I am overwhelmed with all the information out there for DMD! There are some very encouraging things going on in the DMD community. I have signed up at the MDA website and everyone is very welcoming and understanding.
There are some specific prayer requests that we have right now.
#1 I have read about several vitamins and supplements that could be beneficial to Ben. These include CoQ10, Vitamin E, Selenium, as well as a few others. There have not been high dollar medical studies to prove these though. I want to be able to give him the very best possible chance at living a full life. Please pray for our wisdom in decided which vitamins/supplements work best for his situation.
#2 That we are able to obtain his new medicine without problems. Many doctors prescribe Prednisone (long term) for MD and there are MANY side effects. There is another steroid that works just as well, Deflazacort, without many of the side effects, but it is not FDA approved and therefore has to be purchased in Canada, Mexico, or the UK. We will be getting ours in the UK. Pray that our first order goes through ok and that we get it in time (his doctor wants him to have been on it for at least 2 weeks before our first MDA clinic appointment (February 10).
All in all, we are doing okay. We have pretty much have had a month preparing for the official news. I want to be positive and stay as upbeat as possible. I think this will benefit us and all of our children. God's grace is sufficient! Hebrews 4:16 tells us "Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need." This is what I am doing, going to the throne and finding the grace in this time of need.
Thursday, December 31, 2009
Tuesday, December 29, 2009
Positive
Ben's test came back today and yes, it is positive. He was officially diagnosed with Duchenne Muscular Dystrophy.
We debated back and forth about whether or not to take all the kids to the appointment. We decided at the last minute to just all go together. We are a family, we'll just deal with it as a family. When we walked into the clinic, there was noone else there; it almost looked like they were only open for us lol. I went to the receptionist desk and told her who we were and who we were supposed to see. The doctor was standing right there and said, "Are these all your children? Did you mean to bring them?" Um, no it was an accident. She said well, we are discussing the results of the test and you can bring them in if you want or they can stay in the waiting area. Right then, I *knew*-she pretty much let it out that the results were bad by the way she said that.
Since we had already prepared ourselves (as much as we could), we weren't too surprised when she said that yes, he did in fact have Duchenne MD. Still with all the information she gave us, it was a little overwhelming.
Praise the Lord that I know Him. Otherwise, I would be a mess right about now. The Lord has given me a calmness and peace about this and I know that He is holding me close. We are beginning a new chapter in this journey-a chapter that will include MDA clinics, cardiologists, respitory therapists, physical therapists,etc... However, with all these new doctors and appointments, we are going to try to live life as normally as possible. We are still going to do school, church, field trips, but will make more of an effort to stop and smell the roses. We want to enjoy life as much as possible and live it up to the fullest.
I will post more about the things discussed at our appointment today in another post soon. Thank you to all who are praying for our family.
We debated back and forth about whether or not to take all the kids to the appointment. We decided at the last minute to just all go together. We are a family, we'll just deal with it as a family. When we walked into the clinic, there was noone else there; it almost looked like they were only open for us lol. I went to the receptionist desk and told her who we were and who we were supposed to see. The doctor was standing right there and said, "Are these all your children? Did you mean to bring them?" Um, no it was an accident. She said well, we are discussing the results of the test and you can bring them in if you want or they can stay in the waiting area. Right then, I *knew*-she pretty much let it out that the results were bad by the way she said that.
Since we had already prepared ourselves (as much as we could), we weren't too surprised when she said that yes, he did in fact have Duchenne MD. Still with all the information she gave us, it was a little overwhelming.
Praise the Lord that I know Him. Otherwise, I would be a mess right about now. The Lord has given me a calmness and peace about this and I know that He is holding me close. We are beginning a new chapter in this journey-a chapter that will include MDA clinics, cardiologists, respitory therapists, physical therapists,etc... However, with all these new doctors and appointments, we are going to try to live life as normally as possible. We are still going to do school, church, field trips, but will make more of an effort to stop and smell the roses. We want to enjoy life as much as possible and live it up to the fullest.
