seizures again - fine tuning

[Guest guest]

Hi

I hope everyone had a wonderful Christmas!

has been having some seizures again - I'm hoping for some advice on

the best way to fine tune.

Yesterday we were in 'Price Attack' - a hairdressers that also sells hair

products cheaply. had a complex partial seizure, after which she sat

down on the floor. After a couple of minutes she seemed to be improving

but complained of a bad headache. She then made really loud

growling/screaming noises and rolled backwards, curling her legs up to her

stomach at the same time. She also seemed to have a coughing fit between,

and after these two 'seizures''. Would I be correct in assuming that the

growling/curling up was a new seizure type?

The shop had bright halogen lighting and there were containers of sparkly

hair accessories. I'm wondering whether these were factors in her seizures

- although a few years ago her EEG did not show photosensitivity. Can

someone change to become photosensitive over time?

Today came home from the shop grumpy and went to sleep. During

sleep she had 3 complex partial seizures - each one woke her up. After the

third I kept her awake and they stopped.

I am trying to figure out why these seizures are happening and what I

should do and would appreciate any input.

Over the last 4 weeks I have commenced a slow wean of Lamictal - 12.5mg per

week (she was on 400mg per day). The last reduction was 5 days ago. Could

these seizures be a reaction to withdrawing the med? I have reduced by

such a small amount I wouldn't have thought so. Pre-diet I weaned topamax

and observed improvements with each reduction.

She seems to require very high ketones to maintain seizure control

(16) The last few days her level has been 8-16. She has been drinking

less fluid, so the levels couldn't be due to watered down ketones. Could

the lower ketones be due to the med reduction?

I wonder whether I should reduce her calories. she is on the 10th

percentile for weight and about 50th percentile for weight. She has

maintaining her weight at 50.8 kg on 1830 calories per day.

The book recommends that a child 11 and over (she is 15) requires 30-40

kcal/kg or less. This works out to be 1524-2032 calories / day. The book

suggests a reduction in calories can result in better seizure

control.Would it be advisable to try this - given that a reduction will

cause her to lose weight. If so, how much should I reduce by? The last few

days she hasn't been hungry and it has been a chore to get her to eat so I

wonder whether her body is giving me the message to reduce calories.

The other thing I could try is to increase the ratio. She is on 2.8:1 at

the moment. She has done well on this ratio for some time but wonder

whether I need to increase it with med reductions.

Any ideas would be greatly appreciated.

Many thanks,

Jill

[Guest guest]

Hi Jill.....

Don't know whether you're seeing a new seizure type..... could be. I haven't every had that happen but it certainly is a possibility. I am wondering about not only the lights..... which have been a seizure trigger for Katera in the past.... but possibly chemical sensitivities to some of the products in the shop? Maybe a combination of several things overloading her?

The answer to whether or not you are seeing withdrawal seizures from the Lamictal is yes...... very likely.

I don't know for sure whether the lower ketones could be due to med reduction (anyone know?)..... but are you sure there was no chance of cheating, what with the holiday season and all?

Yes, if I were you, I would look at reducing calories a bit. Lots of kids need to be down around the 25th percentile for weight (it's funny, but when I read your first message, I read it wrong and thought it said 10th for height, 50th for weight, which is what you MEANT to write.... so I guess I was reading your mind) for the best seizure control.... Katera had to be on reduced calories at first to lose a bit of weight. Can you ask your dietician for advice on this? If not, I would suggest reducing by maybe 50 a day for a week, and then another 50 for a total of 100 calories less a day for a while and see what reaction you get. You don't want her to lose a lot all at once either...... upset the balance too much. Also, you might want to try more meals during the day, but each one smaller?? IE: four meals instead of three...... maybe she could tolerate the amount of food in a smaller meal, more often. I imagine all the fat content, combined with being in ketosis really whacks her appetite.... but you need to make sure she's eating the correct proportions for her ratio.... and at the same time, you don't want to be creating and eating disorder situation with having to force her to eat. Yes, maybe a higher ratio would be something to try...... BUT, careful not to change too many things at once. Pick one and give it a solid chance..... plus, expect to see effects from those med withdrawals for quite some time after.

