Child Neurology Forum | 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...

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...

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.

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...

What really worried my mother though is that doctors are going to start giving him a specific type of meditation, which is used on many cancer patients. We are worried about the side effects that my brother may experience such as vomiting and hair loss. Does it usually take a long time for one to come out of the induced coma?

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

I agree with you that, "There is such a thin line between some of the TLE./FLE stuff and Schizo or schizoaffective that it is hard to discern." Linnie

The comment I would have is not from personal experience but overall ...try the keto diet now while he is young so he can get used to it before his palate is used to a wide variety of other foods that would make this difficult. My only 'caution' is that you will grieve more for him if his diet changes too....something else unique about him and something that he would 'suffer' with. he wouldn't necessarily know or care...

Praying, Lauren.

Thanks everyone! Donna, I have a cholesteatoma (lesion/disease of eardrum) which may damage my hearing more (a bit deaf already in that ear due to perforation) and is giving me lots of ear infections so out it must come! Lisa anti-emetics will be top of my request list! I am so lucky to have friends like you all! Thanks again