This week our hospital visits culminated in a meeting at a big children’s hospital in Holland. The meeting, called a ‘Koala meeting’ is set up so your child gets examined by a group of doctors, then they go away for 20 minutes and deliberate and then they come back with a diagnosis or a new plan for testing. I was imagining the team from the TV show ‘House’ sitting in a meeting room with a flip chart of my sons symptoms and then systematically crossing off each condition. I was pretty nervous to attend the meeting but I love all things medical so I was also excited to see what would happen. (I so chose the wrong profession!)
My son is 3 and a half months old and had trouble growing in the first month. He went back to hospital for testing and fattening up for 2 weeks and since then we go back and forth to the hospital every week for testing and check ups. I have subsequently become educated on Tracheomalacia and reasons for Failure to Thrive in infants and I spend a lot of time on the internet. I had many unanswered questions and so the opportunity to meet with all the doctors at once was amazing.
We were taken to a large examination room where Thomas was measured and weighed. Then the doctors filed in. The neurologist, the paediatrician, the metabolist and the geneticist. They all took turns examining Thomas and then sat down to go through his medical history with me. It was kind of like a job interview, us on one side of the table and 4 people asking questions on the other side! It took about 20 minutes to sum up his short life and then they excused themselves to deliberate some more.
As they left I was going over everything in my mind and hoped I had given them all the information they needed to make connections and to come up with something. This week my doctor called and said I had very low B12 levels. My son also had low B12 at the start. Therefore I wondered if this could have been a cause of the slow growth at the start? shouldn’t the prenatal vitamins cover B12? I mentioned the slight tongue tie and possible silent reflux and aspiration etc…. I’m pretty sure I had covered everything.
They came back in with the verdict.. more testing. Thomas will get a MRI and both me and my husband will have a full panel of genetic testing done to see if something comes up. This will take more than 6 months and in the mean time we just wait and see what happens. I kind of expected this to be the verdict as we have ruled out most of the obvious illnesses by testing at our local hospital. I suspect (and hope) that the Tracheomalacia is the cause of the Failure to Thrive and the developmental delay and he should just grow out of it by 2 years.
I don’t know if it is a good thing or not, but as I was talking about Thomas’ medical history one of the doctors asked what my medical background was?! ha ha. My Husband laughed and said I spend too much time on the net. OK Fair point, but I’m a SAHM, I’m anxious and worried about my son, and I’m an accountant. This is clearly a recipe for way too much time researching possible medical problems. If I sound like a doctor, kudos to me, I’ll take it 🙂