Rylie Joyce Nantau was born May 16, 2006 after a very routine pregnancy. At birth, she weighed 8 lbs. 6 ounces and to all appearances, seemed a normal, healthy baby. While in hospital, though, my husband and I noticed that Rylie seemed to tremor more than we had seen when our first daughter was born. We inquired about it, but were told that it while she did seem to tremble more than usual, it wasn't anything to worry about.
Rylie was a quiet baby. She seemed to sleep quite a bit and often had to be roused to be fed. Again, we felt like something wasn't quite right, but put it down to perhaps her just being a less than active baby than our first. At about three weeks of age, while breastfeeding, I noticed her eyes flickering to the right, but wasn't sure if she was just trying to focus. We also noticed that she would turn her head to the left and flex her left arm up as if she was fencing on a fairly regular basis. After a routine visit to our family doctor when she was a month old it was discovered that Rylie wasn't gaining enough weight and we were sent to a pediatrician. While at the pediatrician, Rylie had a seizure and we were sent to our local hospital in Windsor, Ontario.
Rylie meds continue to be Levitracetam (Keppra) and topiramate. She also takes 4 mgs of Phenobarbital twice a day. This mix has proved to be excellent for Rylie. We rarely see any seizures. It’s been wonderful as well as we now get more smiles from her, though we do know that she will not make many gains in her development.
When we are able to, Rylie meets with her occupational and physical therapists and she now has a Kid Kart wheelchair. This is great as it gives her the support she needs over a regular stroller. She enjoys going for walks, especially down by the
Rylie has had two episodes of status epilepticus but these were stopped with a dosage adjustment and no further damage was done. Her physical health to date has also been very good. She has not yet had any pneumonias or other significant illnesses and we credit this to both luck and vaccinations against certain types of pneumococcal illnesses that are available here in
It is still hard to keep the tears at bay many days as we continue to grieve the loss of a normal life for Rylie. However, we do try to care for her the best we can and we love her very much . I would like to extend an invitation to anyone who would like to correspond, ask questions, or just to blow off some steam to contact me. I’ve met some wonderful people through Harry and I wish that it wasn’t under these circumstances. I genuinely believe that Harry’s site is raising awareness about MPEI and not only for us parents. It is my sincere hope that by linking up and sharing experiences (including medications) that we can provide important information for doctors as well.
Rylie’s Mom and Dad can still be reached at firstname.lastname@example.org