A Present from God

Today is Anna's 5th birthday. She is still at that fun age where she actually believes you when you tell her she looks so much older today, etc. I even got her to finally put her dirty clothes in her basket instead of on the floor by telling her that once you turn 5, your brain just knows how to do that- day 1 of being 5 went well. She had school today and I had the day off because I had a conference for work last Saturday. Chris and I were on our way bringing her to school this morning and it was snowing like crazy- the big fluffy snowball kind of snow. Anna looks out her window and says, "Wow- I didn't know he would send that much!" I asked her what she was talking about...she said, "Well, I asked God for snow for my birthday and he sent me a whole bunch!" Yes- you can all thank Anna for our lovely weather we had today :) On a good note, Chris and I were much relieved that she didn't ask for a baby brother for her birthday because I think we've had enough surprises and stress at our house lately!

Sarah's Political Opinion

While I'm sure not everyone agrees with Sarah's opinion of our country's leader, she sure looks cute expressing her views :)

Sarah Plays Peek A Boo

As promised- here is the video of Sarah playing Peek A Boo. She does this with just about everything now- bibs, blankets, stray clothing.....

Worry, Worry, Worry

We had our follow up with the pediatrician today. Alex continues to do well and feel well. He has had many behavioral outbursts which are driving us crazy, but I guess are part of the whole spectrum of problems with this diagnosis. Speaking of the diagnosis....the rheumatologist called me at work today and said that she saw the report from the cardiologist and that she does not agree with his diagnosis- she feels very strongly that this is rheumatic fever and that Alex has met enough of the criteria for this that we need to be very cautious and conservative. She also said that she wants us to go and get a second opinion. She was relieved to hear that his heart checked out ok, but she does not feel that the timing or the type of arthritis she saw was right for post strep reactive arthritis. She is going to call the strep guru over at the U of MN to get his opinion as well, but she does not want us to count that as our second opinion. She actually wants us to go and see another pediatric rheumatologist which we will be doing in the near future. She said that if this were her child, she would be very careful when deciding how long to proceed with antibiotics. She is now saying a minimum of 2-5 years but more likely until he is in his 20s. On the good side, she is 99.9% positive this is not JRA so we can skip the eye exam unless his arthritis comes back (the less appointments the better right now). Lots to think about I guess. The pediatrician wants us to bring Alex back for a throat culture anytime he complains of ear pain, sore throat, headache or runs a fever in the next year. Trouble is, Alex doesn't ever complain so this will be an ongoing battle with trying to get information out of him. The big problem with the diagnosis of rheumatic fever is that once you have this diagnosis, it is with you for life. You always have to take antibiotics before dentist appointments, surgeries, etc. Also, his chances of getting rheumatic heart disease went from 3% to 50% anytime he has an untreated strep infection. That is really the only non-reversible problem with this disease. Once the heart is damaged from it, there really isn't any going back. We do have a lot to be thankful for though- Alex looks and feels really good now and his body seems to be getting back to normal. I'm still struggling with the fact that this is something that just won't go away. It will always be in the back of our minds now as a worry anytime he is sick. We've certainly dealt with our share of illnesses in the past, but it's different when you know you've just gotten a lifelong diagnosis. It kind of feels like we have entered a whole different realm of parenting. I really now do appreciate the term "normal, healthy kid" (those of you from work know what I'm talking about). I just wish we could go back in time and just have "regular" worries instead of these really icky ones......Anyways.....I promise to post something more upbeat and happy soon! Sarah is becoming quite the little trickster and has learned to play peek-a-boo with her blanket (video coming soon).

