Hello family and friends. Five weeks ago we travelled with Matthew to Connecticut to spend some time with Dr. Charles Ray Jones. For different reasons we came to believe that Matthew's struggle with rheumatoid arthritis might be connected to something else going on in his body, namely Lyme disease. There were tests, symptoms, history factors and other things that suggested it could be the case, but Lyme can be extremely difficult to diagnose. That's why we wanted to see Dr. Jones.
On December 22nd we met for 2 hours with Dr. Jones in his office in New Haven, CT thanks to the support, both financially and through prayer, of many of you. He ordered blood tests from several labs, completed an extensive physical exam, looked over comprehensive health records, and asked us many questions. With his experience of over 30 years of treating only children with Lyme disease we wanted his opinion to help put to rest in our minds whether Lyme could be a culprit.
We found out that he does not believe that it is Lyme. This news is for us both good and bad. Lyme is not a good thing to have so in many ways we are thankful that Dr. Jones does not think it is Lyme. It can lead to serious cognitive and physical complications besides just arthritis. On the other hand it does not leave us feeling closer to answers that might help Matthew get better. We are frustrated that many of the treatments that help so many with arthritis are not helping Matthew the way that his rheumatologist would hope.
On the flip side we are so thankful for the many positives and give God thanks for taking such good care of us and our boy. We are continually reminded that many, many people are dealing with sickness that is much harder and debilitating than what Matthew is dealing with. When he goes for his monthly IV treatment he goes to the same unit that kids go to for cancer treatments and bone marrow transplants. Although Matthew has been on prednisone for over two years he has not been severely affected by some of the side affects like rapid weight gain. Although his IV treatments cost around $2,500 to $3,000 per month, God has given us provision to make all of our insurance payments with deductables covered by grants and other aid.
As we move forward we will continue to look for ways to help Matthew. Most importantly we will continue to pray that God would grant him immediate phyisical relief. In terms of medical treatment we are trying to find ways to get Matthew off of prednisone if possible. Treatments may also include things like cortisone shot treatments in some of his joints. Whatever the case we thank you all for your support and prayers and hope that you will continue to go before the Throne of God on Matthew's and our behalf. We are so thankful to all of you for your care, demonstrated by your comments and notes, cards and calls.
Matthew is a tough kid and he is looking forward to playing Little League baseball this spring. Pray that he would be able to overcome the pain and stiffness to be able to have fun with this. Pray that the arthritis would not cause permanent damage to his joints and bones, and that it would go into remission- that he would soon "outgrow" his arthritis- that God will heal him.
In the meantime we continue under God's Mercy.
Tuesday, January 25, 2011
Wednesday, December 29, 2010
Report on our trip to Connecticut
We have been trying to keep everyone posted on our trip with Matthew to see Dr. Jones (pictured here with Matthew) in New Haven, Connecticut through facebook, but we realize this is missing some people. We left last week on Sunday December 19th, drove to Phoenix and flew from Phoenix to Hartford, CT on Monday the 20th. The weather across the country was clear and the connections were all very smooth. Matthew's appointment with Dr. Jones was on Wednesday the 22nd. We spent two hours with the doctor and he asked many questions and answered many more. He ordered many different blood tests (Matthew told me they filled 10 vials) which will be coming back over the next week or so. The results of these tests will help Dr. Jones determine whether to advise to begin treatment of Lyme disease or not.
He advised that we should continue the course of treatment for the Juvenile Rheumatoid Arthritis. Pending the results of the blood tests he will determine whether or not Matthew has Lyme. If Dr. Jones diagnoses Lyme in Matthew then he will begin a course of oral anti-biotics.
We came away with a real sense that Dr. Jones knows what he is talking about when it comes to Lyme disease and it is clear that he knows how to talk to and treat children. Matthew liked him very much and the questions that he asked Matthew indicated that he has been working with kids for a long time (30 years!) All that said, when the tests come back we feel that we can trust Dr. Jones one way or the other and that we are not being brushed aside by someone who is either too busy or doesn't know enough about it.
So now just a little more waiting. Thanks to everyone who has helped us on this leg of the journey with prayers and financial help. It has been such a blessing to have great friends and family to lean on along the way.