I will post more about the things discussed at our appointment today in another post soon. Thank you to all who are praying for our family.
Sunday, December 27, 2009
Can Nutritional Therapy Help MD? (and other stuff)
I found this article while browsing and thought it looked interesting. I am still VERY new to MD and there is a ton of information out there. This article on nutritional therapy is something that I am going to ask about at our next visit to the doctor.
Speaking of our next visit, we are going this Tuesday. We received a call on the 23rd that the results of our 2nd blood test are in. They did not tell me over the phone, and from what I understand, they are not allowed (but I asked anyway). They want us to come in and sit down with us to discuss the results. Unfortunately, our neurologist is out of town until January. We are seeing a different doctor at the Neuro-Muscular Disorder clinic at Children's. In the back of my mind, I am still hoping that it is something else....something less severe. The wheelchair part is something that I can handle--the life-expectancy being in the 20's part is not. As I have said before, only the Lord is the One who will see me through this.
The last 2 weeks or so have been a little strange. After the initial shock of it all, after weeping and crying out to the Lord, I have a strange sense of peace. I don't know if the busy-ness of this time of year has taken my mind off of it some or what. I am truly thinking that Lord is just plain giving me comfort, showing me that He is in control and that He will hold us up and that things will all be done according to His timing. That really is comforting. I can feel the prayers and it is so amazing to me.
Speaking of our next visit, we are going this Tuesday. We received a call on the 23rd that the results of our 2nd blood test are in. They did not tell me over the phone, and from what I understand, they are not allowed (but I asked anyway). They want us to come in and sit down with us to discuss the results. Unfortunately, our neurologist is out of town until January. We are seeing a different doctor at the Neuro-Muscular Disorder clinic at Children's. In the back of my mind, I am still hoping that it is something else....something less severe. The wheelchair part is something that I can handle--the life-expectancy being in the 20's part is not. As I have said before, only the Lord is the One who will see me through this.
The last 2 weeks or so have been a little strange. After the initial shock of it all, after weeping and crying out to the Lord, I have a strange sense of peace. I don't know if the busy-ness of this time of year has taken my mind off of it some or what. I am truly thinking that Lord is just plain giving me comfort, showing me that He is in control and that He will hold us up and that things will all be done according to His timing. That really is comforting. I can feel the prayers and it is so amazing to me.
17,771
We received the results of one of Ben's blood tests a few days ago. Basically it was checking for something called "Creatine Kinase", a CK test. When the muscles break down, CK releases into the bloodstream, so when it is elevated, they know that there is some kind of problem with the muscles. The nurse was not sure what the "normal" range was, but from my findings, it seems to be somewhere in the range of 22 to 198 (some even say up to 400U/L). Ben's is 17,771.
The nurse said that since it is elevated, it indicated that yes, he has a muscle disorder, but the doctor is not saying what yet until that 2nd test comes back (around the 22nd). The 2nd blood test is looking for the specific gene and mutation, which will tell us exactly what he has.
I am surprisingly okay right now. I know that it is in the Lord's hands-as it was before we even knew anything. I also know that many prayers are going up for him and my family. It's funny, people ask me, "how is Ben doing?" Well, he is doing exactly the same as he was before November 28th. He doesn't feel any different and he doesn't really understand what is going on. He just knows he has been to the doctor's a few more times than normal.
He did have a problem the other day, saying the arch of his foot hurt-and he crawled around for a while. Again, this isn't totally abnormal for Ben. He did it a few times in the summer, his leg or foot would hurt and he would crawl or I would carry him (he is still rather small for a 5 year old). I asked the doctor about it at his last check up and at the time, there did not seem to be any concern. Now I am questioning everything!
Thank you again for the prayers, they are truly being felt! I will update again when our next test comes back.
The nurse said that since it is elevated, it indicated that yes, he has a muscle disorder, but the doctor is not saying what yet until that 2nd test comes back (around the 22nd). The 2nd blood test is looking for the specific gene and mutation, which will tell us exactly what he has.
