Epilepsy

[MadamRose]

My DD2 who is 11 months old got diagnosed with epilepsy yesterday after almost 3 weeks of seizures. Even though we had an inkling for a while it's only just properly hit me today, when she had her first lot of meds. And right now it feels like it's all my fault

 

[ItsJana]

I had epilepsy as a child. What kind of seizures does your daughter have? Mine were petit mal or absence seizures, and children with these kind of seizures do grow out of them. You have nothing to feel bad about, it's not your fault and kids with epilepsy do not suffer any learning delays.

 

[annanouska]

My son was diagnosed today he has his meds I'm so worried. I've been told he likely will outgrow, will wean him off in 2 yrs and see how he is. I'm afraid of the side effects he's been given tegretol so I looked it up now I'm so upset

Xxx

 

[Mapleroo]

So sorry for the diagnosis. I have seen my son have quite literally hundreds of seizures and it's not something I've ever gotten used to. To date (he's almost 14) he has had about 5 different types and been on about as many different medications. They started when he was 4 months and had them almost constantly throughout his first year of life. To his neuros utter shock and amazement he has managed to get by these last 13 years with only one every few years. As I said he has been on lots of different meds and the only one that affected him negatively was oral steroids (but that's pretty heavy duty and for a very specific seizure type which I'm assuming your LO doesn't have). The side effects are scary though, but I'm sure the dr wouldn't have prescribed them if the benefit didn't out way the risks. Good luck on this new journey, I know it's really hard.

 

[annanouska]

thanks mapleroo

It's easier to give them now I just second guess should we be doing it?! He has daytime absences which are nowhere near frightening like proper seizures and also they think he has night fits too based on his EEG. X its a horrible condition very mis understood i think x