Month: November 2012

Wed, Nov 28

Today we had Zach’s 6 week check-up with Dr. Toth (Z’s Rheumatologist). It went very well! The basic purpose of this visit was to check to see how Z was handling the medications and see what kind of progress there was on the swelling and pain on the joint. She was happy to hear that Zach was tolerating the medicine with no problems. Although Zach reported no change with pain in general with his wrist, the doctor did notice that the swelling had gone done in the thumb. It is still swollen a bit in the wrist, but getting better. We are doing what we need to do and so far so good so that is a great report! We are to see her again in another 6 weeks (it usually takes 3 months for the medicine to take full effect) and then she will assess Z’s joints and determine what steps to take next. Yes, all good stuff.

Then she reviewed the blood test results. Basically good news there too. Both the RF (rheumatoid factor that can predict long-term prognosis) and the adult factor (risk of developing arthritis as an adult) were both negative so that is good! However, his ANA (antinuclear antibody) was positive so that means he is at a higher risk of developing chronic eye inflammation (uveitis). This just means that we have to be certain that Zach has regular eye exams (every 3-4 months) to monitor inflammation. We already had his initial eye appointment in mid October and so far no inflammation – just glasses! So right now the type of arthritis that Zach most fits with is Oligoarthritis JIA (Juvenile Idiopathic Arthritis). He does not completely fit this, however, because even though the olio type affects four or fewer joints of the body (for Zach it is just his right wrist and thumb), it typically effects the larger joints of the body (knees, ankles or elbows). On the other hand, Polyarthritis affects five or more joints and usually affects the small joints of the fingers and hands or weight-bearing joins such as knees, hips, ankles and feet or wrists. However, kids with poly usually have a positive blood test for the RF factor. The type he has does not really affect treatment, but I just was curious to know where Zach fits into the spectrum.

We shared with the doctor that we were participating in the Jingle Bell Run on Dec 8 and that we had raised almost $2000 for the foundation and she was excited to hear that! She really loved our team name too – The Ram Fam! She told us about a cool summer camp for kids with medical diagnoses and gave us a brochure it – Flying Horse Farms. This place is awesome! Here is the description from the website: “Located on 200 acres of rolling hills just outside Mt. Gilead, Ohio, Flying Horse Farms is where children with serious illnesses come to experience the magic of camp. For a week at a time, being sick takes a backseat to simply being a kid. And fun is priority number one.” I mean how awesome is this. They plan the weeks so that children with the same type of illness are camping together in the same week. So, all the kids with rheumatology concerns would be at camp during the same week and they would be the only ones there. And the best part?! There is no cost for families to send kids for a week!! After checking out the website Zach is pumped to go and just wishes he doesn’t have to wait until the end of July to go! I already applied for Zach to attend so hopefully they will have room for him. I’m excited to get involved with the camp somehow…even if it is just making a donation. It looks like an amazing place!

So our post doctor’s appointment lunch at TGIFridays was a different experience than 6 weeks ago! It is amazing what time can do to help with acceptance. What a blessing. Oh, and I was finally ready to get an organizational system and, I must say – it ROCKS!!!

Nov 17, 2012

So I’ve mentioned a little bit on facebook and in a blog or two about our family’s most recent hiccup, Zach being diagnosed with Juvenile Rheumatoid Arthritis, but I thought it might be good if I chronicle our experience on this journey since it appears that it will probably be just that.

Let me start from the beginning. Last fall (2011) Zach was playing football with a buddy in our front yard. He was explaining a pass and somehow banged his right wrist onto a tree. It didn’t really swell up that much, but he complained about it hurting a little bit. We just chalked it up to jammed finger and didn’t think anything more about it. It would flare up every now and then and Zach would complain about it, but these complaints were always dismissed because: (1) they always seemed to correspond with a long round of video-game playing and (2) Z has always been a little bit of a drama queen! Anyways, time went on and we didn’t think too much about it, since he was able to do the same activities as he could before. Cut to the end of the summer when Nick came home for a visit. He took one look at Z’s wrist and said, “man, you should have that thing looked at”. Okay, if the 20-year-old is noticing a problem, we should probably do something about it!

So, we got it x-rayed. While the x-ray tech did not notice any problem, they recommended that a bone doctor take a look just to be sure. The bone doctor said the film looked abnormal and sent us for an MRI. At this point I started getting worried about what exactly they were looking for or trying to rule out. Not really knowing what would come next we did the MRI and waited to hear. I got a call from the bone doctor at about 7:15am, just as I was getting ready to leave for work about a week later and he dropped the bomb that Zach might have Juvenile Rheumatoid Arthritis and that we were to see a Rheumatologist for the next step in the diagnosis. “I’m sorry, what??!”, I was thinking. I was told a bunch of info in a few minutes in the midst of the hustle bustle of the house getting ready for school and work and was already overwhelmed. I was told that the doctor’s office would schedule the appointment and just call me to confirm the date and time. From there I took on the “I’m not going to worry until there is something to worry about” thing which is so much easier said than done. I could not help myself from searching JA on google to learn more about what might be in our future. I was stunned reading some of the information and quickly went back to my facebook.

