One of the most difficult things we have had to deal with in regards to all of the issues Luca has is trusting our medical team. It’s sad, but true. While there are many pediatric doctors out there, not all of them are wonderful. Early on, Luca developed a team of specialists: Genetics, urology, neurology, plastics, audiology and ophthalmology. With a team so large, it’s important that you trust them all and that they are able share their communications amongst each other where applicable (for example, neurology needed to sign off on any plastics procedures that required anesthesia).
Most of our experiences have been great so far, but we’ve had our rough patches. Early on, we ENT in between all of these other specialists to ensure there were no issues with reflux since Luca had some spit up issues when he was a few months old. Mind you, we will out tons of paperwork before appointments with new specialists so they are very well aware of Luca’s medical history. This particular doctor tried to push all different types of testing on us that we didn’t really feel was necessary and seemed to care more about all other issues than the one we were visiting for. Mind you, a few spit ups is normal for any baby, but we were extra cautious with Luca. It was very apparent right away that this man was trying to take advantage of all of Luca’s issues and wanted to capitalize on all that he could through testing that as an average person, we knew wasn’t necessary. Neither my husband or myself had expected this and were hesitant since it all seemed really over the top and almost like this doctor wanted to do all the tests he could since insurance would pay in Luca’s case. The doctor knew we were hesitating and flatly told us “if you don’t do these tests, there’s a chance Luca can get pneumonia and could die”. What? Really? A little reflux is going to lead to my son’s death out of all things? Also, what kind of doctor says this to new parents, especially new parts with a child with some serious issues? He was trying to scare us into doing what he felt was necessary and that is just not right. Deep down, I knew right away that what he saw in Luca were dollar signs. His demeanor wasn’t a caring one as his other specialists had, it was harsh and he was extremely condescending. Since Luca was a baby with genetic disorder, odds were pretty good that the insurance would cover any testing the doctors needed and this guy knew it. Seriously, it was just a few spit ups and a precautionary visit since Luca is well…Luca. If the problem were any more severe, I would have totally been on board with trying to help Luca in any way I could, but this just didn’t feel right. I left initially feeling like a horrible parent since the doctor told me I was risking my son’s life, but then it all sank it slowly on my drive home. I then became angry that he had made me feel that way. I followed up with our pediatrician, who agreed that it all sounded a little over the top and he reassured me Luca wasn’t going to dying from reflux, which I already knew. I would like to give the doctor the benefit of the doubt that he was dealing with a child with a rare disorder and would just being extra cautious to avoid missing anything, but this is 100% not the way it came across and I don’t believe that was his intention. Needless to say, we never saw him again and have not followed up on any of those issues since. The reflux resolved itself and probably never required a doctor’s visit in the first place.
The second time it happened was equally as bad. For Greg’s 40th birthday, I decided to fly the three of us to Arizona for a golf weekend. I figured Greg could golf during the day and Luca and I could hang by the pool. It was Luca’s first time on an airplane and the first day was great! The second day, Luca seemed to be quite agitated and not at all himself. I thought maybe he was just tired from traveling and wanted to let him rest. He barely slept that night and the next day, broke out into a rash on his whole torso area. When Greg go back from golfing, we decided to take him to urgent care to see if this was a possible allergic reaction to something. Luca had just come off the ACTH from his Infantile Spasms and was doing well otherwise. We listed all of his medical conditions on the intake form -BIG mistake. Since Luca’s condition is so rare and many don’t know much about it, the fear of the the unknown definitely kicked in for these doctors. They immediately wanted to have him taken to the children’s hospital. Well, we didn’t think it was that serious since it just presented as an allergic reaction and a rash – no other issues. We thought it was best to get home to our doctors and paid a fortune for last minute tickets. We went straight from the airport to the pediatrician and low and behold, Luca had an enterovirus – something ALL kids get. The doctors at the urgent care couldn’t see past his diagnosis to actually treat the symptoms. Fair enough, they just didn’t know. So now, we do not list his specific condition on medical forms for things not pertaining to PT 13 – instead we just list Autism and explain that there is a genetic disorder to avoid freaking anyone else. Lesson learned!