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5 month old just diagnosed - support needed

Sat, 12/30/2017 - 00:44
Hello all. Just yesterday we received the diagnosis of epilepsy for our 5 month old son, Crosby. He had 12 seizures from Christmas Eve through 12/27 when the children’s hospital finally had us come in. An overnight video EEG, a sedated MRI, and plenty of tests later confirmed epilepsy. No other specifics related to the type or anything, but enough to give us an answer. I know it has only been a day but I thought I was truly going to be ok with this. I would learn about it, and educate friends and family, and advocate for our son...I know I’ll do all those things, but right now I’m just feeling sad. Sad our son will have this additional challenge impacting so many areas of his life. Sad that I already see changes in how he acts. Sad I didn’t take more videos of my happy, babbling, baby boy before he started taking Medication three times a day. Sad I won’t have the same time for our three year old daughter because so much extra time will be given to our son. Sad that our world got so rocked in no time at all. Yes, I know we have a lot to be thankful for. I’m thankful we got a diagnosis and his medications currently stabilized. Thankful he has had two days without a seizure. But my goodness, I’m so overwhelmed right now. Anyway, sorry if this was not the right group or the right thing to write but but I’ll use my new card as my free pass for that. I think I just needed to get through these emotions quick so I can continue on. Any words of encouragement appreciated.

Comments

Thanks for the feedback. I

Submitted by CrosbysMama on Sun, 2018-01-07 - 22:39
Thanks for the feedback. I like the 400m dash and marathon training analogy! We decided to do a 5k in Iowa City for epilepsy this June so the reference is in line with our training ideas (have yet to get outside to run yet, it has been like -30 here). But our little guy had a seizure tonight. We were 11 days seizure free prior to that. I thought looking at it from the start would be encouraging cuz you have to start somewhere but it sure sucks to go back to zero. We called the pediatric neurologist on call and they upped his dosage of keppra, hoping that will help. Just a bit discouraged and sad for Crosby. Well, here’s to hoping for a good night and start back on our no seizure streak. 

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