Re: Bad/Hallie

[Guest guest]

Hallie - you just being there is help. It is great to have people to

talk to about all this and people who don't think you are going off

your rocker too!

I refused the steroids, I was frightened what the long term

damage would do - am glad I didn't go down that road I have to say.

had to have rectal valium last night again - he is bright and

smiley this morning - but this little boy just can't sleep without

seizing at the moment.

has given me some things to go on that I will start looking

into today and shouting at hospitals/gp's about - should be

interesting.

Glad Tanner is doing well - love to you both and thanks for the

prayers - they are much appreciated.

Emma.

> 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.

>

>

>

>

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