And as a final word, a little update on Matthew. In October of 2008 he began taking 10 mg of prednisone every day. At that time it was to control the fevers that he had been battling and stop the inflammation that was ravaging his body. Over the course of time his fevers subsided and he began additional treatments (at first an Enbrel shot once a week and now Orencia through an I.V. once a month along with Methotrexate and Leucovorin pills once a week.) His symptoms for the past couple of years have manifested mostly as swollen and achy joints (especially ankles, wrists and sometimes knees and hips.) Over the past 3 months we have been gradually stepping down the amount of prednisone he is taking because we are just not sure what long-term effect the cortico-steroid will have on his body versus the relief he is receiving from it. He is down to alternating between 5 mg and 2.5 mg daily. His right wrist is swollen most days and his ankles are often stiff especially in the mornings and evenings. Thankfully, once the pain subsides during the daytime he can carry on like a normal almost 8 year old boy.
Monday, August 30, 2010
Learning
This past week has been full of learning. This time last week we were so thankful to have some answers to why Matthew has been sick these past two years. We are still thankful, of course, but we had no idea of the work we were going to have in trying to get him treated. It didn't take long for us to figure out that there is a huge rift in the medical community on their belief of Lyme disease. HUGE. According to one of our doctors, other doctors have been run out of town for diagnosing and treating Lyme disease. It is crazy.
So you must wonder why. So do we, but what we understand it that Lyme disease is very hard to detect. The spirochete, or organisms/bacteria, are very tricky and don't always come through on the current FDA approved test. The ELISA and Western Blot tests are the current approved tests. However, they have a huge rate of inaccuracy. Why they are used I don't know. Very sick people have gone to doctors to be tested for Lyme only to have their results come back as negative and the doctors shoo them out the door telling them they don't have it. Then years later those people find a doctor that looks at them again and treats them for Lyme disease and the people are better. We know of friends of friends or read of people who have had such cases as this. Those first doctors certainly can't admit that they were wrong or there would be law suits all over the place. Instead they say that those people really aren't/weren't sick and that other doctors are over prescribing antibiotics. I'm sure there is much more here that I could say about this, but this is basically it in a nutshell. There is also a divide on how long to treat for Lyme if someone is treated.
We started to wonder if the test that Matthew had done was accurate. We have found out from a friend who has knowledge of labs and testing in the medical field that indeed the test should be considered reliable. Matthew had a PCR test that is done at the genetic level. The lab has all the right certifications for doing reliable testing in the proper manner. The problem is that it looks like this lab developed this particular test and it is not yet FDA approved. That makes a difference with insurance accepting it as a diagnosis. To us though we feel the confirmation that even if insurance won't help us at least we know we should still keep moving forward with this.
A blessing last week is that our appointment with our Rheumatologist went well. We had an appointment with her on Friday and that was the first that she knew of any of this. She is actually willing to think through this with us and talk to some doctors for us. We expected her not to believe any of this (as we know now of the rift in the medical community). So we are still looking for an infectious disease doctor who will talk to us. We most likely will be going somewhere outside of Tucson and probably outside of AZ as well.
Please continue to pray for us in this process. It is taking a lot of time and we are feeling spread thin right now. But, we feel the urgency of finding someone for Matthew soon. Please pray for Matthew as he is starting to be more sore in the mornings again. One of the reasons that the Rheumatologist was willing to look at this more with us is that Matthew's blood work keeps coming back worse these past few months. It should be getting better as he just started another new drug in April and was doing better at first. This his how it has gone with all four of the Rheumatological drugs he has tried. Pray for his little body to be protected. Some people get treated and are fine. Others are treated and then have long term effects from the chronic inflammation that the Lyme caused for so long. We are praying for total healing. Pray for us as we keep learning and have many decisions to make. Our hope is in our Lord and Savior, Jesus Christ, and not in the people/doctors of this world. He is where our peace and comfort come from.
