Sunday, January 27, 2013

Possible flare

Its been awhile since I have updated this site.  Jackson has had a rough last few months.  He has been quite sick a few times.  I think this year has been worse because he is in school now and exposed to so many germs that his body can't fight.  In the begining of December Jackson went 7 days without eating.  He did vomit twice during the 7 days but it didn't really fit the symptoms of a stomach bug.  But thats what the ped said it was.  Thank goodness he finally started to eat again as I was getting worried.  He went from 40lbs to 36lbs during this time and still hasn't put the weight back on.  He stayed healthy for a few weeks and then got really sick a couple weeks ago.  He had high fevers and was very lethargic for 4 days.  We were extremely worried about him.  I was so worried he slept with me the whole time so I could keep checking on him.  At one point his fever got as high as 104.9 and his o2 stats were 93 percent.  He took 5 days of tamiflu and a antibiotic and finally back to feeling good again the following week.  Because of all this he was 2 weeks late getting his infusion so I am a little worried on how that will affect his arthritis!
A couple weeks ago Jackson started complaining one of his shoulders hurt.  I brought it up to the rhemotolgist last Thursday while we there and he felt and noticed when he asked Jackson to run down the hallway he held that shoulder funny.  He said that joimt is hard to feel and harder to pin point if its the arthritis causing the pain.  He told me to watch it and if it gets better after the infusion but then hurts again closer to when the next infusion is due we can pin point it better to being the arthritis.  Last night he started complaining of his left wrist hurting so I am wondering if he is flaring.  I wonder if because he was so late with his infusion it is causing all this pain all of sudden.  I am sad about all of this and would like it all to go away!  It gets very hard to constantly deal with a sick child.  To date he has missed almost 20 days of school due to appointments and illnesses.  Its just not fair!  He does not take a daily NSAID anymore because it was causing a lot of stomach problems so we stopped it but I am going to ask if maybe we could try a different one for now until we get the pain under control. 
Last eye appointment was the end of December.  Overall good appointment.  Left eye had trace to 1+ cell and right eye no cells with scaring.  So not perfect but I will take it.  His vision has greatly improved since having glasses.  When he first got the glasses we were told it would only be temporary but now the doctor said to wear them at least 2 more years and then maybe we can talk about not having to wear them.  So that was a little disapointing. 
As Jackson has gotten older I have tried several times to explain his disease to him and what it all entails.  Until recently he assumed this was normal for all kids, so sad.  I bought a couple of kids books off amazon that take about JIA.  We have read them a couple times.  He seems to understand very little which makes it hard but he is young yet.
March marks 3 years since we first noticed something was wrong with Jackson but it took them until the end of May to get a official diagnois.  I can't believe its only been 3 years, it feels like it has been years.
Well thats it for now.  Thank you  all who send thoughts and pray for Jackson.  People often don't think to ask how Jackson is doing with his disease and for those that do it means so much to me that you care enough to think of him!


  1. That's got to be hard for him to understand his condition & hard on mom to answer tough questions like, "why me?". I hope his pain gets figured out & resolved. I am sure it's heartbreaking to see him in pain & it's aggravating to know this nasty autoimmune disease is behind it. Little boys should only have "owies" from playing too hard, not from arthritis when they're so little. I hope he gets back on track with his health & can stay that way. Keep up the good work, Sara!

  2. If you ever want to vent to another mom in a very similar situation, feel feel to reach out to me. You are welcome to add my blog to your list as I update it regularly. You can reach me by emailing me through the email on my blog. I hope your little boy is not flaring and makes some improvements. I completely understand how you feel right now - hang in there. -Nicole