,

so the MCT

> oil is not helping too much, although she did have her 1st BM of

the week

> this am. Any suggestions are greatly appreciated.

>

> --

> -mom to Stella, 5years old, started keto diet May 10th 2004

still

> waiting to be seizure free. Also on Lamictal, epam and

Diamox. Anisa

> is almost 10 and a happy healthy girl.

[Guest guest]

Hi

I can not give any advice regarding the diet as we are still waiting

to start it.I just wanted to say benzos and babirtutates are GABA

agonists which means they bind GABA reseptors and increase its level

in brain and spinal cord.Withdrawl of these drugs results in

dramatic decrease of GABA level and lowing of seizure threshold.I

hope as soon as he body get used to absence of benzos she will

improve.ph has been going through alot of withdrawl seizures

resently ( we are weaning pheno at the moment),he has been on pheno

for 10 months.I suppose if Stella has been on benzos over 2 years

its withdrawl could have dramatic effect on her.Hopefully she will

get better soon

Natasha mom to ph (23 months,suspected SMEI/Dravets syndrome)

[Guest guest]

I can't recall , how much was the last diazepam dose that you weaned

at the end of the withdrawal? It may be that she hasn't coped with the last

reduction and you may have to put it back and wait and let her stabilise

again before re-attempting the full withdrawal.

Constipation was a huge part of 's benzo withdrawals, so that may well

be tied in with it all as well.

With a cal change done around the same time as the wean though, it might be

kinda hard pinpointing which one has kickstarted all this seizure activity

off. Has she lost any weight since reducing the cals? If so, did she need

to?

MCT and btw, were not a good mix, never figured out why, but both

attempts at using it here saw him go into minor motor status (semi

responsive with extremity twitching in his case), at the same time his urine

ph went very alkaline, and he was v short on cals back then as well, so both

of these factors night have been tied into his adverse reaction to it,

rather than a problem with the oil itself.

Have you tried some one off benzo doses to try and break the seizure cycle?

If we were reducing say nitraz or clobazam (other benzos) and reacted

badly to the withdrawal, we would intervene with 24-48 hrs (no longer or

else addiction to the emergency med can set in as well) of regular diaz

(benzo cousin) to try settle things down again, which always worked with

him. But because he was cold turkied off his last benzo (oral diazepam) in

hospital, and placed in a coma, we didn't face that scenario at home here

when weaning it. If we had, I'm not sure what I would have used, as we don't

get ativan here in NZ, and none of the other benzo cousins are fast acting

enough to work in that manner. Except maybe clonazepam, but had a bad

reaction to this when he was trialled on it for a week as an AED a long time

ago, and we haven't touched the stuff since.

If this carries on too much longer (she may be getting into irritation mode

the longer it goes on for), maybe try 24-48 hrs of ativan (do you get it

there?) keping it up regularly regardless of whether it stops it straight

away - gives the brain longer to calm down so less chance of it all firing

back up again as each dose wears off) and if that doesn't work, you may have

to put some diaz back, unless you can pinpoint the calorie issue as being

more at fault for the seizure increase.

That's about all I can think of for now, hope it helps a bit,

----- Original Message -----

> HI guys, I need a little advice...

> Since Last weekend stella has had anywhere from 75-200 seizures, complex

> partial, drops and T/C's. I have no idea what to do. Her BHB is not

overly

> high, so i'm guess she's not too ketotic, she is having 24g of MCT oil a

day

> now, but doubt that could be raising her keytones too dramatically. She

is

> not wanting to eat or drink, lays and stares into the air and just

twitches

> non stop. Her diazepam is gone now, but she did have 2 good days with no

> seizures last week, and now it's just plain awful. Her cals got reduced

to

> 1225 from 1275 and her ratio is at 4-1, should I try lowering her ratio a

> bit, or add cals, I just have no clue. She is still constipated, so the

MCT

> oil is not helping too much, although she did have her 1st BM of the week

> this am. Any suggestions are greatly appreciated.

>

> --

> -mom to Stella, 5years old, started keto diet May 10th 2004 still

> waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa

> is almost 10 and a happy healthy girl.