So you must wonder why. So do we, but what we understand it that Lyme disease is very hard to detect. The spirochete, or organisms/bacteria, are very tricky and don't always come through on the current FDA approved test. The ELISA and Western Blot tests are the current approved tests. However, they have a huge rate of inaccuracy. Why they are used I don't know. Very sick people have gone to doctors to be tested for Lyme only to have their results come back as negative and the doctors shoo them out the door telling them they don't have it. Then years later those people find a doctor that looks at them again and treats them for Lyme disease and the people are better. We know of friends of friends or read of people who have had such cases as this. Those first doctors certainly can't admit that they were wrong or there would be law suits all over the place. Instead they say that those people really aren't/weren't sick and that other doctors are over prescribing antibiotics. I'm sure there is much more here that I could say about this, but this is basically it in a nutshell. There is also a divide on how long to treat for Lyme if someone is treated.
We started to wonder if the test that Matthew had done was accurate. We have found out from a friend who has knowledge of labs and testing in the medical field that indeed the test should be considered reliable. Matthew had a PCR test that is done at the genetic level. The lab has all the right certifications for doing reliable testing in the proper manner. The problem is that it looks like this lab developed this particular test and it is not yet FDA approved. That makes a difference with insurance accepting it as a diagnosis. To us though we feel the confirmation that even if insurance won't help us at least we know we should still keep moving forward with this.
A blessing last week is that our appointment with our Rheumatologist went well. We had an appointment with her on Friday and that was the first that she knew of any of this. She is actually willing to think through this with us and talk to some doctors for us. We expected her not to believe any of this (as we know now of the rift in the medical community). So we are still looking for an infectious disease doctor who will talk to us. We most likely will be going somewhere outside of Tucson and probably outside of AZ as well.
Please continue to pray for us in this process. It is taking a lot of time and we are feeling spread thin right now. But, we feel the urgency of finding someone for Matthew soon. Please pray for Matthew as he is starting to be more sore in the mornings again. One of the reasons that the Rheumatologist was willing to look at this more with us is that Matthew's blood work keeps coming back worse these past few months. It should be getting better as he just started another new drug in April and was doing better at first. This his how it has gone with all four of the Rheumatological drugs he has tried. Pray for his little body to be protected. Some people get treated and are fine. Others are treated and then have long term effects from the chronic inflammation that the Lyme caused for so long. We are praying for total healing. Pray for us as we keep learning and have many decisions to make. Our hope is in our Lord and Savior, Jesus Christ, and not in the people/doctors of this world. He is where our peace and comfort come from.
Monday, August 23, 2010
Real Test Results
After two years and one month of Matthew being sick we finally know why(we think). We are still in disbelief that this is actually true and even a little skeptical. A month ago a good friend of the family told me that they found a doctor that has been able to help their son (who has been not well for several years also). We have done so many tests with Matthew so I have become a bit unbelieving when it comes to testing for something new. However, we continue to pray that God would help us to figure out why Matthew suddenly became sick two summers ago.
After this doctor looked over Matthew's blood work for the past two years(he has his blood drawn every month)he told me he was pretty sure that Matthew is dealing with a bacterial infection(part of my disbelief is why has none of the other doctors been able to see this?). More specifically he said that he thinks that infection looks like it may be Lyme disease. Matthew has already been tested for Lyme disease in the hospital when he first got sick two years ago. However, I have learned now that you can not test for Lyme disease right away and get a positive result. It takes a while to get the positive result. Something that I guess the infectious disease doctor that ordered the test didn't know. The other funny thing is that while in the hospital two years ago they started Matthew on an antibiotic thinking he had meningitis. He stared to improve while on the antibiotic, but when the test came back that he didn't have meningitis they stopped the antibiotic. When I questioned why they were stopping it since Matthew seemed to be doing so much better their response was that it was just a coincidence that he was doing better during that time. Ugh! I wish I knew then what I know now!
So to not make this super long here is what happened. The doctor that we saw last month talked to another doctor in Boston who is suppose to be an expert on Lyme disease. He told this doctor here what test to have ordered. I took Matthew to have his blood drawn last week and sent his blood off to Texas to be tested for 20 different species of these bacteria. I got a call from our doctor here today telling me that he just got the results back and Matthew tested positive for two of the species. Borrelia burgdorferi (Lyme disease) and Rickettsia Montanensis. The second one is a close relation, I guess, to Rocky Mountain Spotted Fever, or maybe even it. Not sure.
Just a little f.y.i. Both of these bacteria are usually the result of a tick bite that transmits the disease to the host. Often those that get these diseases don't ever remember getting bit by a tick. That is our case.
