Thursday, April 12, 2012
If you've read my earlier posts, you will know Wendy started having these episodes where her muscles tighten and she holds her breath. We took her to the emergency room yesterday and after explaining to the neurologist what she was doing he was certain it was Infantile Spasms. IS needs to be treated quickly and aggressively so he was already planning on admitting Wendy and ordering the medication. However, when the EEG was done, it came back normal. This can sometimes happen with IS so he wants a repeat EEG done next week. Personally, I hope it's not IS. IS requires a several day stay in the hospital to begin treatment, followed by 6 weeks of steroid shots daily (which we can do at home) but about 80% of infants who has this, ends up with some form of epilepsy later in life. I want answers, and I'm hoping and praying for good ones!
They wanted to keep Wendy overnight for a 24 hour observation. Zed and I told them that unless someone was going to watch her all night, that it was no use because we can't get a nurse quick enough to see her having a spasm. They suggested I try to catch it on my iPhone. At that point Zed said we were going home and we would follow up with neurology whenever they wanted to see her.
Neurology called today and Wendy has to have a repeat EEG done April 19. In the meantime, I decided to do some research because apparently I am going to have to step up and help the doctors, otherwise, my child will never get a diagnosis. I actually found some pretty valuable information on Infantile Spasms on the American Epilepsy Society's website. It states that if the EEG comes back normal that their are two different types of benign seizures that appear clinically similar. One being benign infantile myoclonus, the other, benign familial infantile convulsions.
Benign infantile myoclonus, also known as, benign non-epileptic infantile spasms begin during early infancy and have the clinical features of flexion spasms. This syndrome differs from IS in the absence of mental and psycho-motor involvement as well as having a normal EEG during wakefulness and sleep. These spasms are characterized by a short (2-4 second) tonic contraction, with no significant changes of the EEG concomitant to the spasm. The series of spasms can occur not only during the day, but also during sleep and immediately after awakening. Wendy mostly has these spasms during and right after sleep. From what I understand, treatment is not needed and the child should grow out of it.
The benign infantile convulsions are similar but have a few different characteristics that Wendy does not have.
Zed and I truly believe Wendy is having seizures, which is why I'm doing my own research. The neurologist said that children sometimes make a "funny face" but this is definitely not a funny face. As a parent, you can tell when something is wrong with your child, and these episodes Wendy is having cannot be normal. I would be thrilled if it is the benign infantile myoclonus. That way Wendy won't have to have any extra medications and she will have a diagnosis so I won't be quite so worried.
Please continue to pray until after her next appointment.