Re: Swimming(Kim)

[Guest guest]

say you haveheard of this.. perhaps it was simply the sunreflecting off the water when it ripples too? Younever know but thought this info might be helpful

Kim, This statement from caught my attention as Chelsea has had seizures triggered by light. She tends to stare at lights, and for a while the past couple of years seemed very sensitive to light. The biggest triggers seemed to be flourescent lights (especially if she would stare at them), the sun flickering behind trees, and, at times, our large screen tv. She also seemed much more sensitive after having one seizure. She is also very sensitive to the sun and heat, and usually slams her eyes shut and gets limp in the sun. She does better with a wide brimmed hat and dark sunglasses.

Fortunatly, Chelsea has been doing quite well recently and actually tolerating the sun and heat better than she ever has. She is being weaned off phenobarb, and one of the side effects is sun sensitivity.

I hope you find out why they had the seizures, so they can enjoy some swimming this summer=)

e, Chelsea's mom(nonspecific mito)

[Guest guest]

Thanks for the info e! Unfortunately yes, the girls do have

photosensitivity and the sun can occasionally set off a seizure. Fortunately

though, they are dealing with the sun much better this year. It may very well

have been the sun reflecting off the water though. I think next time I try

the pool, I will make sure the sun is not directly hitting the water.

Our appt. with the neuro was rather disappointing. I left there feeling

totally defeated and down in the dumps. The man's eyes totally tell the story

for him and I could tell by looking at him, he is struggling in trying to

figure out what we can do to control the myoclonics. We are down to two more

meds to try, the first being Lamictil and the second Depakote. Our last

resort would be the ketogenic diet. I did talk him into trying to increase

the Klonipin as it helped for a while until the girls developed a tolerance.

They are currently on a relatively low dose so we can increase it quite a

bit. I pray this will help. As far as the reflex epilepsy brought

up, he said that Klonipin, Keppra and Depakote are good meds for that. The

girls are already on Keppra and Klonipin. If I recall, Depakote is not a good

med for mito patients. Someone please correct me if I am wrong.

So, we came out of our neuro appt. rather disappointed but, hopeful we can

find something to help. I am coming to the realization (slowly...) that there

just may not be anything available to help. It's just a hard pill to

swallow.

Thanks for all the great ideas on the swimming issue and and I will let you

all know if we see any improvements. Otherwise, it looks like swimming in the

bathtub will be the way to go. Honestly, I think the girls would be just fine

with that!

Kim - Mom to and Lindsey