A sigh of relief

Today brought good news- finally. Alex's arthritis seems to have pretty much disappeared overnight. He is not complaining of anything hurting today and is back to running around like a mad man. All of the joint swelling and warmness has subsided. We will see the rheumatologist again in 2 weeks, but hopefully that will be end of our relationship with her! We saw the cardiologist today and Alex had an echocardiogram and an EKG done- both normal thank God. The cardiologist said that he would label this as post strep reactive arthritis and not rheumatic fever because Alex does not have any cardiac involvement at all (again- thank God). Also, rheumatic fever is not a good label to have as there are certain precautions and things that go with that so it's not a diagnosis they like to hand out. There is a physician at the U of MN that is a strep specialist who the cardiologist happens to work with. He is going to give all of Alex's information to him and consult with him about whether or not there is anything else we should be doing at this point and to see if he concurs with the cardiologist's diagnosis. It seems like there is a spectrum of severity with strep related illnesses and Alex was very fortunate in that it did not attack anything except his joints. If this is indeed what they are calling it, the arthritis will not come back and will not have caused any permanent damage. We are still going to bring him in for an eye exam because if by some remote chance it really is JRA, this would show up in an eye exam. For now, we will continue to give Alex pencillin twice a day for a year and then have another echocardiogram and EKG and a visit with the cardiologist to discuss what to do next (hopefully nothing). We are all grateful, relieved and completely exhausted........

Update

We saw the rheumatologist again today and don't have a ton of news, but things are not worse either. Alex is finally feeling a bit better- only a few complaints today of his fingers and shoulders hurting. The rheumatologist strongly feels that this is related to the strep infection. She thinks it is most likely rheumatic fever since the arthritis seems to be jumping around and not really sticking to any one joint. There isn't a specific test that can just tell us for sure that is what this is- his "long term" strep test was right in the middle- not extremely high, but not normal either. The good thing is that the arthritis should be completely gone relatively soon (within a week or 2). The bad thing is, we need to watch his heart closely as rheumatic heart disease can be a permanent problem after rheumatic fever. We see the cardiologist on Wednesday and will likely have frequent follow ups with him. Until we get his heart "cleared" he needs to stay out of gym class, but otherwise went back to school today. Now the decision is, how long to keep him on prophylactic antibiotics. At least a couple of years, but some studies suggest until he's in his 20s. That is a long time to remember to take a medication twice a day. We will probably opt to have him get a shot once a month instead just so we don't ever forget since missing even one dose could have pretty significant consequences should he ever be exposed to strep again. For now, he's on oral penicillin and we will see what the cardiologist would recommend. The rheumatologist also said that we could get another opinion and that she would also be talking with some of her rheumatology friends to get other suggestions for us. Truth is, we may never know exactly what this was, but we still need to make a decision based on what we think it was/is. Alex will continue on his Naproxen until the arthritis is completely gone, but hopefully this arthritis will not come back and will not have any long term effects on him. Chris and I both said that if all we come out of this with is a penicillin prescription for 15 years and a few more doctor visits, we are ever so grateful. This has been an extremely long week and we are so thankful to have a "kind of" diagnosis at this point. I'm sure we'll both sleep better after we get his heart all checked out on Wednesday. Thanks to everybody for all the prayers and cards! I promise to post something "non-medical" very soon.

Bone Wars

Well, our horrific week has finally come to an end. Alex will be going back to the rheumatologist on Monday and to the cardiologist for an echocardiogram and EKG on Wednesday. In the meantime, we just wait and worry. The swelling in his right knee (which was by far the worst) is completely gone today, so that is definitely cause to celebrate! The strange rash on his left wrist is also gone. The arthritis has now moved to the smaller joints though as his knuckles are a bit swollen and painful tonight. His left knee is also causing him quite a bit of pain. He has been pretty good dealing with all of this, but he has started acting out. I think he's just so exhausted and sick of being in pain that by the end of the day, he just has a total meltdown- it's hard to watch. He's been sleeping in until nearly 9 every morning- which is sooooo not like our normal early riser (usually up by 5) so I keep hoping that the extra sleep is his body's way of repairing itself. Not too many days ago I would have just about paid him to sleep in that late......as they say- be careful what you wish for! Anyways, I've been trying to talk to the kids about what is going on. Poor Anna thinks that this was all caused by Alex climbing on the sticks outside and she keeps saying, "I'm not ever going to climb on sticks mommy"....Doesn't seem to matter what I tell her about the 2 things being unrelated. Alex on the other hand seems to understand a bit more. We have been careful to let him know that this is not something he caused or had any control over. When I was talking about it with him tonight, he couldn't really tell me where it hurt exactly so I had the idea to draw a picture of a body and then have him draw inside of it what was going on in his body right at that very minute. After he had drawn it, I asked him to explain it to me. He said that the little circles (notice in the left knee and left hand area) were bullets that were being shot over and over out of his bones into his joints. He said, "It's pretty much just a bone war in there right now". Talk about a metaphor! We are still praying this will all be over soon, but are trying to be patient. Thanks again for all the calls and support. There really is nothing anyone can do right now except pray.

