Sunday, July 4, 2010

An Update on Trip

Last Thursday evening, after the official diagnosis had been made, I joined the parent's discussion board on CureJM.com and spent hours just reading about other parent's stories and questions and answers between parents of kids with dermatomyositis (from this point forward I will be abbreviating this to JDM. Schwew! That word is a doozie!). What I consistently saw were parents recommending to other parents that they should take their child to see Dr. Lauren Pachman in Chicago. Some even said things like, "We wish we had seen Dr. Pachman sooner. Her treatment plan quickly changed the course of the disease and our child may not have had to suffer so long had we gone sooner." I shared this with Rex and we both agreed that we should go on and try to get an appt. for Trip in Chicago- not only for Trip's sake but for us as his parents. We could have the peace of mind knowing that he was seeing the expert and would be getting the best possible care.

Because the disease is so rare, there aren't many doctors who have a lot of experience with it. I think our pediatric rheumatologist here at Arkansas Children's Hospital is doing the best he knows how to do with the limited experience that he's had with JDM. I haven't asked how many JDM patients he has yet, but I'm guessing that it couldn't be more than a handful or 2. Dr. Pachman is one of the world's foremost researchers and top experts on this disease. Her practice is dedicated to JDM children and she has seen hundreds of these patients.

So, the next morning (Friday, June 25th) I called Dr. Pachman's office in Chicago to make an appt. for Trip, explaining that he was a newly diagnosed JDM patient. They penciled him in for July 19th while they started the process of getting copies of all of his records from ACH. The following Tuesday morning (June 29th) I got a call from Pachman's nurse just saying that they had received Trip's records (kudos to ACH for that speed!) and needed to ask me a few questions before they confirmed the appt. In my conversation with the nurse I discovered a couple of things that made me a little uneasy about our current plan of treatment with Dr. Dare. First, we chatted about Trip's MRI. I said that it was normal accept for some findings in his buttocks that my dr. didn't think were of any significance. He said that something in the legs would be consistent with JDM. She explained that that was actually what they were looking for on the MRI- a symmetrical abnormality in either the leg or buttocks. Hmm? (I've since then gotten the CD of the MRI and the finding in his butt is on both sides) Then I asked her if I should continue to give Trip the Plaquenil or hold off until we saw Pachman in a few weeks. She said, "just Plaquenil? I've never heard of a patient only being on Plaquenil." Ok. I began to slightly panic. Clearly, our current plan of action wasn't aggressive enough but I didn't want to contact Dare with my concern. I wanted Pachman to be the one to decide how to treat Trip. I decided that all we could do was pray that his condition didn't worsen before the 19th.

Then, 5 minutes later I got another call from Pachman's office in Chicago wanting to know if we could be there next week, July 7th (they're only in clinic on Mons & Weds, completely booked on the 30th, closed for the holiday on the 5th). Dr. Ibarra, the fellow, had just reviewed Trip's case, and thinks he should be seen ASAP. She said that this disease has been brewing in him for quite some time and that he should've been diagnosed months ago. Also, that she wasn't comfortable at all with him only being on Plaquenil. Thanks God! Someone that recognizes a real problem and wants to proactively do something about it!

Meanwhile, I've been reading the book "Myositis and You: A Guide to Juvenile Dermatomyositis for Patients, Parents, and Healthcare Providers" partially written by Dr. Pachman. A sentence in the book jumped out at me last night: "Skin disease in JDM is associated with inflammation of blood vessels and should be treated as aggressively as muscle weakness with both systematic medication and topical agents." From reading this book I've gathered that he'll probably be put on an intravenous corticosteroid and methotrexate as this seems to be the preferred treatment at diagnosis. They may want to put in a port-a-catheter to make administering these drugs easier since he is so young. I'll update after we see Pachman on Wednesday..... as of now, not sure how we're getting there. Round-trip plane ticks to Chicago are now $500+/person. We may be making a quick 2 day haul to and from Chicago via Honda Odyssey. Ugh!

5 comments:

Carina said...

I'm thankful you can see Dr. Pachman so soon! What a blessing. We are praying for Trip and the appointment next week.

Areta said...

I will be praying for you guys today and especially tomorrow!

Cathy said...

Hi Stephanie,
I am remembering you and your family to God--so sorry, but grateful you are using all your gifts of intuition and advocacy to make sure Trip has the best care available. Stay the course!

Kerri said...

Hey Steph! Saw this and wanted you to know we are thinking about you, Rex, Ruby and TRIP!! Keep us posted on the trip to Chicago and know there are LOTS of people praying for you guys! XO

Madeline's Juvenile Dermatomyositis said...

Steph - I'm a mom w/ a little girl w/ JDM. She is doing wonderfully and I just want you to know there is hope and many successes with this disease. I've been in your shoes and I know how you are feeling. You are welcome to read Madeline's JDM blog I started after she was diagnosed. Start from the beginning...to current. It will give you hope. I promise. If you ever need to ask questions, talk, please do so. Here's our site.... Madelinesjdmstory.blogspot.com

Charla :)