Oct 10 – All three of us went to the appointment at Akron Pediatric that morning with Dr. Toth, the Rheumologist that the bone doctor recommended. I had no idea what to expect from this appointment. I tried to refrain from expectations and just take it as it came. I liked the doctor right away. She talked directly to Zachary as the patient and did a thorough examination of him and all his joints and took his history. After the examination, she went into explanation mode and gave us a pamphlet about Juvenile Rheumatoid Arthritis. As she explained the diagnosis and the type of JA that Zach most likely has she referenced pages in the pamphlet for us to read. My anxiety level peaked when she started talking about medications for treatment including methotrexate, a low level chemo drug used for kids with cancer. “Okay, I’m done – check please!” My eyes filled with tears, but I managed to hold it together even as I was given a bunch of paperwork and three prescriptions. When we got to the part where we could ask questions, I asked, “So…what else could this be?” To this the doctor replied, “this is what it is.” She explained that since the MRI already showed some deterioration of the bone, she wanted to take an aggressive approach to treatment which included a daily dose of an anti-inflammatory drug called meloxicam, one dose weekly of methotrexate (6 pills) – she said it pick a weekend date because of the severe side effects of this drug including nausea and vomiting and then a daily dose of folic acid, to help counteract the side effects of the methotrexate. I was upset and numb at the same time. She explained that this disease is chronic with no cure, although some kids do grow out of it. Oh, the other concerns were about Zach’s eyes. Arthritis can cause inflammation in the eyes so we would need to take Zach to get eye appointments every 3-4 months to monitor that. Also, because the methotrexate suppresses the immune system we were to be careful about when Z got sick. She instructed us to watch having him around sick kids and to contact them before putting him on any antibiotics. Great, I would now have to become one of those overprotective mothers!! The good news was that Zach could continue the activity that he has done in past and that at least for now, the arthritis appears to be just localized to his right wrist and thumb. We were to get blood work done before we left so they could get some other data (not quite sure what all that means yet), start the meds and come back in 6 weeks to see what improvement has taken place. At the end of 12 weeks then we should see maximum improvement and then figure out next steps.

I think the full weight of this whole thing did not hit me until I was at the check out desk with the nurse. I was struggling with my papers and the woman offered me some paperclips and a manila folder. I appreciatively took them and thanked her. She then said to me, “you might want to invest in one of those accordion folders so you can keep all your papers together”. Oh my God. This is something I need to organize? I will get that many papers that I need to break out the big guns of an accordion file? Oh, shit, we are in this for the long haul, aren’t we? Z was a trooper about getting his blood work done and wanted to know why I was crying in the doctor’s office. I just told him I was a little overwhelmed with all the information. It was true. We walked in there as a happy, go-lucky family, and walked out with a diagnosis, 3 prescriptions and a recommendation for an organizational system! We took Zach out to lunch and Mike and I found ourselves eating comfort food, treating ourselves to dessert and everything that day!

The next few days were pretty bad. I could not sleep and I kept bursting into tears at work and at home. Mike and I talked about getting a second opinion, but soon realized that we were just in denial…going through the stages of grief for this loss that we were experiencing. Based on the reading that we both did, Dr. Toth’s diagnosis and treatment seemed right on the money. I was just SO nervous about the potential side effects of the methotrexate!!! I am very happy to say that Zach has been on the drugs since Oct 10 and he has really has had no side effects, aside from being a little bit more tired on Saturdays. I am SO GRATEFUL!! Also, his first eye appointment revealed that there was no inflammation in the eyes. He did walk away with some pretty cool glasses, however!

We have since gotten involved with the arthritis foundation. I found out about the Jingle Bell Rock 5K Run/Walk and signed all three of us up! Since then Mike has taken it to a new level, setting our team goal (The Ram Fam) at $2000!! We are only about $300 shy of it as of today so that is awesome. Thank you so much to everyone who has donated and/or joined our team! If anyone wants to join, you still can! We also bought tickets to an arthritis benefit in January called “Red and White on Thursday night” featuring wines and local chefs. I have checked out some blogs and hope to meet some other families that we can connect with and share support.

Our next doctor’s appointment is the week after Thanksgiving so I’ll post again then to keep everyone updated. Until then, keep movin’!