We are home.We were allowed to leave last night after all of Twinks test came back normal. Both her EEG and MRI showed no new significant changes. We are awaiting the results of her blood test to see if her medication levels are appropriate. They were taken once but she had already had her night time dose so she would give a false reading.
All of this started on Wednesday. Twink started acting really tired and not eating as well as she normally does. Thursday she did not eat her breakfast which usually means something is wrong. The child never skips a meal unless she is not feeling well. I checked her temp but it was normal so we sent her to school. I received a phone call around 1 or 1:30pm that Twink did not want to play on the playground that she came in and wanted to lay down. She ended up falling asleep until her bus came to pick her up about a 1/2 hr later. When she came home she fell asleep again until 5 and went to bed at 8pm without a fuss. She did not eat much of her dinner.
Friday we decided to keep her home even before I woke her up. When I went into wake her though she looked dusky and her eyes fluttered as she tried to wake. They were trying so hard to focus on me but were having such a hard time. Again she did not want to eat but I made sure she had a couple of bites which had her medication in it. She was asleep by 10am and slept for three hours. awake for awhile and took another short nap from 3:30 to 5pm. Seemed fine after that. She even had a slice of pizza for dinner.
Saturday morning same as the others, she did not want to eat. I ended up feeding her. She was not happy but I did it anyway. She fell asleep by 11am and slept till 2pm when she cried out. Something she never does. When she came down she cuddled for awhile dozing on and off. She seemed to be having a hard time waking up. When she would open her eyes it was as if she was trying to come out of anesthesia. She seemed to not be herself and was having a very hard time focusing on us. After about an hour of this we decided to take her to the hospital. She was not following us with her eyes so I thought she was going into a seizure or coming out of one.
I swear the ER doctors thought I drugged her. Once we arrived she freaked like she always does. She totally hates doctors. They asked if it was possible that she got into something. I tried to tell them that she is always like this when it comes to doctors and their offices. She showed no signs of infection and the only symptoms she had was loss of appetite and behavioral changes. They admitted her for observation and to run the tests. Did I tell you they put us in a room with video surveillance? ;) Maybe they thought I had Munchhausen.
So we are here at home with no new answers. They are pretty sure she had some seizures and a possible virus. As far as the EEG not picking up seizure activity, I don't know what to tell you. The last two did not pick any up either so we are not totally surprised. The first EEG she had done she had a seizure about a week later and the second was a week or so after a seizure. I was told by her neurologist that seizure activity can be so deep within the brain that it is not always picked up on an EEG. It is obvious she has epilepsy and needs medication. It would be nice to narrow down which medication would be best for her based on seizure activity.
She still is not eating very well. She looks much skinner to the eye. She sees her developmental doctor on Monday and we need to make an appointment with her neurologist. Sorry this is so long but I thought I'd catch you all up on what happened. I took the above pictures with my cell phone, sorry about the quality. Spitfire was so happy and worried about Twink she wanted to sleep with her last night! Are they not sweet!
Thank you for all your thoughts and prayers! They worked and we are forever greatful.