The next step is to find a doctor that knows how to treat these with the right antibiotics. We are trying to be picky as we look for the right one. After two years of "trying" things and seeing several different types of doctors we want the right one that knows what he/she is doing. Not someone who thinks they might be able to treat him. Lyme disease is not very prevalent out here in Arizona. That may be why even the infectious disease doctor that we saw a couple times here didn't catch it. I don't know and that is a whole other frustration.
I don't know the prognosis for someone after having both of these bacteria for so long. I don't know when we are going to find a doctor(the doctor here is helping us to find and infectious disease doctor). I don't know what the treatment will be like or where we will have to go for it. I do know that we are still a little leery. We don't want to get our hopes up and have someone else say that those tests results aren't accurate. Dave wasn't quite sure I should even post anything yet, but I already said something on FB earlier...oops. Oh well. So here is our request. Please pray, pray, pray. God has been so good and brought us this far in our journey with Matthew. Pray that He would lead us to the right Infectious Disease doctor that really really knows how to treat both of these bacteria/diseases.
I will update this blog in the next few days and let you know where we are at with all of this. We are so blessed to have so many friends and family that support and love us. Thank you for your prayers for Matthew. God is good all the time!
After this doctor looked over Matthew's blood work for the past two years(he has his blood drawn every month)he told me he was pretty sure that Matthew is dealing with a bacterial infection(part of my disbelief is why has none of the other doctors been able to see this?). More specifically he said that he thinks that infection looks like it may be Lyme disease. Matthew has already been tested for Lyme disease in the hospital when he first got sick two years ago. However, I have learned now that you can not test for Lyme disease right away and get a positive result. It takes a while to get the positive result. Something that I guess the infectious disease doctor that ordered the test didn't know. The other funny thing is that while in the hospital two years ago they started Matthew on an antibiotic thinking he had meningitis. He stared to improve while on the antibiotic, but when the test came back that he didn't have meningitis they stopped the antibiotic. When I questioned why they were stopping it since Matthew seemed to be doing so much better their response was that it was just a coincidence that he was doing better during that time. Ugh! I wish I knew then what I know now!
So to not make this super long here is what happened. The doctor that we saw last month talked to another doctor in Boston who is suppose to be an expert on Lyme disease. He told this doctor here what test to have ordered. I took Matthew to have his blood drawn last week and sent his blood off to Texas to be tested for 20 different species of these bacteria. I got a call from our doctor here today telling me that he just got the results back and Matthew tested positive for two of the species. Borrelia burgdorferi (Lyme disease) and Rickettsia Montanensis. The second one is a close relation, I guess, to Rocky Mountain Spotted Fever, or maybe even it. Not sure.
Just a little f.y.i. Both of these bacteria are usually the result of a tick bite that transmits the disease to the host. Often those that get these diseases don't ever remember getting bit by a tick. That is our case.
The next step is to find a doctor that knows how to treat these with the right antibiotics. We are trying to be picky as we look for the right one. After two years of "trying" things and seeing several different types of doctors we want the right one that knows what he/she is doing. Not someone who thinks they might be able to treat him. Lyme disease is not very prevalent out here in Arizona. That may be why even the infectious disease doctor that we saw a couple times here didn't catch it. I don't know and that is a whole other frustration.
I don't know the prognosis for someone after having both of these bacteria for so long. I don't know when we are going to find a doctor(the doctor here is helping us to find and infectious disease doctor). I don't know what the treatment will be like or where we will have to go for it. I do know that we are still a little leery. We don't want to get our hopes up and have someone else say that those tests results aren't accurate. Dave wasn't quite sure I should even post anything yet, but I already said something on FB earlier...oops. Oh well. So here is our request. Please pray, pray, pray. God has been so good and brought us this far in our journey with Matthew. Pray that He would lead us to the right Infectious Disease doctor that really really knows how to treat both of these bacteria/diseases.
I will update this blog in the next few days and let you know where we are at with all of this. We are so blessed to have so many friends and family that support and love us. Thank you for your prayers for Matthew. God is good all the time!