I am surprisingly okay right now. I know that it is in the Lord's hands-as it was before we even knew anything. I also know that many prayers are going up for him and my family. It's funny, people ask me, "how is Ben doing?" Well, he is doing exactly the same as he was before November 28th. He doesn't feel any different and he doesn't really understand what is going on. He just knows he has been to the doctor's a few more times than normal.
He did have a problem the other day, saying the arch of his foot hurt-and he crawled around for a while. Again, this isn't totally abnormal for Ben. He did it a few times in the summer, his leg or foot would hurt and he would crawl or I would carry him (he is still rather small for a 5 year old). I asked the doctor about it at his last check up and at the time, there did not seem to be any concern. Now I am questioning everything!
Thank you again for the prayers, they are truly being felt! I will update again when our next test comes back.
Neurology
We had our appointment with the neurologist here at Children's Hospital. Have I mentioned how grateful I am that we live so close to Children's?! Anyway, this doctor specialises in MD and has participated in several clinical studies for it. He did a physical exam of Ben and said that his thigh muscles are weak (which we knew) and that he suspected the same as the ER docs, MD.
He did 2 blood tests, the first to check his muscle enzymes (if these are elevated, it is a positive diagnoses), and he order the 2nd test "just in case the first is positive"-this way they won't have to stick him again. The 2nd test checks for a lack of a protein called Dystrophin which will indicate which type of dystrophy he has (again, if the first test is positive). We will find out the results of the first test today (anxiously waiting!) and the other test in early January. He has also sent our information to the MDA clinic at Children's, they should be calling to set up an appointment for us. All that said, right now we are just waiting to hear the results. Thank you to everyone who is praying for us!
We had our appointment with the allergist too. Nothing came up on the testing so they want to draw blood to make sure (I wish we would have known that on Tuesday, when they did the first blood draw!!). He seems to think that it is some kind of nut that he may be allergic to. Who knows??
Originally posted December 10, 2009.
He did 2 blood tests, the first to check his muscle enzymes (if these are elevated, it is a positive diagnoses), and he order the 2nd test "just in case the first is positive"-this way they won't have to stick him again. The 2nd test checks for a lack of a protein called Dystrophin which will indicate which type of dystrophy he has (again, if the first test is positive). We will find out the results of the first test today (anxiously waiting!) and the other test in early January. He has also sent our information to the MDA clinic at Children's, they should be calling to set up an appointment for us. All that said, right now we are just waiting to hear the results. Thank you to everyone who is praying for us!
We had our appointment with the allergist too. Nothing came up on the testing so they want to draw blood to make sure (I wish we would have known that on Tuesday, when they did the first blood draw!!). He seems to think that it is some kind of nut that he may be allergic to. Who knows??
Originally posted December 10, 2009.
Life
Life has certainly been keeping me busy!
My kids went to a birthday party this past Saturday and I noticed after being there for about an hour or so that my youngest son started swelling in his face and lips. This happened once before, this past summer (ironically after a birthday party?!). We were told then to just give him Benadryl and watch him closely (they didn't need to see him since he wasn't having any trouble breathing). They did tell us that if it happens again, then we should take him in because a 2nd allergic reaction could be far worse.
So we went home, gave him some Benadryl (which I now carry with me lol) After about 2 hours he didn't look much different so off to Children's Hospital we went.
The Doctor there wanted to look at his stomach and legs to see if he had a rash. It was when she looked at his legs that I realized something else was wrong. She said, "wow, it looks like he has a charlie horse!" Then she noticed his other one looked the same and started asking me questions. I let her know that he has always had some trouble with walking, running, jumping...but we had it checked out when he was almost 2 and the doctor at that time didn't seem concerned....just said that his 5 older siblings needed to stop carrying him around all the time. He didn't crawl until about a year old, walked at 21 months, ran (his way of running) about 3 or 4 and learned how to jump with both feet off the ground this past spring. He is 5 1/2 years old.
