Child Neurology | Forum profile

Dear Lacy, Rather than beat around the bush I will be totally honest. AED's are aweful and considering that LGS children/adults do not respond well to AED's these drugs should really be a last resort. If you look at the kiddos on the forum who have LGS you see a pattern of seizures out of control even with the drugs. Of course there are instances, crisis ones, where drugs are needed and that is true for Grant whenever he is in...

Yes, it was certainly a hellish weekend. So glad you are getting the extra nursing.

I know a lot of you are from different countries (i mean not the USA) i was wondering what health care is like in other countries and across the US, like What is covered bvy inasurance?? How often can u see specialiists that treat your disabilities? and anything else you may find important

((((hugs)))) It's so hard to have new labels applied to our kids!! Don't really have any advice to offer, just an ear to listen and some more (((hugs))). I would lean towards the least invasive things first (diet?) if it were me.... Lisa O.

I just sat here for over an hour and posted what happened after my last post Friday and my internet explorer quit working (of course at the same time I was ordering my kids christmas presents, spending more than I should. It was a sign from above, lol) After I posted Friday- Ri had 5 Tonic seizures in a row, then at midnight she had 4 tonic clonics back to back. I had to give her the diastat, it did stop the seizure, but I took her to the ER...

Prayers! I would agree that getting him to the hospital sounds right. Sounds like some type of infection. Ginny

Quote: Originally Posted by lacyndarella I have said for over a year now that Jimmie has LGS. That wasn't exactly the diagnosis. The diagnosis at 20 months was Post IS transitioning to LGS. No longer. I just talked to the epi's nurse in depth. The VEEG revealed 3 seizure types (which is better than prior to zonegran because he had been having tonics, which are still completely controlled), including atonics, myoclonics, and atypical...

The UK is much the same as Canada except that private care is available. We use only national health here because that's where the research and universities are that we need for Nicholas. He'd be dead on private care here. You can't get a baclofen pump refilled on private for example. London is fantastic because of the research and excellence, but it's a postal code lottery. East London isn't so good and some outlying...

Hi Jules do you agree with the assessors opinion on your ability to drive? do you feel safe driving? what modifications do you need? i wonder where they get their figures from. there is great variation in ''CP", and not everyone with CP would be going through an adaptive instructor ie. if i didn't need any modifications, i would stay way away from them. if they are saying only 10% of the folks they assess are...

Well, Tyler has picked up some weird throat infection that caused his palate to swell. His peds thought his palate had abcessed and sent us immediately down to Children's to consult with an ENT. No abcess, but the infection is a nasty dangerous one, and he will be on huge doses of Clindimycin for the next 10 days. Have no idea what caused this or how Tyler picked it up, but sure am glad it is fixable.