Bad - Need Help Please.

[Guest guest]

Emma,

I am so sorry to hear that is having a bad time.

We have been on the ketogenic diet for a couple of weeks.. Tanner is still

doing well. I will definately say a prayer that the doctors and yourself can

figure what to do next to help him.

Before Tanner went in to the hospital he was having almost continuous seizures

at night. His nuerologist had my daughter give him 1/2 of a diazapam each

evening. That seemed to help break the pattern although that started not

helping either and a couple of times he had to take the rectal diazapam. The

Doctor said it was only a bandaid effect until they could try him on the

ketogenic diet. He had to wait a week to get in because the nutritionist was

too busy. The doctor also put him on dilantin temporarily until he could get in

and start the diet. He is off the diazapam now and weaning from the dilantin..

He also was getting the IVIG, gamma gobulin. He got that treatment twice. It

did seem to help but the diet is doing well enough on its own right now.

He is on a 4:1 ratio on the diet.

I just pray that your little can settle down and get better. I wish I

could be more help.

The next option for Tanner would have been steroids or surgery. Some do well on

the steroids, I have heard, but I am glad we haven't had to go that route.

I pray your little gets better.

Love,

Hallie

Bad - Need Help Please.

has had nearly 30 seizures this week and has been totally

wiped out. From doing so very well and his seizures being reduced

even more after the last diet change we have gone to this and I don't

know why. I have exhausted every avenue, spoken to our dietician and

consultant who has sent through a prescription for clobazam to give

him before he goes to bed - I have busted my backside with the diet

to get him off meds and after a year of being med free he has been

prescribed clobazam to use in emergencies instead of giving him

rectal valium - its breaking my heart.

He cannot go to sleep without having a seizure this week. Everytime

my boy tries to sleep he has a seizure and that makes him more tired,

its a vicious circle. I have given him rectal valium to try and

break it and it works for a few hours and then he has another

seizure. The valium then makes him wobbly on his feet and all he

wants to do is lay on the couch. When he is awake he is having some

absences but for the most part his is just laying on the couch. He

is eating and his ketones are fine - he is registering 8 on the urine

sticks. I can't do blood analysis because the bloody pharmacy

haven't got the monitoring sticks in yet - as they have only been

available on prescription since 1st July they are having problems

getting them - I am going nuts.

I've been checking his temperature and there doesn't appear to be any

illness looming and his temp is fine. He is not being sick or

appears to have a stomach upset. The food I have given him has been

all the usual.

He had had a seizure on Friday morning and it was very tight and he

was post-ictal for quite a while. He went to his dads at the weekend

and when he came back I was told that he had been quiet over the

weekend and he had had 3 seizures Saturday night but he had

brightened up Sunday afternoon. I put him to bed on Sunday and he

had 7 seizures that night, 8 seizures Tuesday night, 6 Wednesday

night, he has had 3 during the day to day and so far we are up to 5

tonight - those are the tonic clonic ones - the rest have been

absences.

His dietician doesn't think it is to do with his diet otherwise it

would have shown up before now and his ketones are fine. His blood

results from the doctors are fine but they were taken a few weeks ago.

He could be cutting teeth which is upsetting his system and the

weather is very humid and thundery here so that could be upsetting

him as well, but all this we have gone through before and he has

never been affected this badly. This is the worse he has been in the

two years he has been on the diet.

A few weeks ago we dropped the ratio from 4:1 to 3.5:1 with a slight

increase in MCT oil - he responded so well and we went nearly 2 1/2

weeks without ANY seizures, then we had 1 and then he went nearly a

week without any more (he has averaged 2-3 per week on the diet - he

was between 12-15 pre diet and on medication) - I was so pleased and

he was so bright and happy - it was great.

The consultant says that it could be just one of those things -

epilepsy is like that - it could be rough patch he is going through

but has prescribed clobazam for me to give him before he goes to bed

to try and stop him having a bad night - I really don't want to give

it to him.

I've not slept much this week and I am at the end of my tether - I

don't know where to look next or what to try next. I am so

frightened - please can anyone else suggest anything - what haven't I

looked into? I don't want to give him any medication until I know I

have exhausted every avenue. I don't want to panic and I may be over-

reacting (sleep deprivation doesn't help I know) - so I am sorry if

this sounds like whinging - I am just very scared for - I am

hoping that this is just a very bad blip and things will calm down

and it is another learning curve for me.

Thanks for reading.

Emma. A very worried mum to - on keto diet since July 2002

and WAS doing very well.