Long Overdue

Over the past few month, Sophie has obtained a new diagnosis, Ashtma.  At first it was occasional and was reflected in her difficulty getting over colds--she would have a lingering cough for months.  Lately, it has become much more severe (hers along with many other children this spring).  At first we tried Claritin, then Singulair, but in the end neither of those seemed to make a difference.  Next came an Albuterol inhaler which worked, but only for an hour or two.  Finally, another pediatrician in the practice saw her a few weeks ago and decided to take another route: a nebulizer, steroid inhaler, and antibiotics because she had bronchitis .  The albuterol nebulizer made her tremor so after a week of that we moved to xopenex (levalbuteral)--which has fewer side effects.  The three together beat her bronchitis, but while waging the asthma war we notied something else, when the asthma left her exhausted we saw a pattern of break-through seizures.

Luckily we had an appointment with the neurologist already on the calendar and figured we'd handle it today.   What I learned today is that epilepsy and asthma are a very rough duo.  They both come on strongest at night, they both exhaust you, and each makes treating the other more difficult   In essence we're stuck in a cycle in which when the asthma flares she becomes exhausted then from lack of oxygen and lack of sleep and both of those cause seizures.  The seizures then cause a lack of restful sleep as well, which leads to a tiny little five year old body unable to muster the strength to get over the asthma symptoms.

Our pediatric neurologist is great and let me take the lead on what we want to do.  He was willing to put her on Keppra to try to eliminate the seizures, but I strongly feel she is on ENOUGH drugs as it is.  I told him that I don't want her to be drugged out and I don't want her to lose her spark.  He agreed that since we're only seeing the seizures in the evening and since that's when we're in a "controlled environment" rather than at school, he'll give us time to try to get the asthma under control before adjusting anything.  He stressed that seizures aren't bad for the brain, but that ideally we would see NO seizures, especially at her level of medication.  So, our plan for now is to spend the next three months trying to control her asthma and at that point we'll do another EEG to see if there are more seizures than we're seeing or if it truly is just the exhaustion causing them.  If the EEG demonstrates that she is still having seizures we'll add Keppra since she's already maxed out on Depakote.

The good news is, she's finishing up Kindergarten strong.  She may not have fully caught up to her peers yet due to the epilepsy, but that's pretty common for the diagnosis not to mention July birthdays.  I'm really happy with how she is doing and all that she's learned.  I'm hoping that by the time first grade starts, we'll have all of this in the past and we'll be moving forward with balanced medications and no more seizures!