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).