That afternoon I had left not an extra moment to spare in order to make it from picking up Levi at school to his first swim lesson across town. I signed him up for a crash course at the beginning of the summer. When we signed on with this company there were pages of instructions, directions, etc. all of which went over the fact that if you were late, too bad! So, with ten minutes to get there and Levi not even dressed yet, the phone rang. I quickly pulled off the road and into the Vallarta parking lot. I whipped out my paper and pen. I tried as hard as I could to listen to the doctor over the screams of the two toddlers vying for attention from the back seat. There may have been a few bribes thrown in and a pacifier and blanket tossed in the back seat. Bottom line was that he had found that she had a severe arrhythmia of her stomach. Her stomach made no contractions of its own without food. A typical stomach should contract roughly three times a minute in order to move regular secretions, stomach juices, etc. When food entered the stomach there were slight and weak contractions which is why food does get out, yet not effectively and efficiently. They were able to narrow the problem down to being neurological (the nerves not firing properly as opposed to the muscle just not working).
From here he wanted to prescribe two different medications. Both with gnarly side effects. Both I had already researched and was already scared to give her. He asked me to call in the morning to make an appointment to come in to meet with our regular doctor to go over everything. We spent that night panicking, freaking out, etc. We researched, talked to my cousin (a pediatrician), my stepdad, etc. Bottom line is that one of the drugs is an antibiotic (Erythromycin.) We would be giving her two doses a day, potentially for the rest of her life. It would force stomach contractions which is the good news. The down side is that by giving her an antibiotic it can make her more prone to superbugs such as c. dificil or make the efficacy of the antibiotics less so when they are actually needed down the road for another illness. The other drug, Reglan (another drug to increase motility and promote contractions) has a black box warning from the FDA. It can cause uncontrollable muscle movements and ticks, what appears to be Parkinson's like symptoms. It occurs in a large percentage of people given the drug and oftentimes is irreversible.
I called the next morning to make an appointment. They made one for us on the next day he was in the office...just my luck it was smack in the middle of our last field trip of the year. I went home that night and with the help of my mom, stepdad and Judson we typed a list of questions three pages long (no joke!) We went in prepared!!!!
On the day of the appointment we saw him and it quickly became apparent that Charlie's condition was a bit beyond his scope. He was unaware that we had even gone through with the test, had not even seen the results, yet had known that we had been prescribed these meds. Suddenly many of my questions became irrelevant. We felt as though this group was no longer able to handle her condition. We had been told all along that her condition was extremely rare, and that there are just not many cases like it, therefore not much research or others to go off of. They were learning as we went. It was at this point that we made the decision to move on and seek out a second opinion with a doctor who had experience with her diagnoses regardless of where that took us. In the meantime, we were deciding to hold off on the meds until we could speak to someone who could explain our options in a way that could put us at ease.
We left the office and immediately called Dr. M. He spoke with me over the phone and thought that it would be best for all of us to come in so we could sit down and go over it all together as a starting point. He stayed late after his last patient one day that week so that Judson, my mom and I could sit down with him. We met with him for over an hour. He again explained that in all of his years of practice he had never seen anything like this. He went over the medications and put us at ease. We agreed to start Charlie on the antibiotic but to hold off on the Reglan in order to see if we could get one to work before putting her on the other.
At the forefront of the next concern was that she was still not growing in height or weight and it was time to delve into that deeper. For the first time it was suggested that this may be a separate issue and that it was time to look further into the cause. Could it be a pituitary tumor? Growth hormone issue, etc? He suggested we make an immediate appointment with a pediatric endocrinologist as we didn't want to mess around with this any longer potentially risking stunted growth.
We left his office feeling much better. Called the pharmacy to fill the prescription for the Erythromycin and called the endocrinologist to make an appointment. At that point we began calling around looking for the most specialized pediatric motility clinics in the country to find that there are really only a handful...seriously about three. After researching for hours on end we found that the best clinic and doctors are located in Columbus, Ohio. I called, and they said it would be a few weeks to get in. We were prepared to travel when suddenly I found that one of their doctors had just left to come to Children's Hospital to start a motility clinic in LA. Could we have just gotten that lucky????? Not only that, but her specialty is in gastroparesis. We called and made an appointment. It was going to be a wait to get in but at least we were on the books. Baby steps but it was steps in the right direction!
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