Tuesday, March 24, 2009
Some progress
We got the results of Matthew's latest blood work. This is the first done since we increased the Predinsone and since he started the Methotrexate. These tests results are almost the same as the last ones done 4 weeks ago. That is good in that at least things are not getting worse as far as the inflammation goes. Now I will be interested to see if the results start to get better.
Over all Matthew is feeling better. He has more good days than bad right now. He has not had a stiff and sore neck in a couple weeks, which has been such a blessing. When he is stiff and sore right now it is generally on his ankles and feet. It has been 9 days since he has had a fever-yeah! That is big for him right now.
Matthew started Little League baseball a couple weeks ago, along with his two big brothers. We live craziness for a few months during ball season. It is fun though. We are having to make sure he doesn't do too much of the running exercises during practice. He has had a couple bad days at the beginning when he over did things the day before at practice. We are so thankful that he is able to participate in this. I think it gives him a sense of normal in a life that has been pretty hard for him for 8 months. It is great to see his excitement when he gets to go play. Our challenge is teaching him to take it easy even when he feels good, knowing that too much physical exertion for him will cause a bad day tomorrow. He is an amazing kid with such a positive attitude through all of this!
Please continue to pray that he feels good more often. In the next couple weeks we will start lowering the Prednisone. Hopefully he will be weened off of this in a few months. Pray that the Methotrexate would kick in and do its job in the absence of the Prednisone.
In Christ's Hands,
Christina
Over all Matthew is feeling better. He has more good days than bad right now. He has not had a stiff and sore neck in a couple weeks, which has been such a blessing. When he is stiff and sore right now it is generally on his ankles and feet. It has been 9 days since he has had a fever-yeah! That is big for him right now.
Matthew started Little League baseball a couple weeks ago, along with his two big brothers. We live craziness for a few months during ball season. It is fun though. We are having to make sure he doesn't do too much of the running exercises during practice. He has had a couple bad days at the beginning when he over did things the day before at practice. We are so thankful that he is able to participate in this. I think it gives him a sense of normal in a life that has been pretty hard for him for 8 months. It is great to see his excitement when he gets to go play. Our challenge is teaching him to take it easy even when he feels good, knowing that too much physical exertion for him will cause a bad day tomorrow. He is an amazing kid with such a positive attitude through all of this!
Please continue to pray that he feels good more often. In the next couple weeks we will start lowering the Prednisone. Hopefully he will be weened off of this in a few months. Pray that the Methotrexate would kick in and do its job in the absence of the Prednisone.
In Christ's Hands,
Christina
Wednesday, March 4, 2009
Reality
I thought I would report on how Matthew's first day on the new drug, Methotrexate went. As far as I can tell he has no side effects from it. We were told that when he takes in on Tuesday night he could likely feel nauseated from it. That didn't happen last night. Then we were told the next day, today, that he would probably be very sleepy. Well, he took a nap for about an hour today, but he does that often as he doesn't feel well many days. He has felt well today, no aches or fever. He had a hard day on Sunday and again yesterday. Fever and sore ankles and neck. You should see his ankles when they are swollen. Poor guy! We are thankful that so far this medicine seems to do OK with him. Tonight he takes the Folic Acid to replace what we wiped out last night.
I was so thankful to find out that Matthew didn't have a life threatening illness. I was relieved to find out that it was JRA. The reality of what this will mean for his life is now settling in for me though. It hit me yesterday and my emotions went a bit crazy. I am saddened to think that he will have these physical challenges in life(not to mention all the pain), but encouraged when I read about people who can lead a pretty normal life with the meds. Then I am worried about the long term effect of being on meds, but am thankful that we live in a time that we have access to this research and medication.
Two nights ago I had an awful headache. So bad that it made me nauseated and I couldn't stand the light. I had to just go to bed. I felt awful. The next morning, yesterday, Matthew woke up sore with swollen ankles. He had a fever and his neck and jaw were very sore. At one point he just cried because he hurt so bad to take a bit of his food. Tears were streaming down his face. He had to eat something so he could take his medicine in the morning. I know it hurt him so bad. Having just had my bad headache the night before, it really hit me hard. I can't imagine dealing with the pain that he does as often as he does. He is my hero. So as I right this with tears in my eyes from the memory of this yesterday, Matthew is running through the house shooting Trevor with his ten round Nerf gun :) I think Trevor is letting him win :). I am thankful for the good days!
