possible epilepcy for my baby girl!!

[mumofkaitlinellamia]

Hi I am new at this forum thing, and Epilepcy thing for that matter.
My 11 and a half month old is awaiting a refferal to a paediatric neurologist to start testing for epilepcy. Since about 2 weeks of age she has had choking type episodes in her sleep, these have happened about 12 times now and only ever in her sleep. I would wake and notice her jerking trying to get breath, then she would be red in the face and have a thick mucus/foam suliva in her mouth. Once I picked her up and cleared her mouth it would eventually stop, then she would be irritable for 10 mins or so then she would go back to sleep or just be fine. We were treated by a paediatrician and we thought it was silent reflux. On meds for 4 months and stopped them in november 2010. She had 2 episodes since then then nothing. Early Feb11 she had a full siezure in the car, arms and legs jerking, very stiff eys jerking, then she stopped breathing and was unconcious for about 2 mins. ( scared the life out of me!) In hospital they decided it was a febrile convultion and her temp must have dropped to normal in the 3mins it took to get there.
all has been fine until last thursday 14th april when we got her out of bed and she was at the end of a seizure and still twitching but limp and her breathing was slow and laboured. Rushed to hospital ( 1 hour drive/100km) she was barely awake all way in, then went to sleep once we were at the hospital. 1 and a half hours later she had another big seizure lasting around 3 minutes of convultions etc, then about 20 mins of further tremors and it took about half hour from the time of the seizure to wake up and be with it. Mia then was very distressed and irritated, followed with been spaced out.. We now are just hoping this is managable and we are prepared once the tests start. Our paediatrician has now said he believes the initial episodes she was having since birth and the frequent eye rolling that i was concerned about when she was a little baby may well have all been seizures and we are looking at epilepcy.
It is so scary as a parent to see your kids go through something so horrifying as a seizure, and then coping with my own fears and panics. I know Im not alone in this, but I am interested in how other people have come to a diagnosis of epilepcy and how they cope. Do these things i have described sound like general characteristics of epilepcy? Mia is a bright bubbly little girl, my third child and 3rd daughter.
Her seizure at the hospital was also the same as the one in the car. As you could imagine I have been glued to the internet since getting out of hospital with her earlier this week.. I think the thing i am stuggling with most is what my reaction will be if an when it happens again as we live so far from town and i have 2 other girls that are 5 and 3 that. But all that is something i will have to deal with when the time comes. I have my fingers crossed that once we head to adelaide for tests we start to get things under control.

I have also noticed in the past few days that whenever she goes to sleep for a nap or at night she does a lot of twitching and isnt sleeping very soundly. today i nursed her to sleep to see if i could feel anything and as she was going off to sleep she had 3 episodes of her whole boddy would sudder and tremor. i was trying to catch it on the video camera to show the doctor when the time comes.

[Nakamova]

Hi mumofkaitlinellamia, welcome to CWE!

I am sorry for what you are going through, I know it must be very tough to see your little one struggle. There are many parents who are CWE members, and I'm sure they will chime in with comfort and advice. If you haven't already, you should also check the Nursery forum here.

What you describe does sound like seizures. Has she seen a pediatric neurologist? That would be the next step towards getting a diagnosis and figuring out a treatment plan. Keep taking notes about Mia's behavior. Track anything that might be relevant -- not only unusual symptoms or behavior, but also sleeping and eating habits. Those will all be very helpful to the doctor.

Just a note of reassurance -- As someone who has had quite a number of tonic-clonics (also known as grand mal)s, I can tell you that there is no pain or fear or suffering during the seizure. Being unconscious has a protective effect. I'm sure the seizure Mia had in the car was more painful for you to witness then for her to experience. Afterwards there can be a bit of soreness, confusion, fatigue, nausea. The heavy breathing you describe is a normal post-seizure behavior too. But there are no painful memories of the seizure itself.

I hope you are able to get some answers soon. keep us posted.

Best,
Nakamova

[mumofkaitlinellamia]

we are still awaiting a call from the paediatric neurologist. hopefully they cill get the ball rolling soon. fingers crossed.

[tase37]

Hi!
I'm very sorry to hear about your daughter, my daughter had her first seizure when she was 2 days old it lasted 3min..I can't even think about how I felt at the time..it was so scarey for me She was admitted in to ICU that same evening and had an even bigger one that lasted 4min.. the seizures carried on even though she was on keppra and other medications..she was in ICU for 3 weeks all in all and medication carried on at home..the heart breaking thing was that I couldn't be with her all the time as I have 3 yr old girl at home too..but I visited every day and breast fed when ever they let me, I also took my milk every day for her.. when she arrived home the seizures were more under control even though she still had them.. one was so bad that we had to give her the first aid med but then they got less and less..now she has been seizure free since Feb and isn't on medication any more..must keep touching wood..we don't know yet what the cause has been for the seizures as they never found anything but there is still a high risk that they could return.. I know how you must be feeling at the moment and how heart breaking it is..please let us know how things go for your lovely daughter!!