I am going to write about the past weekend events in section as to put all into one post would make for a lot of writing and information.
On Saturday, June 20, at the CureJM Conference were break out sessions in the morning and then sessions with Dr. Rider and Dr. Pachman in the afternoon.
Dr. Rider talked about Muscle Involvement and Physical Therapy which was very interesting and which brought me face to face with a Doctor again who we admire tremendously! We met Dr. Rider almost three years ago in Washington D.C. for the JDM Twin Research Study. She asked me how Connor was doing and when I told her about Connor's still stand in his tightness in his legs she right away told me we should come back to D.C. and see her as she thinks more can be done...
I was so grateful for her warm and friendly embrace and we had a few laughs as well 💙
The new Research on her end is focused as in part hw exercise can benefit but also which exercise needs to be avoided. Benefitting are Swimming, Yoga and any low impact sports.... The important part is to use the muscles but to not stress them. The ones to avoid are high impact Sports as in Karate, Football, Skiing and for example Jumping Robe on a Cement Floor. Another huge no no is Roller Coasters...
Then came the session with Dr. Pachman. She talked about the progress made in Research and also how the money raised from CureJM (this is were your donations went and are going :) are being used.
They found out the four trigger points for JDM/JM as in:
Trigger points are Stress, Antibiotics, Sun and Vaccinations
Ron and I knew pretty much what has been Connors trigger points. The first obvious one was the Vaccination as in the H1N1 Flu Shot Connor received in November 2009, and then we are guessing the second trigger was Stress when Connor had the Meltdown at the JA Camp last year in Estes Park. He had a Flare right after and since we don't think te sun and antibiotics where involved during this time we are sticking with Stress.
It felt good to see those points out in the open as I know many find the vaccination issue very controversial.
Also with the money a Nutritionist was hired for the program and I love the fact that the impact of food is also now being considered. Many of us know there are foods that are antiinflamatory so why not utilize this or our children.
More good news came in regards to two new Research Programs being opened by Dr. P. She is now as well doing a Twin Study as well is looking for patients with JDM/JM that are now between 40 and 50 years old.
Now when I first entered the session I had Connor with me who had left the playroom to see Dr. Pachman. We had just gotten thru the door wen we saw her sitting all across the room in front of the stage. Connor took of running as fast as he could and yelled 'Dr. Pachman....Dr. Pachman!!!!' He have her a huge hug and it was such a joy to see Connor next to our Hero!
She said she had no idea we would be here and was right away asking me if we would please enter her Twin Research Program. I asked her when and she asked if we could come in Monday morning. So after texting Ron and talking to him I made plans to spend an extra day in Chicago with the boys.
On Monday we arrived nice and early at 8:45 am and were promptly called in for the nail fold picture taking for both our dumplings. After this Connor was weight and measured and we were brought to a room for Connors PT assessment. Here Connor showed he improved by 1 point on the CMAS Score, up to 49!
Then came Dr. Pachman's assessment and while I thought she be happy at the improvements Connor had made she instead pointed out several things that needed to be addressed. First she said he needs to be back in Physical Therapy as the tightness in his legs should not be satisfactory for us. Then she said he needed his Thyroids checked and needs to have an eye exam every 6 months.
At the end she told me she wants to see Connor back in Chicago at least once a year but preferable every six months again.
We then had to go to the Lab to have both boys blood drawn. Lets just say Alexander had a very hard time with that one so a Child Life Specialist came in to help the boys through it. I truly or got what a huge heart and kindness everyone in Chicago had! They truly know how to get kids over their fears!
So and today on my way home from Texas I received a phone call from Dr. Pachman's Office to have me schedule an appointment for Connor for November. So I guess we will be back in ChiTown around November the 11th.....
More to come about this past weekends events but this was my view from the medical end.
Hugs,
R A C A
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