Christina
I was so thankful to find out that Matthew didn't have a life threatening illness. I was relieved to find out that it was JRA. The reality of what this will mean for his life is now settling in for me though. It hit me yesterday and my emotions went a bit crazy. I am saddened to think that he will have these physical challenges in life(not to mention all the pain), but encouraged when I read about people who can lead a pretty normal life with the meds. Then I am worried about the long term effect of being on meds, but am thankful that we live in a time that we have access to this research and medication.
Two nights ago I had an awful headache. So bad that it made me nauseated and I couldn't stand the light. I had to just go to bed. I felt awful. The next morning, yesterday, Matthew woke up sore with swollen ankles. He had a fever and his neck and jaw were very sore. At one point he just cried because he hurt so bad to take a bit of his food. Tears were streaming down his face. He had to eat something so he could take his medicine in the morning. I know it hurt him so bad. Having just had my bad headache the night before, it really hit me hard. I can't imagine dealing with the pain that he does as often as he does. He is my hero. So as I right this with tears in my eyes from the memory of this yesterday, Matthew is running through the house shooting Trevor with his ten round Nerf gun :) I think Trevor is letting him win :). I am thankful for the good days!
Christina
Saturday, February 28, 2009
A Diagnosis!!!!
I am so excited I could....I don't know what I could do. My heart is light and happy though and I feel like we finally have some direction and hope for Matthew. God is good and His timing is always right.
In my last post my bad attitude was apparent. Not good. We showed up to find out our doctor was also very, very frustrated because the hospital took sooooo long to get the results to her. I was thinking she just wasn't calling me, yet she didn't even have the results until just recently. She said the MRI on Matthew's ankles gave us our diagnosis(his neck and spine looked great and the chest x-ray came back normal and so far the fluid tested in his shoulder is normal,although it will be tested for 4 weeks). He has Juvenile Rheumatoid Arthritis (JRA). A few months ago the thought of this diagnosis made me cry. Now I am so glad that the MRI didn't reveal something much worse or life threatening. JRA is what we were originally sent to the rheumatologist for. However, at that point his numbers and symptoms did not all indicate JRA. Many times it takes time for children to display all the symptoms of JRA.
What does this mean for Matthew? Well it means that we are going to start a new medication that is a heavy duty anti-inflammatory called Methotrexate. We will up the Prednisone for 4 weeks to combat the symptoms that he is having right now. It takes about 4 weeks of being on the Methotrexate for it to start working. At that point then we will start weening Matthew off the Prednisone. That will take a few months, but we are very glad to be getting him off of it. It is not a good long term drug as it inhibits growth as well as other problems you can have being on it long term.
The new medication is once a week. It wipes out the Folic Acid in his bone marrow which then helps the inflammation in his body to go down. Then the next day he takes a Folic Acid pill to replace the Folic Acid that he lost because many other parts of his body needs the Folic Acid. I don't totally understand how this works. He takes the Methotrexate at night and we will have him do it on Tuesday nights. This is because he does not have school on Wednesday and the doctor said to expect him to be very tired the day after he takes this medication. Right now this will be the best day I think. Come fall and school everyday we will have to reevaluate when he takes this.
So how long do we do this? The doctor wants to see Matthew's inflammation numbers back within normal range for at least a year before she will take him off of this(he will continue to have his blood drawn every 4 weeks now.) So first we have to make it back within normal range. Then we have to stay there. So this will be a long process. Likely years. This is all good news to us though. He will start feeling better more often!! That is huge! There is a possibility that he will out grow this and we are able to treat it right now.
So our prayer requests right now are that Matthew would have an easy transition with the new meds. The doctor has had only one child in the last eight years have a bad reaction to Methotrexate. We pray that he would do well with this drug. Also, this drug might make him nauseated at night when he takes it. We pray that that would be minimal. Pray for a smooth transition as he comes off of the Prednisone, too. Please pray for patience for us as we wait for him to start feeling better and for him to fully come off all meds years down the road.
Matthew is very excited about the possibility of feeling better soon. So are we. We know it will be a long haul until this is done, but we are so thankful that we have a direction to go and that he will be able to function normally on a daily basis.
