We have a diagnosis

kcisthebombdotcom · May 2013

It's epilepsy.

i was assuming I'd feel some relief to have an answer to all the unusual things we noticed-not so much.

any site recs from other moms in my shoes? I'm totally overwhelmed.

mommy0411 · May 2013

(((Hugs)))

thetwinkies&Vivi · May 2013

Thinking of you. I have no resources,but wanted to offset thoughts.

ToastieSimons · May 2013

You're family is in my thoughts. It's a bittersweet moment when you receive the diagnosis.

funchicken · May 2013

I don't have any experience with epilepsy, but I just wanted to send some positive thoughts. Give yourself some time to process the diagnosis.

lazysusan · May 2013

Here's a website I mainly go to. https://www.epilepsyfoundation.org/ It's got chat boards for parents.

My DS has been diagnosed about 5 years. He has been seizure free for 2 years and we are starting to wean medication. It's a tough thing to see your kiddo go through. A lot is unknown as to what causes seizures. I think I read in about 70% of people the cause can't be found. Many are well controlled with medication. I don't know much about your DC's background, but wishing you both well as you start the journey.

meldoo2002 · May 2013

I agree it's hard to hear it even if you know it. I still prefer to say "seizure disorder" than epilepsy for some reason. It's nice to have answers and a plan though.

ally81698 · May 2013

Best advice I can give is to be very patient with finding the right meds. Unfortunately, they come with a lot of side effects and it's hard to find the right one (or the right combination of two) that will 1) be effective in controlling the seizures and 2) have the least side effects of your LO. We are going through that now. We are switching my daughter from Phenobarbitol to Keppra and it hasn't been easy. It takes a little while for their bodies to adjust to the meds.

Hang in there - it's good that you have answers so you know how to treat it. There is a very high liklihood of children outgrowing their seizures. There is so much information out there on epilepsy - just make sure you don't overwhelm yourself more than you need to right now.

kcisthebombdotcom · May 2013

ally81698:
Best advice I can give is to be very patient with finding the right meds. Unfortunately, they come with a lot of side effects and it's hard to find the right one (or the right combination of two) that will 1) be effective in controlling the seizures and 2) have the least side effects of your LO. We are going through that now. We are switching my daughter from Phenobarbitol to Keppra and it hasn't been easy. It takes a little while for their bodies to adjust to the meds.

Hang in there - it's good that you have answers so you know how to treat it. There is a very high liklihood of children outgrowing their seizures. There is so much information out there on epilepsy - just make sure you don't overwhelm yourself more than you need to right now.

my neuro actually did Keppra as the first med to try. It's only been 2.5 days but so far, so good (though I likely just jinxed it, ha), a few dizzy spells here and there but nothing too bad. Definitely a huge increase in energy, more responsiveness, and only one short episode of eyes rolling back. Seeing how quickly she's improving kicks in the mommy guilt though- I wish I knew those staring spells were seizures since they've been happening for a long time. . I'm also irrationally angry at every specialist who I asked what is wrong with my kid, one day I can't get her to shut up and the next day she's in her own world and doesn't say a thing and they shrugged their shoulders. I also think its funny the least educated person on her team was the first to suggest seizures. i suppose these are all normal emotions at this stage in the game though.

Unknown · May 2013

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ally81698 · May 2013

KC_13:
ally81698:

Best advice I can give is to be very patient with finding the right meds. Unfortunately, they come with a lot of side effects and it's hard to find the right one (or the right combination of two) that will 1) be effective in controlling the seizures and 2) have the least side effects of your LO. We are going through that now. We are switching my daughter from Phenobarbitol to Keppra and it hasn't been easy. It takes a little while for their bodies to adjust to the meds.

Hang in there - it's good that you have answers so you know how to treat it. There is a very high liklihood of children outgrowing their seizures. There is so much information out there on epilepsy - just make sure you don't overwhelm yourself more than you need to right now.

my neuro actually did Keppra as the first med to try. It's only been 2.5 days but so far, so good (though I likely just jinxed it, ha), a few dizzy spells here and there but nothing too bad. Definitely a huge increase in energy, more responsiveness, and only one short episode of eyes rolling back. Seeing how quickly she's improving kicks in the mommy guilt though- I wish I knew those staring spells were seizures since they've been happening for a long time. . I'm also irrationally angry at every specialist who I asked what is wrong with my kid, one day I can't get her to shut up and the next day she's in her own world and doesn't say a thing and they shrugged their shoulders. I also think its funny the least educated person on her team was the first to suggest seizures. i suppose these are all normal emotions at this stage in the game though.

Second piece of advice - please do not blame yourself. You are doing everything you should be doing right now. Kids are so unpredictable from day to day so it is SO hard fto tell what's acting "normal" vs not. I constantly look at her and think "is she staring because she's tired? or is that a seizure? or am i acting like a crazy mommy?" We have to stop putting so much pressure on ourselves because we simply can't be super woman ALL the time.

That is awesome to hear the keppra is doing well!! You should feel great that you are moving in the right direction!!

kcisthebombdotcom · May 2013

ally81698:
KC_13:
ally81698:

Best advice I can give is to be very patient with finding the right meds. Unfortunately, they come with a lot of side effects and it's hard to find the right one (or the right combination of two) that will 1) be effective in controlling the seizures and 2) have the least side effects of your LO. We are going through that now. We are switching my daughter from Phenobarbitol to Keppra and it hasn't been easy. It takes a little while for their bodies to adjust to the meds.

Hang in there - it's good that you have answers so you know how to treat it. There is a very high liklihood of children outgrowing their seizures. There is so much information out there on epilepsy - just make sure you don't overwhelm yourself more than you need to right now.

my neuro actually did Keppra as the first med to try. It's only been 2.5 days but so far, so good (though I likely just jinxed it, ha), a few dizzy spells here and there but nothing too bad. Definitely a huge increase in energy, more responsiveness, and only one short episode of eyes rolling back. Seeing how quickly she's improving kicks in the mommy guilt though- I wish I knew those staring spells were seizures since they've been happening for a long time. . I'm also irrationally angry at every specialist who I asked what is wrong with my kid, one day I can't get her to shut up and the next day she's in her own world and doesn't say a thing and they shrugged their shoulders. I also think its funny the least educated person on her team was the first to suggest seizures. i suppose these are all normal emotions at this stage in the game though.

Second piece of advice - please do not blame yourself. You are doing everything you should be doing right now. Kids are so unpredictable from day to day so it is SO hard fto tell what's acting "normal" vs not. I constantly look at her and think "is she staring because she's tired? or is that a seizure? or am i acting like a crazy mommy?" We have to stop putting so much pressure on ourselves because we simply can't be super woman ALL the time.

That is awesome to hear the keppra is doing well!! You should feel great that you are moving in the right direction!!

rationally I know you're absolutely right. My rational side hasn't been winning out so much lately. Lol.

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