Possibilities

Well, we saw the pediatric rheumatologist today and Alex had probably the most thorough assessment done on him that I have ever seen in my whole life. She spent nearly 2 hours with us and explained a lot of things. We still do not have any answers, which is the hard part with this disease- there is not a specific lab test that can just tell you exactly what is causing this. Most of it is treat the symptoms and wait and see. One thing we know is that it will be a long road ahead of us and we need to just be patient and take one day at a time. I think that is the lesson God wants us to get out of this and I am trying really hard to learn it. The one thing that helps incredibly is that Alex has been an absolute rock star during all of this. He has not really complained about any of the appointments and he actually said, "It was really fun going to your doctor's today mom" (we are seeing rheumatologist at Gillette). Ah, to be 6 and unaware....

Onto the visit. She told us that he definitely has arthritis in many of his joints- both knees, both wrists, both ankles, both hips and both shoulders. However, it doesn't seem to affect all of the joints at the same time- it moves around. She gave us a list of possibilities:
1. It could be post strep reactive arthritis which typically goes away after a period (usually less than a year). The problem with this is that because the risk of developing rheumatic heart disease in these kids is significantly higher with any subsequent strep infections, he would have to be on an antibiotic for some time- probably 1 or 2 years. Seems like she was thinking this was the most likely option based on his symptoms.
2. It could be rheumatic fever which is also due to strep (if he had it for a little bit before he was treated). This type of arhtritis also goes away in a relatively short time period but can cause rheumatic heart disease. Because this is a possibility, we now need to bring him to a cardiologist ASAP to have an echocardiogram done of his heart. If the lab test that shows long term (like a month or so) strep infection comes back high, she will diagnose it as this and he will have to be on antibiotics for 10-15 years and follow up with a cardiologist regularly.
3. It could also be a type of serum sickness caused from his antibiotics he was on from his strep. Problem with this is there is absolutely no way to be sure this is what caused it.
4. It could be Juvenile Rheumatoid Arthritis, although she said she didn't think so, but she wouldn't probably diagnose this until he had his arthritis for like 6 months to a year. So, he'd still be put on an antibiotic long term anyways.
5. It could be a funky viral infection, like parvovirus. This type of arthritis can go away in as short as 2 weeks but can last up to a year. He has been tested for this so if this were to come back extremely high and the strep tests extremely low, she would go with this diagnosis. She would still probably recommend the antibiotic treatment just in case though for a little while.

On a good note, his ANA was negative, which is great news, relatively speaking. It means he doesn't have anything "really bad", like lupus for example. Also, he is moving around and even rode his bike for about 10 minutes tonight. The medication seems to be helping his pain and he is a little back to his goofy self. He drew cat whiskers on himself for his appointment today- in permanent marker- it was a good look!

We are so thankful for all of the support we have received already! I am trying to think positive and keep optimistic. I know that there are far worse things in this world and we will get through this. We have tried not to scare Alex too much by talking about it or crying in front of him, but he's a smart kid and I think he's trying to help us by not complaining- which breaks my heart even more. Not a day has gone by that I haven't thought to myself, God, I am so lucky to have healthy kids. And even now when I think it's really unfair and I get really angry about it, I have to stop and think that there must be a reason for this and we are going to learn something important during this journey- I'm sure of it. I will learn more compassion for the parents of the children I take care of and I will learn an even deeper appreciation for the health of all the people in our lives, especially our children. Thank you to everyone for the prayers and the happy thoughts. Alex loves to get mail, so if anybody wants to send any cards, I know he would appreciate it. No sappy sad cards though, just funny ones please :) The sympathy is lost on him at this point as he thinks so far this is all "really cool" (after the pain has subsided that is!).

