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A new pediatric rheumatologist started in Maine this month, this is very big news for Maine and very big news for Troy. To have access to a doctor who knows about DM, specializes in illness such as DM and most importantly who specializes in children. I feel very fortunate to have access to a doctor in my own home town….. that alone deserves a round of appluas.
As much as we looked forward to meeting this doctor we also had lots of apprehension, would he look at our file and comments from his associates and put us in the pile of difficult patients, would he listen to us, would he respect us, would he recognize treatment is not one size fits all, most importantly Would He Listen To Us.
By the way a difficult patient can also be translated into a mother who advocates strongly for her child.
He was all the things we wanted and hoped he would be, BUT no he is not perfect, he recommended to the typical regiman of prednisone, methotrexate, rituxan, etc… He made some very good points about this regimen, he didn't talk at us he talked with us, he listened, we listened. It felt so good to make a connection with a doctor, we need him on our team, desperately. I didn't want to have to grit my teeth and play nice, I want what is right for my son and I want a doctor who is willing to be part of the team that treats my son, not the know it all who dictates to us, with a my way or the high way attitude. We found a good match. This appointment took place one day after Troy's seventh annivesary with DM. It was about time.
After a two hour appt Troy and I left with all the information he had to offer, he asked us to take two weeks to think it over, we saw him last week on the 23rd and this is what Troy told him with out any persuasion on my part (my favorite part)
Quoting Troy “I am not against or in favor of using methotrexate and prednisone, I've seen how it makes me feel, I know what that process is, if I have to return to it because I have no other options then I will. When 2009 started I was hitting my worst case scenario of symptoms, I know how bad it gets, I know what that feels like and looks like, I never want to be in the place again, if it means going back on prednisone and methotrexate to prevent that from happening then I will, BUT since April I have been taking antibiotics and my cyclosporine, and I have had improvements, some slow improvements and some small improvements but still improvements. I have been able to have these improvements without the meds that you are recommending. As long as I can continue to show improvements I will stay on this course. I don't know if it will work but right now it is, maybe slower then we would all like but it is still working. I would like you to work with me even if you don't support this idea and agree to give me two months at a time. If I come back in two months and my symptoms are worse then they are today, we will do what you recommend, if I come back in two months and I have had improvements, small as they may be then I would like you to agree to give me two more months.”
they made an agreement, we return to see him the first week in December
BIG SIGH :roll-laugh:
In Maine the weather is getting colder and it is already starting to show in Troy's body, the stiffness, achiness, fatigue, but it is all par for course when you live in such climates.
The doctor did add to Troy's DM, arthritis in both hands and knees, it is very disheartening when you are only 13, what will it be like in 20, 30, 40 years for his body, god willing it will be better then it is today.
Troy can't be physically active like his peers, all he has is his art, what happens when his hands get so stiff and sore that doing his art becomes an issue? Hopefully we never have to cross that bridge.
Troysmom,
What an inspiring story….and what an amazing boy you are raising! To be able to advocate for himself, at that age, with such maturity, is a credit to you both.
I bet the doctor was taken back by such wisdom in a child. Now go Troy, and show him what AP can do!!! Here's to REMISSION!
Troysmom, what a great update. Your young man is such an old soul, it really sends tingles down my spine when I read about him – thanks so much for sharing and please send him big hugs!
You never know, you may have an AP doc in the making there! I hope so, but more importantly, I hope Troy will continue to reap these small steps forward in his progress and that it won't even be a question in a few years, or 10, 20 or 30 years down the road. By then, he will be an accomplished artist, sharing his healing art with the world!
You're a great Mom, Troysmom…hang in there!
Peace, Maz
PS Have you considered sauna for Troy to help him through the winter months? Kim is a great advocate for it and can tell you more or you can do a search in the box above on “Infrared sauna.” There are some very reasonable portable versions out there.
Hi Troysmom,
Great news about the new doc. I always look forward to hearing updates on Troy. Would he consider posting some of his artwork?
Also, do you track CPK blood work to see what is happening in the muscles?
TIschGeez Louise, I teared up again at this post. :crying:
Mom, you have raised one exceptional kid! No question, his approach to “work with”, not be “dictated by,” this new doctor should be studied by all of us. I was thoroughly impressed and I have to think the doctor was too. If your son can turn the head of one doctor he will have accomplished more than me. 😉
Please convey to Troy that he is not only helping himself, but many others with his unbelievable strength.
Take care…….kim
Hi Troysmom,
Wow, I love reading your updates about Troy! He sure told the doctor what was what didn't he. He just didn't give him any room to say no. How fantastic!
As for how he will be in twenty years time, try not to worry too much. I've had the RA since I was 15 and now I'm 36 and I'm still going. I haven't had a single joint surgery yet, despite having had very poorly controlled arthritis all these years. I am looking after my two young sons and running a family business. Troy is intelligent and will make sure he gets the right treatment. Having his positive attitude and knowing all he does about his condition will mean that the disease will take less of a toll.
And besides, he's going to be cured by AP within two years, I'm sure of it! 😀
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