Here we go again

Since all of Isabelle's issues began when she was only a few months old I started noticing some weird facial expressions and movements - usually when tired or hungry. They come and go and I always dismissed them with the thought in the back of my mind of possible seizures. Because of my strong need to figure things out and be educated I struggle with figuring out if I am just very educated and notice things or if I'm over reacting to something totally normal. There have been times to support both of these. I am, and not to pat myself on the back, usually right in my suspicions, however. I have always thought God gave me a gift of intuition, which I do not always know how to use correctly. Sometimes it causes me a panic attack and it turns out to be nothing. Other times I handle a situation very well because I was prepared. So anyway, in the back of my mind I always wondered if this was happening. Her physical therapist has mentioned seizures a few times to me throughout the year she's been working with her too. The last few weeks Belle has been waking up a lot at night. Crying, screaming, only to fall asleep a short few minutes later. Also, in the last few weeks these facial grimaces have been more frequent and obvious (which would go along with with how these facial things happen when she's tired). I finally called the pediatrician today because I just couldn't take the strong sense I had that something wasn't quite right. They wanted me to bring her in and see if she's teething, has an ear infection or if there was other concerns, like seizures. So I brought her in and they checked her ears, throat, breathing, mouth, etc. Everything was great! Which, by the way means the preventative medication seems to be working - haven't had to use the nebulizer and has had nothing other then a runny nose once in the last couple months. She did notice that she has her 2 year molars swelling up in the back (so my delayed child is apparently an advanced teether, since she is 17 months). :) Which Audri was too. So she was about to dismiss the issue as a teething thing when she was sitting down to give Belle a sucker, she saw her due the weird eye/face thing. She said...hmmm...she just did what you were describing. She does believe it's seizure like behavior. Sigh... She said it still could be a behavioral thing since she does need more sensory input being delayed and having low muscle tone. But because it's happening often and she saw what it looked like, she would like us to see the neurologist again. I called the neurologist in minneapolis and they are going to have her come in for an EEG (she had one done when she was a few months old - which was normal) and said in the mean time try to catch it on tape so he can see it. In case she doesn't do it when we go in. The nurse mentioned May 5 but is still waiting to hear back from the dr if she should be seen sooner then this. May 5 is already the day she goes to see her developmental pediatrician for her braces and a check up on her development, so that would actually work out if the time is in the morning. She will see her neurologist at Mayo clinic on the 21st of May too and I will be pushing for the spinal tap to be re done and see what she thinks. If you remember, Belle was being tested for metabolic disorders with the spinal tap, and she had some border line results. The one disorder that was borderline was because she was not experiencing seizures...hmmm...well? It will be interesting to see if this is what's going on and maybe finally get a diagnosis we can work with. Since the very beginning all these doctors were telling me that as Belle gets older more symptoms may arise that can bring us to our diagnosis. Or the old symptoms may just simply go away. While we may be getting closer to a diagnosis, I am worried and scared about her having seizures. Even though hers seem to be brief - a few seconds of blinking her eyes tight, or holding her mouth open or staring off to the side - it's still not easy to wonder what this is and what the future may hold. My helper was unable to start this week and will be here next week and I'm hoping to train her in quickly since right now I'm counting on Jose - which is virtually impossible - to leave work or having to close the daycare last minute for these appointments. I have my sleep study consult on Friday as well, so I had about a month and a half off from appointments, but I do believe they are picking up again!