Look how beautiful Trip's fingers are!! (The scar on his index finger is where they biopsied the Gottron's papule.) The first picture was taken on July 28th of this year and I took the 2nd one today. We were told that it could take several months or longer to see significant improvement in his skin but we're overjoyed to already see these results. The Gottron's papules are now hardly visible after 2 1/2 months on Plaquenil and 2 months on steroids and chemo. Yay!!
Trip's appt. with Dr. Pachman last week went well. He was evaluated again by the physical therapist and his CMAS (Childhood Myositis Assessment Scale) went up 3 points from 39 to 42 out of 52. The majority of this improvement was in his legs. His neck seems to have improved slightly but is still weak. He can lift it for about 2 seconds so we still need to take precautions to protect his neck from injury.
When Dr. P came in the room she said, "Wow! That's a different kid." She could immediately see the improvement in his facial rash and eyes (and probably that he's put on some weight though she was kind enough to not mention that). She did want to add a daily regimen of Singulair to his meds. At the time, Trip had the sniffles and appeared to have some allergies brewing which of course could lead to infection if it's persistent. Also, a new study by Pachman has shown that a regular allergy med also improves skin symptoms of JDM. I haven't actually started Trip on the Singulair yet though because a friend recently mentioned that their ped had just taken her son off Singulair as they've found that it gets into a child's brain and we're not exactly sure what kind of long term probs it could cause. Therefore, I'm investigating that and will talk to Dr. P to confirm that it's absolutely necessary. His sniffles have now cleared up. Oh, and speaking of putting on weight, Trip has gained about 3 lbs which is alot considering that the entire previous year before treatment he'd only gained a few ounces. This is a side effect of the steroids so we pray that this will slow down since he has a ways to go on these meds.
Trip is still getting weekly infusions of Solumedrol and methotrexate every Friday in Day Medicine at Arkansas Children's Hospital and likely will continue to do so for another 18+ months. We now, over the past 3 or 4 weeks, have had a regular nurse, Henry, which has been a huge blessing. Trip still struggles with the port access but it's much easier and comforting to have a familiar face every time that knows us. The treatments are still taking much longer than we'd like. We're usually there 4 or 5 hours for a 1 hour infusion, but we (myself, Henry, and the Day Med staff) are working together to figure out how to make it quicker and easier. This week we're going to try going at noon instead of 8 am. Henry is the only full time chemo certified nurse on staff in Day Med and he leaves at 3 on Friday. So, we hope that means that we'll be there no longer than 3 hours since Henry has to give the methotrexate before he leaves. We've spent hours looking into using home health but continue to hit obstacles. Insurance will cover the cost but finding a chemo certified, pediatric home health nurse is apparently impossible. There is a local company that has chemo certified pediatric nurses but they don't see children under 8. I had hoped to just push the methotrexate myself through his port but no chemo certified nurse will train me on how to do that for fear of losing their license if something went wrong.
It occurred to me today that we never heard the results of the muscle biopsy done in July in Chicago. I called their office and it turns out the results just came back today. Dr. P will call me tomorrow to explain the findings. We've also recently had a celiac panel and some other celiac related tests run which I haven't heard the results of yet. I read several stories of JDM children who went into remission with treatment and then quickly relapsed only later to figure out that they had some type of food sensitivity (gluten, soy, eggs, or dairy) that was triggering the disease. Once they eliminated the food trigger they stayed healthy. So I requested that Pachman go on and run the celiac tests (this just test for celiac disease not gluten intolerance). If those come back negative, we're going to order a lab test on our own that's much more sensitive and broad to include other foods besides gluten. I just figure we should go on and rule those things out as being a trigger.
While we were in Chicago I heard that there was another patient from Dr. Dare's clinic here at ACH that was coming to see Dr. Pachman! I gave Dr. P's assistant my name and number to give to that family. I was so excited today to get a call from Shanna, the mother of 2 yr. old Christopher from Jonesboro. Their story was so very similar to ours so I felt an instant bond with this mother and could completely relate to the anxiety she's feeling right now each and every day as her little boy goes without treatment. They are going to Chicago next week to see Dr. Pachman so I pray that they will see quick improvement for their child like we have. I assured her that they will be so glad that they went. Their poor child has been through much more testing than Trip was put through but still haven't received an official diagnosis of JDM since the findings are all clinical. Oh, and I almost forgot, I was elated to hear that Dr. Dare had actually suggested that they go see Dr. Pachman. I assumed that Shanna and her husband found her themselves but Dare had been the one to suggest it. I was so touched and grateful to find out that our long journey has likely helped another child and family suffering from this disease. Our God is a Mighty God!.... I know Shanna and I will be in touch and I hope to get our families together soon.
Our recent prayers are this:
1. That we'll find a way for the weekly treatments to be quick and easy and less of a burden on the family (I know all things considered being at ACH 5 hours a week isn't so bad but it would be a blessing to get that time down)
2. That Trip's strength will continue to improve, especially in his neck.
3. That his weight gain and and all side effects from the meds will get under control
4. That our new friend, Christopher, will have a positive, productive appt. with Dr. Pachman and that his family will finally get all the answers they've been searching for.
Thank you, for your prayers and on-going encouragement!