Good Morning (or....not so good, but it is morning:)

Here are some pictures to what we woke up to today- Alex now has a very reddened wrist and he is still refusing to walk but at least is not crying in pain. Anna has pink eye and is complaining that her ears hurt and then.....Chris went to get Sarah out of bed and she is pretty much covered head to toe in a bright red rash. What a day already. The one good thing is that I think Sarah has Fifths disease and that was one of the tests they ran on Alex because rarely (like 5% or something) it can cause a transient arthritis that goes away in about 2-4 weeks. We are hoping the 2 things are related. Onto the pediatrician we go.....

A Lesson in Appreciation

Well, it seems that life was going along a little too well for us and God has decided to throw a bit of a monkey wrench in the whole situation. As some of you may already know, Alex has been giving us a lot to worry about the last couple of days. It started in Saturday evening when he was complaining about his wrist hurting. He said he had fallen outside so I didn't give it too much thought and he put an ice pack on it and went to bed. Sunday morning he woke up with knee pain on the right side, which throughout the day progressed to ankle pain on the left side. By Sunday afternoon, he was pretty much just lying around. Since he had recently had strep throat, I was a bit concerned that something was going on. We went in to see the pediatrician today (whole new topic- but our beloved pediatrician is leaving so we are attempting to transition to another one- timing couldn't be better :( ) and she ran a battery of tests, most of which will not be back until end of this week probably-mostly checking for Lyme's disease, JRA, etc. At the doctor's office he was actually acting pretty good, up walking, not really complaining too much. When we got home, the doctor called and said that his sed rate was high (indicator of inflammatory process somewhere) and that she wanted to increase his Ibuprofen and that I should bring him back if his joints became "hot" or he ran a fever. Well, around 3:00 or so, he wasn't even moving. We couldn't get him to walk or even move his arms. He was in excrutiating pain. We attempted to soak him in a warm bath, which was just torture for the poor kid because he then had to get dressed (or be dressed, actually) which made him scream in pain for about 15 minutes. My heart was just breaking. As anyone who knows Alex knows that he is such an active kid and really tough so this just killed me to see him just sobbing in pain. Anyways, we ended up in Children's ER tonight with not so reassuring news. In the ER, his temp was 101.5, and many joints were "hot", but not red and he was in so much pain he didn't even move- by this time Chris was carrying him from place to place. The doctor said that he has "some kind of arthritis"- now we just need to figure out which kind. Although he recently had strep, he didn't feel his arthritis was really related to that. He thought this looked more classic JRA or something similar. We are hoping for strictly some funky viral infection (which it could be). We won't know anything for a few days at least. For now, he is on some really strong pain killers (the Vicodin in the ER made him extremely goofy :) and needs to just take it easy. This is so hard. I have never thought I took for granted the fact that our kids are healthy. But, when faced with something like this, you can't help but think of all the years you didn't have to worry about this kind of thing. Alex has always been a handful for us physically. But, I would give anything right now to have him tearing around this house like a maniac. Keep us in your prayers and I will post news as I get it.

Behind the Times

I have been realizing more and more how much of a different world my kids will grow up in compared to the world I knew as a child. They are far more technologically savvy and everyday it seems there is something new that they learn. Just the other day, I was telling Anna that I needed to talk to Alex's teacher about something and she said- well, mom, just email her- then you don't need to be interrupted with a phone call.....hmmm.....true, but is that really always the best form of communication? I took Anna to Lookout Ridge yesterday- which is an indoor climbing/playground that is a great way for kids to burn off some winter energy! While there, I noticed many of the parents texting while "playing" with their kids- what an example!!! I was astounded by how focused these parents were on their gadgets and I kept thinking how much fun they were missing out on! I am forever amazed at how incredibly good Alex is at the computer, running the TV (which, with 4 remotes baffles me sometimes) and in general just figuring out all of this "new"technology. I had to laugh today though when Alex was talking about going to see a movie and he then decided, "Mom, I don't want to go see that movie, let's wait for it to come out on DVD and we'll just rent it. But, we have to make sure that it's available in blu-ray because that is really the only way to watch movies now." I always thought that I was pretty good with keeping up with the latest gadgets and technology, but man sometimes I swear the 6 year old has a leg up on me!!! At least Sarah still appreciates the simple things in life. Here is a picture of her attempting to eat Jazz's nametag (had to put the camera down when she actually got it in her mouth)- I know, not the most sanitary thing, but at least she isn't DVR recording every episode of Spongebob on me! (yes, that was Anna :).