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.

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!

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

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

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

Still waiting

Something I have had to learn over the last 7 months of Matthew's illness is patience. Nothing happens as fast as I would like it to. So we are still "patiently" waiting to find out our test results. We have a doctors appointment this Saturday at 4:30pm. We are suppose to find out the test results then. I am expecting for them to tell us that they still don't know anything. That is just because that is what we have heard for the past 7 months. We will see though. I will update after Saturday. Please keep praying for our guy. He is still having good and bad days. Today has been hard, but God is good and gives Matthew relief some days and we are thankful for that.

Christina

The MRI

Matthew did wonderfully today. It was a little scary for him to go into the MRI room without Mom and Dad so a couple tears were shed by him(and me later), but he was very brave. The hospital staff was wonderful. He was under anesthesia for about 3 hours. While under they could see in the scan that he had some fluid in his shoulder. The doctor decided since he was already out that they would use a needle and draw some of that fluid out and send it to the lab.

We were in the car leaving, trying to get out of the TMC parking lot when our doctor called on the cell phone and said that since we were already at the hospital she wanted to order a chest x-ray too. So we turned around and went back into the hospital for another hour. So we are glad that we got a couple extra tests done today, even though the day was longer than planned, and hopefully something will shed some light on this illness.

Matthew went to the hospital with a 101.8 fever and his feet and knees and neck were all sore. This is good as were were praying that symptoms would be present during the scan. He is doing pretty well right now under the circumstances. He is pretty loopy and has thrown up 3 times so far. He hasn't had anything to eat and very little to drink today.

Now we wait. We were told that our doctor should have the results from the MRI in a week. I'm not sure about the results from the fluid in the shoulder or the chest x-ray. I am hoping that our doctor will call the hospital sooner than that and just get the results over the phone, which I am told she can do. But either way we should know something within the next week.

Thank you all for your prayers for today. Everything went well. Praise God!! I hear Matthew saying he is hungry finally :) so I will sign off for now. I will post results on here as soon as we hear anything.

Christina for the family