Monday, January 19, 2015

Monday, January 19, 2015

Once again, an update is WAY overdue. Collin had his most recent visit with his endocrinologist in November. In the six months since his previous visit with Dr. D'Arcangelo, he has gained 7.5 lbs and 1.11 inches, so he's growing, slowly but surely. Despite being born an inch longer than Neya was at birth, he is now quite a bit shorter than she was at this age, thanks to chemo and radiation. The good news is that currently his growth hormone levels are within normal range, so we don't yet need to think about starting daily growth hormone injections. Collin's most recent MRI was on December 5, and thankfully it was clear. We're now scheduling them every four months instead of every three, so his next one will be in April. During his check-up with Dr. Comito in December, she noticed lordosis in his lower spine, which means the curve of his lower back is more exaggerated. This could be caused by the radiation to his spine, and we will continue to monitor it. On January 5th, Collin had a visit with the gastroenterologist. His reflux has been pretty well controlled by the Prevacid and Carafate over the last three months, so Dr. Qureshi is having him continue the medications for another three months to give his esophagus enough time to heal. If Collin is still doing well the next time he sees Dr. Qureshi, we will talk about slowly weaning the medication.

With another clear MRI on file, we finally decided it was time to take out the mediport in Collin's chest. Due to an increased risk of infection with a central line, illness accompanied by a fever of 101 meant a trip to the ER for blood cultures to make sure the fever wasn't being caused by an infection in the port. Now that Collin is in school and exposed to bugs that often cause fevers, we've had to make three of these trips in four months. Since he doesn't need regular bloodwork, the port wasn't being used much, so it was time to let it go. The surgery to remove it was January 9th. We were at the hospital for six hours that morning, and everything went very smoothly. After Collin woke up from anesthesia, we had lunch and then came home. Less than 30 minutes after getting home though, Collin threw up, and began shaking. In ten minutes, his fever climbed to 101.7, so we quickly headed back to the hospital to make sure he hadn't gotten an infection. An IV was placed in his foot, bloodwork was done, and a chest X-ray was taken to rule out atelectasis (collapsed lung), which can be a complication from surgery. Everything checked out fine, so after five hours in the ER, we returned home once again. Thankfully, Collin has been fine ever since.

In 2012, before starting his radiation treatments, Collin had a baseline neuropsychological evaluation at MD Anderson, and in 2013 he had a second neuropsych eval done there as well. A neuropsych evaluation is a series of tests that give an overall picture of how the brain is working, specifically in the areas of reasoning, concentration, visual-spacial, problem solving, counting, language skills, and memory. Children who've had radiation to their brain typically have this evaluation done yearly, to monitor the effects the radiation has on their brain as they continue to grow and help determine what kind of assistance they need in school to help them learn. Collin's third neuropsych eval was done on December 30 by a well respected clinical psychologist in Hershey. He came out of this evaluation with a new diagnosis: mild autism.

Now, to say I was surprised by this diagnosis would be putting it mildly. There are so many people who know plenty about autism and have worked closely with Collin over the last six years, from his pediatrician, his inpatient and outpatient therapists at Hershey and the IU, to the psychologist at MD Anderson who tested him twice; but not one of them have ever mentioned a suspicion of autism. I'm not quite sure I agree with the diagnosis; personally I think every single item on the diagnostic checklist can be explained by his treatment, or conditions he was in during treatment. He was isolated from other kids his age from the time he was diagnosed at 16 months old, until starting in the speech/language group at the IU in 2013. After being diagnosed with the brain tumor, he spent most of the following seven months in the hospital. Then, after his stem cell rescue, he had no immune system, so we still had to keep him away from most people. After that, our time was spent going to multiple appointments every week, such as clinic, ST, OT, and PT appointments. He never had the opportunity to go to playdates, storytime at the library, preschool, etc. like Neya did at that age. Since he's never had a chance to spend much time around peers, he's way more comfortable with and better at interacting with adults. He has social anxiety around peers and larger groups, because he doesn't have a lot of experience around them. He has told me he doesn't want to make a mistake when he asks classmates to play with him in school; he's afraid they won't like him. He desperately wants to fit in though, and doesn't like feeling different. He's sensitive to loud noises, which I was told was due to his high frequency hearing loss. He wasn't speaking more than one or two words before he was diagnosed with the brain tumor at 16 months, but I had been told this was because of the location of his tumor. He doesn't always make eye contact with people he doesn't know well, but he's more reserved/shy around new people because he's unsure of how to interact with them. He was always cuddly and made eye contact as in infant though. He likes to imitate the tv shows he watches, like The Wiggles, but with no friends his age and very limited experience in normal social situations, is it really all that surprising that he fantasizes about characters who are like friends to him? I could go on, but you get the idea.

So where does this leave Collin? While I question whether he's truly autistic, the diagnosis doesn't change anything about him. What it may change however, is what services he qualifies for when it comes to his education. Dr. Mayes made a referral for wrap-around services, which will get him a one-on-one therapeutic support staff for school. If we can find a TSS who is good, and consistent, it could be a very good thing for Collin. He deserves the best chance at becoming an independent and productive member of society, and if this will help him reach his full potential, then I can accept it. It isn't something I would have chosen for him, but compared to the possible alternative... a child has to survive cancer first to deal with everything that comes after it, so we'll learn to handle it and keep moving forward.