One Step Forward, Two Steps Back

It's been one heck of a week since we started Bryce on the new medicine, Baclofen, to help his functional esophagitis. We started it last Saturday (Jun 14) and for two days he slept better and appeared to be in a lot less pain. It is has been the only thing we've EVER tried that has actually helped Bryce (there's been many medicine and formula changes over the past year). Andy and I were sooo hopeful.

Then Monday morning came. He woke up in pain and had a rash all over his body. Of course, I assumed it was the Baclofen. I couldn't get a hold of his GI doc but his pediatrician squeezed Bryce in Monday afternoon. Dr. Simone said the rash looked more like a viral infection then an allergic reaction but wasn't positive. So, we decided to keep Bryce on the Baclofen.

By Friday morning, the rash was still there and he had vomited three separate times. He was miserable. After speaking to his pediatrician, she said we could always take him off the medicine and try it again later. If the rash appeared later, then we would know for sure it was the medicine.

However, Friday night Bryce was in extreme pain, crying almost constantly. We knew the Baclofen would at least take the edge off. I had Reserves over the weekend and we needed some relief. So, back on the Baclofen he went Friday night. The redness of the rash had gone down but the bumps and rough skin remained.

During the Reserve weekend, we kept Bryce on the medicine and somehow we all survived despite very little sleep.

By Sunday afternoon, it became obvious that Bryce and the new medicine were not agreeing. After a week of the medicine, he was having his normal intolerant signs of irritability, very little sleep and diarrhea. We knew we had to take him off the Baclofen.

On Monday (Jun 23), we took him off the medicine again. By Monday night, he was cranky and not sleeping despite trying all of our tricks including a car ride, walking him in his carrier, going for a walk in the neighborhood - nothing. Finally at midnight, he fell asleep for 45 minutes. When he woke up, he woke up SCREAMING. Bryce was in more pain then he has been in his entire 16-month life. There was absolutely nothing Andy or I could do to calm him. We were scared. He was shaking, screaming and it looked like he was going to go into respiratory distress if he didn't calm down soon. We knew the Baclofen might help. Within 20 minutes of giving him the medicine, he calmed down and finally fell asleep.

We believe that Bryce is intolerant of the sugar in the oral suspension that the Baclofen comes in for kids. He has a history of not being able to tolerant things with a high fructose level including pears, apples and all oral medicines. Today, I finally got a hold of his GI doc and he prescribed us a tablet of Baclofen that we'll be able to crush and give Bryce in some baby-food carrots.

Tonight, we started the tablet form of the Baclofen and you could see he felt better within a few hours. By 8PM, Bryce was asleep. Andy and I were actually able to eat dinner together. We hope and pray that Bryce is able to tolerate the tablet-form of Baclofen. As always, only time will tell.

One step forward, two steps back!