Patti

seizures again - fine tuning

Yesterday we were in 'Price Attack' - a hairdressers that also sells hair products cheaply. had a complex partial seizure, after which she sat down on the floor. After a couple of minutes she seemed to be improving but complained of a bad headache. She then made really loud growling/screaming noises and rolled backwards, curling her legs up to her stomach at the same time. She also seemed to have a coughing fit between, and after these two 'seizures''. Would I be correct in assuming that the growling/curling up was a new seizure type?The shop had bright halogen lighting and there were containers of sparkly hair accessories. I'm wondering whether these were factors in her seizures - although a few years ago her EEG did not show photosensitivity. Can someone change to become photosensitive over time?I am trying to figure out why these seizures are happening and what I should do and would appreciate any input.Over the last 4 weeks I have commenced a slow wean of Lamictal - 12.5mg per week (she was on 400mg per day). The last reduction was 5 days ago. Could these seizures be a reaction to withdrawing the med? I have reduced by such a small amount I wouldn't have thought so. Pre-diet I weaned topamax and observed improvements with each reduction.She seems to require very high ketones to maintain seizure control (16) The last few days her level has been 8-16. She has been drinking less fluid, so the levels couldn't be due to watered down ketones. Could the lower ketones be due to the med reduction?I wonder whether I should reduce her calories. she is on the 10th percentile for weight and about 50th percentile for weight. She has maintaining her weight at 50.8 kg on 1830 calories per day.The book recommends that a child 11 and over (she is 15) requires 30-40 kcal/kg or less. This works out to be 1524-2032 calories / day. The book suggests a reduction in calories can result in better seizure control.Would it be advisable to try this - given that a reduction will cause her to lose weight. If so, how much should I reduce by? The last few days she hasn't been hungry and it has been a chore to get her to eat so I wonder whether her body is giving me the message to reduce calories.The other thing I could try is to increase the ratio. She is on 2.8:1 at the moment. She has done well on this ratio for some time but wonder whether I need to increase it with med reductions.Any ideas would be greatly appreciated.Many thanks,Jill

[Guest guest]

Jill,

We have been weaning Phenobarb since Aug. We too were going really slow to

try and avoid any problems, but the last three decreases have caused

seizures 10-12 days after the drop. We did have to raise her ratio each

time. She was at 2.3 and now is at 3.2. I don't know if it is a change in

metabolizism with less meds or just that she is not as hyper off the

Phenobarb, but she couldn't maintain her ketones as we dropped the meds.

Hope that helps!

Jeni, Mom to MaKenzie 2 and Bo 6

seizures again - fine tuning

> Hi

> I hope everyone had a wonderful Christmas!

>

> has been having some seizures again - I'm hoping for some advice on

> the best way to fine tune.

>

> Yesterday we were in 'Price Attack' - a hairdressers that also sells hair

> products cheaply. had a complex partial seizure, after which she

sat

> down on the floor. After a couple of minutes she seemed to be improving

> but complained of a bad headache. She then made really loud

> growling/screaming noises and rolled backwards, curling her legs up to her

> stomach at the same time. She also seemed to have a coughing fit between,

> and after these two 'seizures''. Would I be correct in assuming that the

> growling/curling up was a new seizure type?

> The shop had bright halogen lighting and there were containers of sparkly

> hair accessories. I'm wondering whether these were factors in her

seizures

> - although a few years ago her EEG did not show photosensitivity. Can

> someone change to become photosensitive over time?

>

> Today came home from the shop grumpy and went to sleep. During

> sleep she had 3 complex partial seizures - each one woke her up. After the

> third I kept her awake and they stopped.

>

> I am trying to figure out why these seizures are happening and what I

> should do and would appreciate any input.

>

> Over the last 4 weeks I have commenced a slow wean of Lamictal - 12.5mg

per

> week (she was on 400mg per day). The last reduction was 5 days ago.

Could

> these seizures be a reaction to withdrawing the med? I have reduced by

> such a small amount I wouldn't have thought so. Pre-diet I weaned

topamax

> and observed improvements with each reduction.

>

> She seems to require very high ketones to maintain seizure control

> (16) The last few days her level has been 8-16. She has been drinking

> less fluid, so the levels couldn't be due to watered down ketones. Could

> the lower ketones be due to the med reduction?

>

> I wonder whether I should reduce her calories. she is on the 10th

> percentile for weight and about 50th percentile for weight. She has

> maintaining her weight at 50.8 kg on 1830 calories per day.

> The book recommends that a child 11 and over (she is 15) requires 30-40

> kcal/kg or less. This works out to be 1524-2032 calories / day. The book

> suggests a reduction in calories can result in better seizure

> control.Would it be advisable to try this - given that a reduction will

> cause her to lose weight. If so, how much should I reduce by? The last

few

> days she hasn't been hungry and it has been a chore to get her to eat so I

> wonder whether her body is giving me the message to reduce calories.

>

> The other thing I could try is to increase the ratio. She is on 2.8:1 at

> the moment. She has done well on this ratio for some time but wonder

> whether I need to increase it with med reductions.

>

> Any ideas would be greatly appreciated.

> Many thanks,

> Jill

>

>

>

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