Over the past week Justin and I have been noticing new physical movements from Vada. Some of them seem to be typical for her. She seems to enjoy smacking her lips together and for the most part when she does this it seems to be somewhat voluntary. We have also noticed her eyes are doing some rolling and she has displayed some odd head movements. There has been two occasions (that I can remember) where she looked liked she had "jack knifed", once Justin was the one to first notice the movements. I hate feeling like I am the only one dealing with this and seeing this. I am constantly in conversations that make me feel as if the other person thinks that I am over reacting. Maybe I am or maybe I am just defensive but when Justin is right there next to me, witnessing the same thing that I am, I just feel more self assured.
The nights are becoming somewhat of an issue again. If I am remembering correctly I posted something around a month ago in more detail about the nights seeming to be the worst for Vada. I personally think that is because of the distinct difference between napping and going to sleep for the night. Our bodies have eternal clock and it knows the difference between a short nap during the day and going to bed for several hours over the night (at least I think so). As often as I have seen Vada's body movements during the evening, it just makes so much sense to me. However, proving my theory is hard to do.
The past two days (yesterday and today) I have been video recording some of Vada's "episodes". Last night I emailed them to a friend who is extremely familiar with IS/Ws and I emailed them to Vada's Neurologist. My friend responded first. Dr. Jennings called later this afternoon. He said that he had watched the videos a few times and was concerned that she was having other seizures besides the Infantile Spasms/ West syndrome. He thought that she may be having Atonic seizures. He was also concerned with her lip smacking, which tends to be a common physical symptom of several different types of seizures. He too had noticed her eye movement and that made him uneasy.
We have the Sabril (vigabatrin) here at the house just in case the IS came back, but if its not IS then there are other medications that can treat the seizures. Ones that are potentially safer to use than the Sabril. Therefore, he wants to do an EEG and the quickest way to get one done is to admit her to the hospital. So this Monday after I drop the girls off at school V and and I will be taking another trip to Peoria to see Dr. Jennings and have that EEG done. I am assuming that I will know what were looking at before her and I leave the hospital.
I have added the videos that I sent to the doctor to my blog page What Vada's Seizures Look Like if you are interested in seeing what were seeing. You can also find more on my Youtube page. Keep in mind that the movements are hard to detect, they are subtle things that you wouldn't think much of, unless you knew what you were watching for and to be completely honest, we're not for sure if we are actually seeing seizure but it seems as if we are.
Ill just throw this out there for any parents who may have experience with GERD or similar issues. If you watch the newer videos that I posted look at how she is swallowing and the sounds she is making when she does it. She does not have a problem with spitting up so it probably is not GERD, but could it be another issue pertaining to her throat? Any ideas are welcome. I know that children who have Down syndrome have a higher risk (vs. children who do not have Ds) of all kinds of medical issues so maybe this is one of them and not seizure related...?