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ADNFLE- Anyone else's kiddo have this diagnosis?
Fri, 11/06/2015 - 01:50Hi, my 6 mo old was diagnosed about 2 months ago with ADNFLE. This came after an 11 day NICU stay for seizures. Luckily my career has given me plenty of experience with seizures. However, I really need to connect with another parent who "gets it." As silly as this sounds I am struggling with the fact that we do have answers and we have gotten her very well controlled in a very short time span. I find myself waiting and watching for the next seizure. Almost as if I can't fully enjoy this time right now because I don't know how long it will last. I would love to connect with someone who either has ADNFLE or their child does.
I know it can be hard on a
Submitted by just_joe on Sun, 2015-11-08 - 11:27
I know it can be hard on a parent and I know my Mom was on pims and needles after the first grand mal seizure I had. But her being on pins and needles didn't help me or my brothers and sister Or my step father. Not knowing WHEN needs to be put in the back ground. I knew when Mom was having issues and I went about my business because I wanted to be just like I was an average kid (Teen) and play with friends go hunting, climb the mountain. If she or Pete told me I couldn't do things I did them just to show them I could.Relax and understand he may ot have another seizure. As Mereloaded said the Mommy switch can't be turned off. But sinetimes taking the batteries out helps both the mommy and the kids. Live each day to the fullest since there may be no tomorrow. Mom and I have talked about what she and I went thru. She will still ask now and then how my seizures are. I will get that question from Sis too but then we talk about norman activities. All I am is just another person. We would be doing the same thing if I had a heart ailment. You want to keep him from having seizures but you have no idea about when he will have one. So step back and enjoy your time with everybody. Family is important but so are friends. I hope this helps Joe