Neuro changed diagnosis

[momto2]

My 14 month old has has a few seizures January, after the first four in September. Finally saw the pedi neurologist again yesterday and she said he has epilepsy. Very hard to hear, but I knew it was coming.

She still said it's possible he will outgrow this. Really? Do people outgrow non-febrile seizures???

I'm trying to keep it together, but it's very hard. I'm scared. I want him to live a normal life, I know, preaching to the choir here. Part of me wants to hide. It's happened twice when we've been out with our playgroup just this month. While everyone is helpful I know they're freaked out too. Staying away and hiding seems wrong too. I certainly don't want this to take away from other parts of his life or my daughters too.

So I guess we just take the meds and keep going? Nothing more to "do". Right?

 

[Nakamova]

You might find this link helpful: http://www.epilepsy.com/info/family_faq

Among other things, it says:

Most children will outgrow their epilepsy but it is hard for doctors to predict which ones. Children who have normal development, a normal EEG, and no seizures while they're taking medication have the best chance. So do children with certain types of epilepsy that are usually outgrown. These include the reflex epilepsies and benign rolandic epilepsy. Children with benign rolandic epilepsy routinely stop medications after age 15. Some who have just occasional seizures don't need medication at all.

You'll need to take things one step at a time. There may be adjustments to make depending on how your son's seizures respond to the meds. And you may need to educate a number of people along the way (friends, family, teachers, schoolmates). It's normal to be freaked out by epilepsy, but eventually, you (and they) will reach a comfort level with it. It might help to think of epilepsy as a disorder along the same lines as asthma or diabetes: serious, potentially chronic, very common, manageable.

For treatment, the meds are the standard approach, but there are others out there. It's worth acquainting yourself with them if seizure control or side effects prove problematic. You can read a bit about alternative treatments here: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments In addition, it can be very helpful to be proactive in a variety of ways: See http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Hang in there, and don't let the epilepsy diagnosis overwhelm you.

 

[Fedup]

There is always plenty more to do, like live life the very same. This does not change things or your 14 month old. Yes its possible to out grow this, the operative word is out grow yes people can out grow this, nothing is guaranteed.

He can and will lead a normal life if you want and let him. You treat him the same as anyone else, praise when its deserved, punishment when its deserved. He has not changed so why want him to change, he has a problem but so do a lot of us and it could have been any one of a thousand other things. So yes you are right there is nothing more to do except live life for life and take the good with the bad.

 

[KarenB]

Keep up hope -- many childhood seizures are outgrown.

Have you considered the Ketogenic diet? This may enhance his chances of outgrowing the seizures (if seizures can be stopped through meds and/or diet, this greatly enhances the chances of becoming permanently seizure free).

 

[donnajane]

Reading your post made me think back on my own journey with our little man, a journey which is very much still in progress.
I have only heard the Dr's say 3 things with confindence in the 18months they have been looking for answers, 1 was that he had shudder syndrome and outgrow it - he did but his event's just altered into another type, 2 he has a brain lesion and his Nureo only found that after he thought like the first nureo he would outgrow his event's and he didn't and this Nureo said he just had a "feeling" something telling him to keep looking and 3. the most confident thing I have ever heard any of his Dr's say was his meatbolic speciliast on the 20th Jan don't stop looking for answers. I said to her that I felt like letting my little man just continue on with his seziure meds but stop going to appointments seeing specialists, just to let him be a toddler for awhile. She looked me straight in the face and said I strongly advise against it. If you don't feel things are settling maybe keep looking for another way which can help your child more.

The most comforting thing I was ever told was from one of students who has Epilepsy, she's 14. I asked her what it was like for her and she said she didn't remember her seizures so the only thing she wondered was what others thought of her while it was happening. She said she had no recollection of pain or anything while it was happening. As a mother this gave me a lot of comfort.
My little man is to little to tell me what is happening and we are just hoping that as he gets older and is able to communicate more. He will be able to tell us more which will in turn allow the Dr's to help him more.

Might sound strange but I ask his child care to remind me how normal he is as sometimes I find myself so focused on what's comming and his specialists are always asking me to write notes/keep journals etc I am now learning to focus on my little man not what happens to him. He has the most beautifal smile which lights up a room. He seems to draw everyone to him. I feel blessed that he is like this as to look at him you would never know the journey he has been and is still on.

I wish the Dr's could say whats happening to my little man, any diagnosis would be a help as then they could start to work out the best way to help him. But I have now learn't how little nureologists and specialists really know about the brain and the chemical's within it. I know I have been on a huge learning curve and this will continue.

Take Care.
Donna