Hi! I'm not sure if this is the right board? Epilepsy.

eav2c

Hello ladies! I hope you all are doing well. I'm not sure what board is right for our situation but I wanted to drop in.

My son was diagnosed with epilepsy after having multiple seizures. The doctors originally thought they were febrile seizures but he had two seizures in the hospital at Vanderbilt and they were ruled out. At the moment he has been diagnosed with Tonic-Clonic seizures. Colin will be 6 months old on Saturday. He is on anti-seizure medicine 2x's a day (Keppra) and we are more or less taking this day by day. Both the MRI and EEG did not show anything but we are still anxious about the entire situation and emotionally spent. 

Any other moms of LO's with seizures here? Hope I'm at the right place. 

SaucySarie

Welcome!  My (triplet) girls both had Infantile Spasms and now just one of them has Epilepsy (myoclonic seizures)  If there is ever anything you need, feel free to ask.  At this point I feel like I know a lot about seizures

MrsBalletStar05

Technically my older son was diagnoses with this...but he is off medication now and hasn't had one in a very long time.  I will always keep an eye out of course, and I'm glad I know what to do if he ever has one again.  My BIL was with me when he had his first, and that was a true blessing.  My BIL had epilepsy as a child and was able to reassure me and calm me down.  Welcome though, you are for sure in the *right* place :-) 

eav2c

Thank you for the response ladies. I really appreciate it. I'm feeling very emotional and confused. I don't know what to do, how to respond, or how to go on... I know that sounds rather dramatic but I just am so afraid. I'm afraid of triggering him, I'm afraid of hurting him. The bright side, according to his doctors is that nothing showed on the MRI and EEG... that "unidentifiable" seizures are more likely to be grown out of. I can't help but feel some sort of guilt. I keep running through my mind what I can do better... Eat better (I'm EBFing) or if I had been more persistent with my prenatals. I just need to come to grips with this all. I'm finding myself freaking out when his face even turns slightly red or when he makes a strange noise. He gets gas quite frequently and he will tense up and I find myself closing my eyes and praying that this isn't the "next time."

Any advice? Suggestions/resources? Were either of your children on Keppra? He seems to be acting waaaay cranky and I'm finding him not being as personable as normal. Maybe it's all in my head. Thanks again.

meldoo2002

My twin boys have epilepsy.  They have an odd syndrome that goes with it... para.blahblahblah something or other.  They are partial-focal occipital seizures and only have them when they sleep and it involves them vomiting and being in an altered state for up to an hour.  They are both on 2ml of keppra in the morning and evening.  Their EEGs did both show seizure like patterns.  Right now Nathan has had 1 seizure and Joey 4 (3 were before they figured out what was going on).  We are pretty new to this still... MRIs are scheduled for Nov. and Dec. and we have a 2nd opinion at Children's in Boston in Nov. too to make sure we're not missing anything.  

lazysusan

What's tough about seizures is a lot of times they have no idea why they are happening.  My 6 year old started having them at 15 months.  He's been well controlled on generic keppra.  Take it one day at a time and enjoy your baby.  nothing you have done has caused the seizures.  

Paigeo

Welcome to the board.  My DD has epilepsy.  Her seizures started when she was 2 weeks old.  She is also on Keppra (now the generic version).  All of her EEG's and MRI's have been normal.  There is no obvious cause for the seizures... which is pretty common.  Luckily as long as we are on the right dosage it keeps her seizures extremely well controlled.  Please let me know if you have any questions.  I completely understand how scary it is.