First, I'm sorry this has happened to Hayden. You are in the right place for support and information!
Carl (10) my son with Duchenne does not have Type 1. But my daughter Kate (12) does have Type 1. Not sure if there's any genetic connection, but I thought I'd respond. God bless you!
Kate was seven when she was diagnosed with Type 1, and Carl was six with the DMD. We learned quickly that the world is broken and every day precious. We'll pray for you and Hayden.
Carl is doing fine. Two megadoses of Prednisone per week, and we give him Idebenone (900mg per day), which we think has helped him tremendously. He uses a manual wheelchair for any long distances and needs help getting up into the van, but he can still negotiate the three little stairs to our house. Some learning delays—he has a brilliant imagination, and is a master of LEGOs, but it takes longer for him to process language, so reading has come slower. Steroid days can be a challenge emotionally, but he is such a sweet and caring boy. We are part of a classical homeschooling group that makes use of a lot of memorization through repetition and song at the "grammar stage," and this has helped him a great deal. It's all in there, but it just sometimes takes a while to come out. A big achievement just last month was his recital of "Dad's favorite poem," Frost's "Stopping by Woods on a Snowy Evening." It took an extra week to be able to remember the words when it was weekly presentation time, but he was so proud, and so were we! We are particularly sensitive to doing all we can to cultivate his mind so that he can find joy in the years to come when he won't be able to get around as much, and this is a challenge because the lack of dystrophin affects the brain as well as the skeletal muscles. But the rewards are very much worth the extra effort!
With our first upcoming appointment next week Ive started to get the anxiety and very emotional feeling I got when they first told me he could possibly have muscular dystrophy. Reading your comment made me tear up and its like I cant control the emotions sometimes. The past few weeks have been so much better until our appointment was confirmed I guess it made it seem more real again. As I am typing this I am flooded with those emotions again and crying.
We don't know much except he has a nonsense mutation. He is doing well as far as mobility at the moment. He climbs stairs with no problems no assistance is needed yet and they don't make him tired. He goes to school here in a public very small community school. He is in kindergarten and he has some issues but for the most part does well. He play well on the playground he is just slower then everyone, but he doesn't seem to care right now. Ive always just assumed most of his slowness and delay in speech was type 1 related because during all the crucial learning periods he was sick with type 1 and we didn't know. his A1C was over 12% he was miserable and I took him to the pedi multiple times and got brushed off everytime. But anyway that's a whole other story. Do you have any idea the affects steroids play with insulin? I ve heard it can cause insulin resistence, I guess the doctors will address all this next week. Thanks for listening.
I'm so sorry, Amelia. A thousand knives to the heart, it feels like. We will all hope and pray together for the best possible news at the appointment. If you're like our family, as you wait for official answers you've asked Google many questions, and it's almost impossible to deal with all of the data, to sift through it and know what to think next. Knowing how difficult Type 1 is to deal with in another child, I can't imagine dealing with both in one! We know the frustration of dealing with doctors who aren't listening, and we've switched caregivers and drive further to get better care for Kate's diabetes. There are DMD and BMD physicians out there who know their stuff and will provide fantastic care, and you'll find them.
I'm no MD, but I do know that you're right, steroids affect blood glucose, usually raising bg levels. It's why sick days play havoc with their sugars, as our bodies naturally produce more cortisol during illness--similarly during puberty, when lots of human growth hormone begins percolating in their systems, insulin needs change. Doctors who know what they're doing can adjust for this, however! Also, Deflazacort may be a better option (than Prednisone), as some studies show that it does less to raise bg levels. It's a unique difficulty to deal with, but there are answers.
You need to be able to share your tears and frustration--and this is one good place to do that. This probably goes without saying, and I realize it's unsolicited, but I know I needed to hear this when everything was fresh: You are free to ignore and tune out any voices who are discouraging or unhelpful to you right now. Surround yourself with those who will listen and encourage and provide real help. The parents here are warriors, and you are one too. You are fighting for your son, and you are called and equipped for such a time as this, to be Hayden's warrior. There are blessings to be found in the midst of this deep darkness, including moments of profound tenderness and love that you have with your son and family that others likely won't have. And there are many and diverse treatments being developed right now, which all of us follow and lend our support to--a vibrant and active community galvanized by love for our sons. It's hard to believe it now, when the pain feels crippling, but that love is more powerful than fear of whatever lies ahead. Your pain is unique, yet you are not alone!
Thank you for such kind words.