So everything got changed up on our six year old, Noah last week! Sheesh …
You can read some of my previous posts about Noah and his health challenges (Scleroderma and Ptosis) by clicking here.
But back to the point. Basically, we got called into the doctor’s office because Noah’s latest round of blood work came back bad – we were told to stop giving him the medicine and come in for a new plan. For the last year and a half or so Noah has been on one drug; originally orally, but then through weekly injections, to try and stop the spread of the Scleroderma. At first it worked. Then it stopped working. And then it became toxic to his body. For the last several weeks he’s been nauseous and on the verge of throwing up, and then the blood work came back revealing the medicine was at damaging levels in his liver. This was frustrating because he was on less than a third of the dose the doctor eventually wanted to get him to, and with the Scleroderma noticeably spreading and damaging both his skin and the tissue underneath, we’re all very concerned.
So now that the preferred treatment is no longer effective (and I believe it’s the only one they’ve actually completed a successful trial on), we’re on to a new drug. Noah was happy because other than the monthly blood work, this one is oral so no more home injections. Unfortunately, it tastes awful, so it took him a few days to get used to the twice a day dose. He’s also on a steroid for the next six weeks to jump start the drug, so at the moment he’s getting various medicines three times a day (we can’t do them at the same time because of the different food/no food stipulations), which has him thinking about it a lot more than when he was on a once a week injection.
As a parent, the last six months have been disappointing to say the least. It seems like each visit has been bad news in some way. The disease continues to spread. We can’t give him enough medicine. The medicine goes from being helpful to toxic. We’re taking aggressive steps with potentially bad side effects. And all this is just for the hope of halting the spread of the disease. There is no cure. And he won’t heal where it has already done damage – the only prospect there is plastic surgery when he’s an adult. Even the medicines we try aren’t actually designed for Scleroderma – for the most part they are actually intended for organ transplant recipients to help their bodies not reject the new organ. They’ve found by significantly upping the doses in patients like Noah they can slow down or stop the spread of the localized Scleroderma. It’s even strange going to the pharmacy; because these drugs are so rarely used, they always have to special order for us. It’s disconcerting to be recognized at all these places (the pharmacy, the blood work lab, the doctor’s office). We’re there a little too frequently!
All that to say, keep praying for our son. We’re only a week into this new treatment plan and we’re hoping when we return to the doctor in a month that we’ll hear something good.
8 thoughts on “Changing it up with Noah”
Payers are coming your way – I have a good feeling this new medicine will work! Thinking of you all and that little guy!
Thanks so much Krista! It means a lot 🙂 @Krista Connelly
Dont know if this goodnews or bad news but we went through much the same thing with Donnas type of scleroderma Without knowing any thing about the team treating Noah we turned thecorner once we were with a doctor who trrateed a lot of patients for that disease Hope things turn around for you
One of the blessings for us is that we live literally a few miles from one of the best children's hospitals in the world. Our doctor does see a lot of children for scleroderma – he was genuinely surprised to find out we live so close, he's used to people coming from great distances. Some of the other specialists are in NJ about an hour from us that we go to when we need specialized scans. So on that count we feel like God really knew what He was doing when He placed us in this church and in this community.
Hey Matthew and Heather and all 4 boys. Wow it was good to be able to check in here through Ruth. My goodness what a trial you're going through and dear little Noah who may not be so little anymore….read your post…we will pray for the doctor's expertise in treating Noah. SO good to know you're near the Children's Hospital down there…has to be somewhat comforting.
We too are walking through more medical issues…never ends and it's getting very tiring but….we shall rise to each new day that the Lord gives us and carryon.
Stay the course and have fun with your Dropbox or whatever that is??? ha ha
Bill and Sue Burge
Perfect. We went through a bad patch with a "specialist" who had actually never treated the disease before. He had been the closest available after the initial diagnosis. I'll give him this, when it became apparent he couldn't help us he referred us to the University of Pittsburgh where they are doing some great research. I'll keep you all in my prayers.@Matthew McNutt
Matthew and Heather ~ Just read this. I am sorry for this on going struggle! I can only imagine the frustration. Prayers for healing, prayers for peace. So appreciative of the ministry you both do while taking good care of your family.
Jay, I think for us it has been a learning process of pushing for the doctors, tests and treatments we want. I've always been easy going so it goes against how I'm wired. It's been good, though, because we're seeing people that we have confidence that they know what they're talking about, even if it isn't always good news. How far is Pittsburgh from you???
Thanks, Jenn. We appreciate the prayers!