I really appreciate this video from Jason Alexander (of Seinfeld fame) explaining Scleroderma and his family’s experience with it. It is an often times unrecognized and misunderstood disease. My son Noah was most likely born with localized scleroderma; we noticed symptoms we couldn’t explain by the time he was two years old, but it was another two years of constant doctors appointments with different specialist after specialist until someone finally figured it out – and that was only because they did a biopsy on part of the affected area of his face. Building awareness and understanding is important!
It’s been a while since I’ve posted an update on Noah and his battle with Scleroderma. You can find my previous posts/updates here. It’s starting to feel like we go through spells of very little to report … and then get slammed with waves of challenges. At the moment, it feels like a bit of a wave.
We’re currently easing Noah down to a much smaller dose of steroids. This is good as the side effects are frustrating for Noah. He gets teased for being chubby by other kids even though it’s really just a reaction from his boy to the steroids. Unfortunately, over the last few years, the steroids have been the only truly effective response to the Scleroderma.
At the same time, we’re increasing his dosage of Cellcept. The hope is that this will work in holding back the progression of the disease, but it will take time to find out.
Last Friday we spent the day at the hospital getting an MRI for Noah. Because of his age, this meant he had to be knocked out for the duration, so it wasn’t the most enjoyable experience for him – but he’s a trooper! The picture to the right is him playing with my phone and taking selfies after he woke up! Originally, the purpose of the MRI was to get a closer look at what’s happening under the skin at his face and brain, mostly as a precaution to see just how deep the disease is impacting him below the skin, but also to see if there is any connection at all with headaches he’s been complaining of the last few months. But then …
In either a demonstration of great timing … or just the pattern of things surging at the same time, the week of the MRI Noah had an appointment with the dentist where they discovered the tissue in his gums had deteriorated along the path of the Scleroderma to the point of causing one tooth to recede dangerously, as well as impact a couple other teeth as well. No matter what he’s going to have to have oral surgery at some point in the next month or so to correct it. The timing of the MRI was really good because they were able to really take a closer look at that region of his face to see if it’s a coincidence that he has something going on there (highly doubtful), or if it’s the Scleroderma, and if so, examine just how deep the impact is.
On top of everything else, Noah has to start meeting with the plastic surgeon annually so he can track Noah’s growth and the development of his face. As he grows, the scarring around his nose and eyes will look more and more pronounced. By starting the tracking now, it will give the plastic surgeon more to work with once Noah is old enough (probably around 16) .
Pray for Noah! The next couple months will probably be difficult with him; the oral surgery will be a painful experience for him to recover from, and the increased doctor’s visits are not on his list of favorite things to do!
A great video on what life with Scleroderma is like. I think she does a powerful job of describing the disease in an understandable way, what it’s like going to doctors and them not knowing or recognizing it, and the realities of vital drugs with side effects that are brutal.
The drug she mentions, methotrexate, is one that Noah was on for a little over a year. He’s our six year old son who has localized scleroderma on his face; it started showing up when he was three, but doctors were unable to diagnose it until he was four and a half. It’s the preferred treatment (even though not designed for this use), but ended up being too rough on Noah’s liver and body so we had to stop a couple months ago before we could ever get him to the dosage levels he needed.
June is Scleroderma awareness month. Share the video to help build understanding!