GI Doctor Visit
This week, we met with Bryce's current GI doc, Dr. Noel. After 49 days, Dr. Noel finally explained the results of the gastric reflux test where Bryce had a probe in his esophagus for 24 hours, measuring reflux episodes. The report reads "75% of the perceived pain episodes are associated with movement of fluid/food through the esophagus and that most of that is antegrade movement (swallowing). This finding may support a functional esophagitis as a possible contributing factor to his pain. " Basically, Bryce is having pain associated with swallowing for some reason.
How do we treat functional esophagitis you may ask? In teens and adults, they are using medicines such as tricyclics and selective serotonin reuptake inhibitors in very low doses, to relieve esophageal pain. Dr. Noel said that it works great. But Bryce is 16 months old. Dr. Noel found some studies where kids were 5 years old and took these medicines but absolutely no literature giving children under 3 these medicines. First, most children this young can not explain their symptoms and second, the impedance probe that we did is new among children and adults. Hence the reason, there are no trials of these medicines with children as young as Bryce.
It is great that we at least know one thing contributing to Bryce's discomfort but the question still remained, how to treat his functional esophagitis? Dr. Noel talked to colleagues and came up with a drug named Baclofen that is mostly used in cerebral palsy children to treat muscle spasms. I found one study that has tested Baclofen on 30 children with reflux and it worked to reduce the amount of reflux episodes. Initially, I was really worried about the side effects. But Dr. Noel thinks the 2 ml that he is getting a day won't be enough to have side effects. The study I read had very little side effects also.
Finally, yesterday morning, we decided to start the Baclofen. Believe it or not, yesterday, he took a 5-hour nap!! He still woke up every 45 minutes but he didn't thrash around nearly as much and was able to push through the reflux and stay asleep with the assistance of a bottle. This has NEVER happened before. Last night, he still woke up frequently but things weren't as intense--not as much crying and he went back to sleep quicker. This afternoon, he took a 3 hour and 20 minute nap (again, with some assistance but still. . . .3 hours!!!).
I certainly don't think Baclofen is THE miracle but if it takes the edge off things for Bryce and he is able to sleep a little more, all of our lives would be much improved. Say a prayer for us. We still have to make sure he isn't intolerant to this medicine. We'll only know that after about a week.
Nutritionist
On Tuesday, I met with the behavioral psychologist and nutritionist to map out a plan to get Bryce eating some solids. It was a new nutritionist and she was smart and resourceful! She took into account his eosinophils and fructose malabsorption issues. Next foods to try are gluten-free oats and then potatoes. Of course, we have to introduce one thing to Bryce at a time to make sure he isn't intolerant and right now, it's the new medicine so the oats still have to wait.
Cincinnati Children's Update
We are still pursuing getting Bryce to the gut experts at Cinci. The intake nurse from the Eosinophilic Clinic contacted me about 10 days ago and went over Bryce's entire medical history. The intake nurse also had his medical records and biopsy slides from his 4 scopes done. Since then, I have learned through our case manager, that Cinci wants authorization from our insurance to do an endoscopy, colonoscopy, allergy evaluation, skin and patch testing and dietary evaluation. Once Cinci has the insurance authorization, we'll be scheduled for a week-long visit at Cinci to complete all of the tests. Right now, sounds like it may be October before we can get into Cinci. I can't wait for an actual date!
I don't normally take pictures of Bryce when he is upset. But I couldn't resist documenting the discomfort he was in the other night. Let's hope and pray that we are on our way to finding him relief!
1 comment:
Well sounds like a pretty productive week- and you finally heard from Cinci which is great! Though I hear ya on the waiting til October..((sigh))
Good for you for documenting the pain Bryce is experiencing in the photo. It is so hard to see. But, one day when Bryce is better and this is ALL behind you, and it will be, then you can look back on this photo and remember how far you have come.
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