Tuesday, August 29, 2006

Medication Meditation

Somebody please tell me that the chemicals I am now inserting into my 6 year old's body are going to do her good! We have gone from the occasional teaspoon of Milk of Magnesia and fiber in her drink everyday to what is becoming a cupboard full of medication.

When Becca was born in 2000 we went home with a list of things to watch for, but nothing that needed immediate treatment. At 3 months she had a hearing aid, at a year old she had a second hearing aid and glasses. At 2 years old, we ditched the glasses and kept both hearing aids. Sometime during preschool we finally stopped using the second non-useful hearing aid. So, at around 4 years old, we were back where we had been at 3 months old as far as apparatuses, or apparati?, and that was a good thing. As far as medication up to that point, we had only tried things to manage the constant constipation. Starting with prune juice, Senekot, Milk of Magnesia and finally fiber.

Then came the spells. Becca started to have these episodes where she would lose her oxygen, in other words, turn blue. She kind of zones out, turns blue and then has a very hard time getting herself back to pink. She breathes, but very shallowly. When she comes back to us, she usually either throws up or dry heaves and is then very sleepy. Detective Diana on the case!

Could it be similar to sleep apnea? The ER Dr. after a visit concerning these episodes did write "Apneic Episodes" on her chart. So, we tried to get an appointment with a sleep clinic to do a sleep study and make sure her breathing wasn't stopping during sleep. After sleep clinics not calling us or our family doctor back, I called in my posse of Moms and got the job done at a sleep clinic not part of the Children's Hospital. It's on the books, we'll be staying overnight at the beginning of September.

Could it be reflux? We have suspected aspiration for a while now with her poor chewing and swallowing techniques. The first ER visit, I was sure she had aspirated and they checked with a chest x-ray that I later found out would not have been able to see food in her lungs that quickly. After waiting all summer, we finally talked to the GI doctor who said that it very well could be that food was coming back up her esophagus and blocking her airway and causing her to turn blue. Good, that's better than the last option I had, in my own mind, considered, but was reluctant to explore...

Could it be seizures? I did not even want to consider this scenario. However, as I went dutifully to the other appointments that we finally had crossed enough days of the calendar to attend, I couldn't push it out of my mind as easily as before. I didn't know a lot about seizures, having never experienced one myself or even seen one happening. I had friends who had, some, unfortunately, with lots of experience. I wrote 2 significant emails. One to parents of kids with CMV from all over this country and a couple of others and one to parents of kids of all kinds of disabilities all over Utah. Sure enough, the CMV parents offered several stories of their children's seizures starting at about Becca's age with extremely similar circumstances. My Utahkids friends were very supportive and then one of them saw Becca have an episode. She, being a veteran of helping seizure victims, thought it was a seizure, too. So, off we went to the Neurologist. We have one that's our favorite. Not only has he studied CMV for years, but he was there when Becca was born and taken to the Children's Hospital and has been our support and a wealth of CMV information ever since. After my description and lots of clarifying questions, he did indeed agree that these episodes are most likely seizures.

So, here I sit with a basket full of medication to squirt into my little girl. Miralax for more intense constipation therapy. Zantac for reflux. And now Trileptol for seizures. It's odd to think that if I hadn't started asking questions and making doctor appointments, she wouldn't have all these chemicals coursing through her body. But then, we'd have more painful bowel movements, possible heartburn and the scariest of all, more blue-lipped episodes. I suppose in a way, 6 and a half years of no intense medication was a good enough break. Now, I'll hitch myself up, whip out my medication syringe and put one foot in front of the other.