7mo still no control

[Bristol's daddy]

Hi everyone,

My daughter began having seizures at 6wks....still having them. They are supposedly partial seizures that are progressing to generalized. Some days she has 2 a day, and sometimes there are 2-3 days between episodes. Originally she was put on Keppra and when that didnt work Phenobarb was the next drug....Pheno worked some(or seemed to) but as the dose was increased to max she still didnt have control. We have tried a few other AED's, but none control her seizures. All other tests(MRI, CT, Spinal Tap, Genetic, Nutritional levels) are good, so we are kind of stumped.

She always seems to have seizures when waking up. She usually falls asleep while breastfeeding and when she wakes up she goes completely stiff(like the moro reflex, but she holds it) and her eyes look like they will pop out of her head. The TC seizure starts about 20 seconds later(sometimes, not always). We caught one seizure on EEG at 6 wks old, and the Nuero said that the first part of the episode isnt even a seizure at all.

The doctor says that some babies grow out of this kind of thing, but i am having a hard time believing anything this guy says. Any words of advise or encouragement out there?

 

[mlbandura]

I'm so sorry you, your daughter and your family have to go through this. You definitely came to the right place. Everyone here is wonderful and will give you all the comfort, advice and encouragement that you need.
I was told the same thing about my son "most children grow out of it before their teens"...He is only 6 so I can not tell you if it's true or not.. I think it's different for each person. Luke was diagnosed last year with the same type of seizures and has been on 3 different meds so far. I see it as trial and error. The first one didn't work, the second semi worked but the side effects were horrible and the current one seems to be doing well. His dr forewarned me that it may take a few tries to find the right medicine.
I see you are in Virginia, where about? if you are close to D.C and you are interested I can give you the name of a few good drs in the area.

 

[Bristol's daddy]

I'm in Hampton...The Nuero is from CHKD in Norfolk. Hopefully we can find some real control over this in the near future. She sure doesnt deserve any of this...no kids do.

 

[KellyD]

Hi Bristol's Daddy, I'm so sorry to hear about your daughter. I hope that I may be able to give you some hope though. My son began having seizures at 9 months old. They started a lot like absent seizures and they progressed to more generalised seizures as different medications were added. At one stage he was on the max of tegretol and lamictal and then we also had to add keppra because the lamictal had absolutely no effect whatsoever on the seizure activity. All tests were completely normal and his were mostly upon waking up as well so our story is very similar to yours. I am pleased to be able to say that Aiden is now almost 4 (in November) and he has been seizure free for over 2 1/2 years with the last 3 months completely medication free as well. Our dr is very confident that he will have outgrown it because he was responsive to medication and there was no found cause for his seizures. I truly understand how difficult this is and what you guys are going through. I guess the only real advice I can offer you and Bristol's Mummy is to stay positive, be strong and stick together. This experience made my husband and I even closer, it could easily have gone the other way. I would never have gotten through without him, he was the only person who could completely understand what I was feeling because Aiden was his son too and you guys will have that as well. As parents, nobody knows your baby better than you so if you feel you could get better care somewhere else then go and find it. Our dr is amazing, we were there so often we became like friends. He gave me his mobile number so I could call him any time and there was always an appt available for us even when he was fully booked. There are still awesome drs out there that will go that extra mile, you just have to find them! You have come to the best place for advice and support but if either of you would like to chat, even if it just to vent, feel free to send me a message on here or I can give you my email address. The majority of support I received was from this site not our family and friends and it made such a huge difference having someone to listen. Best wishes to you all.

 

[donnajane]

Hi, Sorry to hear whats been happening with your daughter. We have been going through a bit of a saga with out now 10month old. I have written a thread re whats been happening to him. Its so hard and frustrating as a parent watching your child go through this. I am glad they were able to catch one on the EEG. Just wish we could have the same luck with my little man, he has had one type of his episodes while having an EEG but the ones which his Nureo thinks are Epileptic events he hasn't had while EEG yet. His other tests are normal. The only thing left re tests is an MRI and the Nureo said he will prob due another EEG when we see him again in Dec. I am so glad I found this site as talking with other who understand is in a way comforting.