The resident doctor rounded up some other doctors and did a few tests on him, such as getting up from a sitting position-he can do it, but he "walks up himself with his hands" instead of just getting up. So basically, with his large calf muscles, difficulty in climbing stairs, "climbing up himself", they have strongly encourages us to see a neurologist. They think our son has Muscular Dystrophy.
Whew! We were shocked. We now have an appointment with the neurologist, and an allergist (the reason we went to the ER anyway). I have done some research on my own and what I am seeing does not look good. But I also know that he has NOT been diagnosed yet. From what I am reading, there are at least 9 different dystrophies: and they range WIDELY in severity. Sadly, the most common one, Duchenne's, is also the most severe.
Only by God's grace am I going to be able to deal with this. I called a family meeting with the children and explained that we will likely be experiencing a new kind of normal. We will still being doing school, many church activities of a pastor's family, and living life as normally as possible, with the addition of new doctor's appointments etc...
We are at the point (most of the time!) that we will just accept whatever the Lord has for him and for us. Not always easy. But His grace is sufficient for me.
Originally posted at www.familiesareablessing.blogspot.com on November 30, 2009.
My kids went to a birthday party this past Saturday and I noticed after being there for about an hour or so that my youngest son started swelling in his face and lips. This happened once before, this past summer (ironically after a birthday party?!). We were told then to just give him Benadryl and watch him closely (they didn't need to see him since he wasn't having any trouble breathing). They did tell us that if it happens again, then we should take him in because a 2nd allergic reaction could be far worse.
So we went home, gave him some Benadryl (which I now carry with me lol) After about 2 hours he didn't look much different so off to Children's Hospital we went.
The Doctor there wanted to look at his stomach and legs to see if he had a rash. It was when she looked at his legs that I realized something else was wrong. She said, "wow, it looks like he has a charlie horse!" Then she noticed his other one looked the same and started asking me questions. I let her know that he has always had some trouble with walking, running, jumping...but we had it checked out when he was almost 2 and the doctor at that time didn't seem concerned....just said that his 5 older siblings needed to stop carrying him around all the time. He didn't crawl until about a year old, walked at 21 months, ran (his way of running) about 3 or 4 and learned how to jump with both feet off the ground this past spring. He is 5 1/2 years old.
The resident doctor rounded up some other doctors and did a few tests on him, such as getting up from a sitting position-he can do it, but he "walks up himself with his hands" instead of just getting up. So basically, with his large calf muscles, difficulty in climbing stairs, "climbing up himself", they have strongly encourages us to see a neurologist. They think our son has Muscular Dystrophy.
Whew! We were shocked. We now have an appointment with the neurologist, and an allergist (the reason we went to the ER anyway). I have done some research on my own and what I am seeing does not look good. But I also know that he has NOT been diagnosed yet. From what I am reading, there are at least 9 different dystrophies: and they range WIDELY in severity. Sadly, the most common one, Duchenne's, is also the most severe.
Only by God's grace am I going to be able to deal with this. I called a family meeting with the children and explained that we will likely be experiencing a new kind of normal. We will still being doing school, many church activities of a pastor's family, and living life as normally as possible, with the addition of new doctor's appointments etc...
We are at the point (most of the time!) that we will just accept whatever the Lord has for him and for us. Not always easy. But His grace is sufficient for me.
Originally posted at www.familiesareablessing.blogspot.com on November 30, 2009.
Welcome :o)
I have started this new blog to keep friends and family updated on my youngest son, Benjamin. As of today, December 27, 2009, we are in the process of the official diagnosis of Muscular Dystrophy. This will also be a place for other parents of MD children to come and find resources, be encouraged, and connect with one another on this journey.
I will be reposting a few entries from my other blog to this one in order to keep everything in one place :o).
I will be reposting a few entries from my other blog to this one in order to keep everything in one place :o).
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