Movement Disorders

[SelmaP.]

I dont even know where to start. My little girl has had to be airlifted from ER to Childern Neurology Hospital. The reason why we went in ER was one afternoon, she woke up from her nap, but she seemed to be "spaceing". She would respond to my voice, but no eye contact.....I knew it something has to be wrong and we just took her in ER, which is 5 minutes from our house. At the time she was in room 15 minutes passed. Then, there she started to have a few red spots behind her ear and on the back of her neck, then cheek.and every spot become one big bright red color all over her head, neck and face. You could "see" the pressure of blood that coming in to her head. She was unresposive. They thought that she was experiencing some kind of convulsions, and dr did gave to her intravenus valium, but she was still not geting back for hour, then he caled life team and they transfered her to hospital (from the geting in ER to get to hospital time was 5 hours and she was still unresponsive). Why doc in ER was thinking that she is having seizures was b/c of her twiching of 4 toes on her right foot and twiching of tip of her tongue, but that twiching started 10 days before that afternoon, it wasn't related. While she was 9 days in hospital, she spent 6 days in PICU. She was "out" for more than 24 hours. They did all kind of tests, EEG. MRI blood work, lumbal tap....and everything came OK. Her twiches would go away when she is sleeping, otherwise tip of her tongue and 4 toes on right foot would twich constantly. They put her on 24 hours EEG and her ped. neurologist told to us that she NEVER has any kind of convulsions, epilepsy or seizures. He said she has non-epileptic myoclonus, which is not diagnosis. B/c she was on Klonopin (0.075) he said we will decrease on 0.50 and gradualy take her off that, b/c she doesn't need. He recomended "second opinion" to Childern's Mercy Hospital in Kansas City,MO and that can take a monts before they answer to them or they can just say they can't take her in. Her symptoms are geting worse - when we got back from the hospital (5 weeks ago), her whole tongue is twiching, leg from her knee down and few days ago I have noticed lightly twiching on her three fingers on the right hand. Everything is happening (affecting) just right side. Again, the moment she is in sleep all those twiches will stop. Prior that day when we had to take her to ER, she has had vomiting for whole 10 days. When I contacted her doc. he told me :"Nah, it's nothing to worry about, something's going around, dont worry if she doesn't has a fever", which she didn't. At the same time, she was "teething" and refusing almost anything solid food, except milk.she drank an exccesive amount of milk daily...almost the only thing that she would "eat" at that time. She kept vomiting and drinking milk. One morninh I have noticed "stifness" in her legs and "difficulting" walking which lasted for an hour. I am sure that she has a some chemiical imbalance (Mg r Ca or even Alkalosis) but doct. thinks that she has to see neurologist. On my question to her neurologist what another neurologist will do different that he did for 9 days..he told me :"We need a second opinion"............Now, will anyone, please, answer to me(while I am waiting to get a chance to see another doctor and get tha second opinion) has anyone seen, heard of experience anything similar like this and is there any suggestion what to do, what to look in to, what could be........please, any respond is more that appriciate ! THANKS A LOT IN ADVANCE!!

[UserK7889]

Hi,

I see that this post is quite old. I would love to know if everything has worked out okay!