Hope

After our visit with the neurologist last week, Sophie being sent home from school again this week, and several conversations with my mom, we decided to self-refer to a Pediatric Pulmonologist.  There are only 12 in the Chicagoland area, and I believe we called the right one at the right time because we got in today.  We knew going in that the visit would be three hours long and Sophie was a rock star.

The process was obviously long, but the abbreviated version is: breathing tests, asthma medicine, rest, repeat of breathing tests, examination and consultation with the nurse practitioner, and then another examination and consultation with the doctor.

The results were that they are a great fit for us!  The doctor said we've been seeing all the right specialists (people he respects and works with) but that it seems no one has been steering the ship--which is exactly how I've been feeling.  Their goal is to communicate with all the doctors we've seen in the past year (sleep specialist, ENT, neurologist, and pediatricians) to talk about what they're assessments were, what they took from their tests, and what the plan of care should be.  They are also going to review the MRI, the Sleep Study results, and have ordered a chest x-ray (in fact they were astounded this had not ever been done).

The medical results were that she definitely has asthma, or as the doctor said, "her lungs really liked the asthma medication".  She had solid improvement in the breathing tests after the medication.  They don't however believe her chronic cough is from the asthma (because it was not improved by the medication), they think she may still be dealing with this sinusitis she was diagnosed with by the sleep specialist and are going to work to cure that.  We're switching asthma meds (again) to Advair which has both the bronciodilator and the steroid in one treatment.

Now we give them a few weeks to review all her tests, communicate with the previous specialists she's seen, get the chest x-ray, and to evaluate how she is on the Advair.  We go back in the end of June.  I really am thrilled to have someone willing to take the lead, and even happier that they are glad to do it.  The doctor actually said, "We are very experienced in working with complicated chronically ill patients".  This is just what we've needed.  Someone who won't look at just one part of this puzzle, but the whole picture and help us to understand it that way as well.

Now, on to Advair and renewed hope that this is a journey we can navigate.

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!