Re: Advice Please!/ 's eye

[Guest guest]

Hi Barb

Your message catched my attention!

ph used to do exactly the same thing.He would rub his right eye

every day,like something was really bothering him.His right eye

would become very red after seizure (sometimes).It had been lasting

for quite a few month but I have not been noticing anything for the

last months or two.I had two thoughts ,it could be side effect of

topamax whch is known to cause eye problems or it could be seizure

activity.But since your son is not on any meds,so it is not a side

effect of topamax.How have you figured it was not seizure activity?

Natasha mom to 23 months old ph(suspected SMEI/Dravet's

syndrome,going on keto diet soon)

[Guest guest]

Hi Natasha,

's consultant watched him for a while whilst he was doing this

and said that she can see no seizure activity and does not think that

it is. She has referred him to an eye specialist and will have

another EEG done on him as well, just to see what is going on.

I have also watched him when he has been doing this and can see no

pupil dilation or general twitching. When has activity going

on his chin will quiver at times albeit just briefly, but it lets me

know that something is lurking around.

I am going to try Barbs suggestion and get some cream for his eye and

see if this helps.

was on topomax, but has been off it for the past year -

hopefully it is not a lasting effect from that. I will carry on

slouthing when I can figure out what to slouth into!!!

Thanks and good luck when you get onto the keto diet.

Take care.

Emma.

Mum to - doing great and med free!

> Hi Barb

> Your message catched my attention!

> ph used to do exactly the same thing.He would rub his right eye

> every day,like something was really bothering him.His right eye

> would become very red after seizure (sometimes).It had been lasting

> for quite a few month but I have not been noticing anything for

the

> last months or two.I had two thoughts ,it could be side effect of

> topamax whch is known to cause eye problems or it could be seizure

> activity.But since your son is not on any meds,so it is not a side

> effect of topamax.How have you figured it was not seizure activity?

>

> Natasha mom to 23 months old ph(suspected SMEI/Dravet's

> syndrome,going on keto diet soon)

[Guest guest]

I was also going to say it could be eczema. Kristan has eczema and

she is always rubbing her right eye. We use elidel as it is steroid

free, very expensive, but worth it.

Satnam, mom to Kristan, 19 months

Keto kid since August 2003

> This could be a very long shot...but...just in case...

> My husband had a really similar sounding eye problem. It was red

and itching and watering for months. He did the whole allergy thing,

went to the eye doctor, nobody could help. He was put on all sorts

of prescription stuff and nothing worked - steriod drops, etc. In

fact they made him worse. One doctor finally suggested something

very simple like putting cortizone cream on his eyelid to see if it

did anything. Bought some over the counter....and it worked! Turns

out it was some sort of excema on his eyelid, you couldn't even see

it...but the cream cleared it up within days and it never came back.

Might be worth a try, can't see how it would hurt really. Not sure

about the seizure connection though.

> Barb Swoyer, Jake's mom

> Advice Please!

>

>

> This is the second time I have tried posting this message - must

> remember to copy what I type before trying to post!!!

>

> is rubbing one eye a hell of a lot and whenever he has a

> seizure this eye goes really red. This has been going on for a

few

> months now.

>

> I have been down the road of allergies (no, it wasn't the mad

rabbit

> we acquired in January), I have been down the hay fever road (no,

it

> didn't turn out to be that - tried tablets and the eye rubbing

> continued). He doesn't have anything in his eye (had to get him

in a

> head lock for that one!)

>

> Consultant has had a look and everything seems fine, it is not

mini

> seizure activity but she has referred him to eye specialist and

for

> an EEG just to make sure.

>

> I don't think it is anything diet related - but wondered if

anyone

> knows anything or could throw any light on this. My slouthing

has

> come to the end of the road at the moment!

>

> is med free and is on a mix of classical/mct diet - been

on

> the diet for 2 years now and we have reduced his ratio to 3.5:1 -

> suiting him far better and his seizures have reduced to an

average of

> 1 per week instead of the 3-4 per week we were having (12-15 per

DAY

> pre diet!) In himself he is great - I am just a little concerned

> about this eye.

>

> Any advice would be most welcome.

>

> Thanks

> Emma.

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a

last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

professional keto team!

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[Guest guest]

Here's one more idea. Is the redness the eye itself or around the eye such

as the eye lids? I'm guessing that you are saying that it is the eye

itself. We recently went through this with my 6 year old son. It looked

like he had a bad case of pink eye which was spreading to the other eye

(lasted 1-2 months). We tried several kinds of eye drops which only made it

worse. A friend suggested that it might be the sun. Why didn't the eye

specialist suggest this after 2 visits and paying high fees???? Hat and

sunglasses outside was the answer for him.

Rhonda

Consultant has had a look and everything seems fine, it is not

mini seizure activity but she has referred him to eye specialist and

for an EEG just to make sure. I don't think it is anything diet related -

but wondered if

anyone knows anything or could throw any light on this. My slouthing

has come to the end of the road at the moment! Any advice would be most

welcome.

[Guest guest]

Hi Emma

Have you tried a cream yet? Let me know if it helps. I have not seen

ph rubbing his eye for awhile but if it comes back maybe I

should try a cream too? Who knows

Natasha and Joe

[Guest guest]

Hi Satnam

ph also has exema although it is hardly noticable now.What I

mean when I said " red eye " was red inside(blood vessels),I though it

was what Emma meant too? Does Kristan's eye gets red inside as well?

Natasha & Joe (23 months,suspected SMEI/Dravet's syndrome,going on

keto diet soon)