Please Help!!

[staceyd13]

Hello,
I have a child who is three years old and he has benn having eposides that nobody has been able to properly diangose.He has quadrapeligic infantile cerebral palsy, microcephly and cerebral atrophy. It started almost 7 months ago when he was sitting in his highchair playing with toys all of a sudden his arms stiffened and shot stright up above his head which is not something he can do by himself. Also during that eposide his pupils dilated and his head would turn toward his right arm. These eposides would happen regularly  for a month or so then die off and return a few weeks later. His neurologist did a ph test that was normal and then an impedance study that had some abnormalites and they told us it was reflux and put him on 30mg of previcid twice a day. They also did an video eeg and said it was normal except that he had slower than normal brain activity. He went awhile with hardly any eposides and then all of a sudden one night started having then every night and we noticed new attrubits to them.
We noticed that right before they would start his fingers will start turning in odd positions and then it will travel down his right arm until it would go up then it will just hang there for about 20 seconds and then his left arm will go out to his head will go to the right like before he will squint his eyes and grind his teeth. After that it will work its way down his body stiffening his back, torso, legs and feet until he is holding his whole body except his head off the floor with his heels. That will last about 40-50 seconds then his legs will free up and he will start laughing then shivering and finaly crying while he is laughing he will bycicle his legs and flail his arms. These eposide often last for three to four minutes. I don't what to do anymore afterwards he get very agitated and tired but can't seem to fall asleep and it seems like when he gets in a deep sleep they happen again he will have anywhere from one too four of the full eposide each night and in bettween they seem like they will wake him up with stiffening and then die off for a little while. Please help me understand we have been sleep deprived for almost a month now and they keep telling us they are no seizures but nothing else makes sense

[AvaH]

Hello,
My son is 2 years old and was diagnosed with epilepsy in July this year. His seizures came on when he got tired, and his arms would shoot straight out, his pupils would dialate, his head would trun to one side and his face would turn red. After the seizure was over, and it only lasted 25-35 seconds, he would be tired and limp like a newborn infant and sleep for up 2-3 hours at a time. He would always have them in the night. They put him on Keppra and he has not had a seizure since. I am still sleep deprived from anxieties I have developed from this whole thing with my son. No doctors have really asked how I am doing that have treated him. Though I think I would crumble if they did ask. I am not the same person since this happened to my son, because it happened to me too if you know what I mean. I think the others are right, video tape it, journal log it, lay your child on his side through the episodes and make sure he can't hurt himself or hit into anything. Keep us posted and much sympathy.
Ava

[urpal]

You poor girl...what a hard time you are having.  It is awful, feeling so helpless.  The advice from hell1971 is a very good idea so you must do this and show it to your son's doctor or consultant.  I am afraid to say I think it does sound like infantile epilepsy, but I am not a doctor.  I wish you all the best and send you and yours hugs and kisses from bonnie scotland xxx

[hell1971]

Why dont you record them on video so you can show them!