Hello all! Im so desperate for input please help me. Sorry that this is long but I want to write all the details so maybe someone can help us.

Im really going thru a tough time with my 15 1/2 year old daughter right now. Not only does my husband (her step father) have Epilepsy and we have been struggling for 5 years since hes been diagnosed, now shes having some sort of issues that so far no one knows whats wrong with her.

It started back in Auguist when she was at band camp. She was ill with sore throat and slight fever and stomach ache. Later on that evening she developed severe FULL body jerking for over 2 hours and they took ehr to Hospital nearby via ambulance and paramedics. She was alert, and conscious and aware of her surroundings so no one seemed concerned it was seizure. They hydrated her and did some tests (Strept was one of them and it was negative) and even drug tested her which was negative and sent her back to the dorm. The next day she was told to rest and no marching in the hot sun. So she didnt. later on that evening the full body jerks started again, they called the medics right away that time. They lasted about an hour. Once again, they hydrated her, did some more blood tests and then a CAT scan all of which was negative AGAIN. She never lost consciousness. Tehys ent her back to her dorm AGAIN.

The next day they came home. She was ok, just weak, severe headache and body aches and pains and was exhausted. The following day at home she woke up and was up for about 2 hours when she started severe jerking again. AGAIN, she was alert, conscious, aware of ehr surroundings and could talk. We brought her to a local Hospital AGAIN because thats what pediatrician said to do. Once again, she was tested this also included an ASO titer which ahs to do with untreated strept and rheumatic fever. That test was negative, EEG was done that was negative (but she wasnt jerking during that). The Pediatrician in ER saw her have an episode and stood there scratching his head in confusion becuase he never saw ANYTHING like it before. She followed his commands and did what he asked her to do and said well if it was seizures then she wouldnt be able to follow commands. He was stunned and again, sent us home and no answers. In the meantime my daughter cried and was scared wondering what was wrong with her.

She saw Pediatrician that week for follow-up. She still had right sided hand and arm jerks eveyr now and then but they dont last as long as full body jerks. She was tired all the time, severe headaches and joint pain. Pediatrician said maybe she had some sort of virus and well let it run its course and if it continued to see a neurologist.

September went by she was doing better, October came and poof two more episodes of full body jerking for over an hour. No loss of consciousness. She would just be completely exhausted and sleep and lay down for a long time after they would settle down, and once again terrific headache afterwords. Usually she feels weakness in her knees before it starts and has a headache.

So this time I decided it was time to see Neurologist. Of course, good old insurance plans they were limited with Pediatric Neuros but we went to one in the plan. She ordered MRI w/ and w/out contrast, and some MORE bloodwork including lymes diseaase which would make sense becuase of ehr joint pain, fatigue, daily headaches and small twitches in her hands. She hasnt had any episode sin November so we are pleased about that.

MRI shows a very small Pineal Gland Cyst in her brain but nothing to worry about we were told. Thats not whats causing her issues. Her blood work for  a bunch of other things as usual came back negative. Other then whats going on with ehr shes a healthy, active athlete, an honor student, very driven and focused and overall very good kid.

 So that Neuro said its almost like she has seizures so go see Seizure Doc. So we made a desperate call to my husbands Epilepsy Neuro who we adore and is a great Doc. They took my daughter the very next day which was amazing. We had made an appt with another Pediatric Nueor for second opinion too but that appt we have to wait for which is in April 2009 if you can beleive it.

In the meantime, still no more big episodes but she said she blacked out by her locker when she was talking to her boyfriend about two weeks ago which I yelled at her for not telling me or having someone call me at work. I understand her frustration and wanting to turn her back on all this becuase she doesnt like to be slowed down nor does she want to believe there is anything really wrong with her. I was told this is typical for a teenagers but whatever.

So Hubbys Doc saw her. He said definately soudns like seizures to him. He is a specialist so I guess he would know. My exhubby, hubby and my daughter and I were sorta stunned becuase we know what my hubby looks like when he has his seizures; he either drops to the floor withi a grand Mal or hes completely incoherant and "off this planet" and acting bizarre for two minutes and then snaps out of it (again, his are caused from a car accident years ago before I even met him). So for us to know that my daughter can talk thru her episodes and perform whatt he doctor asks her its bizarre to hear that it stil could be seizure activity. The only thing she cant do is stand up and walk. Shes too weak when they striek and shes jerking to hard to control walking or standing.

The toher thing is that this Neuro ran ANOTHER ASO antibody blood test. He said it still could have been Rheumatic Fever and I told him the Doc did it in ER and it was negative. But he explained the blood test was run too soon it can take up to 4 weeks for the antibodies to show. Once again, that came back negative.

Now shes scheduled for an ambulatory EEG from Dec 12 -15. Shes upset over all this. Its interfering with her sports and her life and we are all stumped as to really whats going on. Shes STILL Struggling with severe fatigue, joint pain and muscle pain, and daily headaches some of which are really bad.

 IS ANYONE OUT THERE RECOGNIZING IF THIS IS TRULY SEIZURES OR NOT? ANYONE WITH SIMILAR EXPERIENCES WITH THEIR CHILD? PLEASE HELP. I dont know where else to turn. This is really tough on her and it breaks my heart. She will be going for drivers permit next year and getting ready to drive but in NJ she wont be able to if this truly is Epilepsy. She knows this and it freaks her out big time.

My biggest thing with EEGs is that my hubby ahs had several of them. 90% of them never showed a thing. I feel liek we are going to torture her with this testing and still have no answers. This is why Im reaching to any of you who may recognoze these symptoms and the full body jerking and help us find the answers for her.

Oh and NO theres no family history of E. but I was told it doesnt have to be a genetic thing. I always thought it did unless like my husbands seizures it was from trauma.