Emma’s Grace

The weekend before Christmas all the way until New Years was a really rough time for us. Here is the first part of what happened. I will continue in a couple of days.

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Friday evening (December 21), Emma had been having a fever for 3 days and each time the fever came back, she would seize. After giving her a dose of Motrin in the early afternoon and 1.5 hours later the fever was back and she started seizing. Right after she started, I packed my things and took Emma to the hospital. After stopping her immediate seizures, they decided to keep her overnight for observation and so the neurology department could take a look at her in the morning.

In the morning, after talking with neuro, they scheduled another EEG and a lumbar puncture. Topamax was also added to her list of anti-seizure drugs. Topamax comes in a pill or in sprinkles. Emma takes the sprinkles in a small bit of baby food to make it easy for us. The sprinkles don’t dissolve well in water, and proved to be a bit difficult.

We did the EEG. Emma was bundled up and the test was run. The EEG tech didn’t say anything so I didn’t really know if anything had happened. Emma was so smooshed together that she was asleep and could give no indication of seizure activity.

Sunday we waited to see the EEG results and to see how Emma did on the Topamax. She still had some seizure activity Saturday evening and neuro wanted her to be seizure free for 24 hours before they would let us go. Emma seized some more Sunday evening so I wasn’t sure if they would send us home on Monday or not. We were really hoping to be home for when Santa would be home.

Monday morning (Christmas Eve), the pediatricians came by and ran through a summary of what Emma had been doing. In the run down, it was mentioned that the EEG results were in and indicated Infantile Spasms (IS). I waited for neuro to show up to give us a more concrete diagnosis, but they never came. Jon and Matthew came to visit us at the hospital. Before running off to get some dinner, we asked the nurse about contacting neuro again. One of the pediatricians came down and informed us that we were waiting on a new drug to come in to give to Emma. So we were to stay another night in the hospital.

Jon did a little bit of research on IS and filled me in on the details. While IS has a pretty simple name, it’s results aren’t so simple. The spasms themselves aren’t so bad. They are characterized by the arms going out and the body jack-knifing. With certain medications, the seizures are controllable. The future statistics are what keep us wondering. It seems that the symptoms of IS clear up by age 5. There is a 50% chance that Emma would have some sort of mental retardation, possibly very severe. There is another 50% chance that Emma would have Epilepsy growing up. Only about 15% of cases manage to come through it without any side effects.

It seems that the best outcomes of IS comes from those cases where it is very hard to diagnose and/or have abnormal symptoms. We aren’t sure if Emma’s was hard to diagnose, but she did have abnormal symptoms. She has never jack-knifed that we’ve seen. Different types of seizures can also arrise. We are hoping that with the lack of the basic seizure and only signs of other seizures that she falls into the abnormal symptoms.

There are only a few treatments for IS. ACTH is one. ACTH is a hormone injection with some bad side effects. Vigabitrin is another. Vigabitrin is not approved in the USA. We would have to obtain this drug from Canada. It would also not be covered under the insurance. A ketogenic diet is another treatment for IS. In Emma’s case, she would have to take a special formula instead of breastmilk.

Finally, on Tuesday (Christmas Day), neuro came by and explained Emma’s diagnosis to me a little more. I gave the OK to start her on Vigabatrin. I received a prescription for that. We were released that afternoon.

That evening, after putting Emma down for a nap, I found her awake and she had thrown up. I didn’t think much of it since she had been a little congested in the hospital. Later that evening, after giving her the meds and feeding her a bit, she threw up on me a few more times. I called the hospital and they advised us to give her sips of apple juice and skip the evening dose of meds. If she continued in the morning and couldn’t take her meds, then I would have to bring her back to the ER. Thankfully she was feeling better and kept everything down.

More to come…