We are so thankful for the things that God has taught us and is teaching us through this and know that He will use this experience in Matthew's life to shape him into the man that He wants him to be. I pray that in all areas and situations in our life that our family would be glorifying to our Lord and Savior, Jesus Christ. Without Him, I don't know how we would have gotten through the past 7 1/2 months. We are by no means at the end of this journey, but at a new junction. We continue tonight with hope in our hearts and smile on our faces :).
Thank you all for your interest in our family, the prayers you have lifted up, and for your love and friendship. All has been so important to us. We will continue to update this blog more in the next couple months as we have friends and family far away that I know want to check this. I hope in two or three months that his good days are all the time and if I write anything each time it would say "Matthew had another great day!"
A Happy Mom
In my last post my bad attitude was apparent. Not good. We showed up to find out our doctor was also very, very frustrated because the hospital took sooooo long to get the results to her. I was thinking she just wasn't calling me, yet she didn't even have the results until just recently. She said the MRI on Matthew's ankles gave us our diagnosis(his neck and spine looked great and the chest x-ray came back normal and so far the fluid tested in his shoulder is normal,although it will be tested for 4 weeks). He has Juvenile Rheumatoid Arthritis (JRA). A few months ago the thought of this diagnosis made me cry. Now I am so glad that the MRI didn't reveal something much worse or life threatening. JRA is what we were originally sent to the rheumatologist for. However, at that point his numbers and symptoms did not all indicate JRA. Many times it takes time for children to display all the symptoms of JRA.
What does this mean for Matthew? Well it means that we are going to start a new medication that is a heavy duty anti-inflammatory called Methotrexate. We will up the Prednisone for 4 weeks to combat the symptoms that he is having right now. It takes about 4 weeks of being on the Methotrexate for it to start working. At that point then we will start weening Matthew off the Prednisone. That will take a few months, but we are very glad to be getting him off of it. It is not a good long term drug as it inhibits growth as well as other problems you can have being on it long term.
The new medication is once a week. It wipes out the Folic Acid in his bone marrow which then helps the inflammation in his body to go down. Then the next day he takes a Folic Acid pill to replace the Folic Acid that he lost because many other parts of his body needs the Folic Acid. I don't totally understand how this works. He takes the Methotrexate at night and we will have him do it on Tuesday nights. This is because he does not have school on Wednesday and the doctor said to expect him to be very tired the day after he takes this medication. Right now this will be the best day I think. Come fall and school everyday we will have to reevaluate when he takes this.
So how long do we do this? The doctor wants to see Matthew's inflammation numbers back within normal range for at least a year before she will take him off of this(he will continue to have his blood drawn every 4 weeks now.) So first we have to make it back within normal range. Then we have to stay there. So this will be a long process. Likely years. This is all good news to us though. He will start feeling better more often!! That is huge! There is a possibility that he will out grow this and we are able to treat it right now.
So our prayer requests right now are that Matthew would have an easy transition with the new meds. The doctor has had only one child in the last eight years have a bad reaction to Methotrexate. We pray that he would do well with this drug. Also, this drug might make him nauseated at night when he takes it. We pray that that would be minimal. Pray for a smooth transition as he comes off of the Prednisone, too. Please pray for patience for us as we wait for him to start feeling better and for him to fully come off all meds years down the road.
Matthew is very excited about the possibility of feeling better soon. So are we. We know it will be a long haul until this is done, but we are so thankful that we have a direction to go and that he will be able to function normally on a daily basis.
We are so thankful for the things that God has taught us and is teaching us through this and know that He will use this experience in Matthew's life to shape him into the man that He wants him to be. I pray that in all areas and situations in our life that our family would be glorifying to our Lord and Savior, Jesus Christ. Without Him, I don't know how we would have gotten through the past 7 1/2 months. We are by no means at the end of this journey, but at a new junction. We continue tonight with hope in our hearts and smile on our faces :).
Thank you all for your interest in our family, the prayers you have lifted up, and for your love and friendship. All has been so important to us. We will continue to update this blog more in the next couple months as we have friends and family far away that I know want to check this. I hope in two or three months that his good days are all the time and if I write anything each time it would say "Matthew had another great day!"
A Happy Mom
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