May has been an overwhelming and worrisome month. There was a two week period where my mind just ran with worry and fear. Dealing with our journey is a lot to think about. It's hard waking up everyday knowing that someday your child is going to have struggles that your powerless over and will just have to sit back and watch. I really think it would be nice if I had a switch that I could just flip and my brain would shut down. I grin right now because just saying those words sounds so relieving.
Logan's follow-up appointment with Dr. Rybalsky on April 3rd went well. For the most part we received positive feedback. His CPK test came back at 25,005 (normal range 75-215). Just in case you don't remember the CPK test is a blood draw that shows the level of muscle wasting and will fluctuate with activity. His current CPK level is not the highest it's been but also not the lowest. The rest of the blood work came back normal except for his calcium level which was low at 8.7 (normal 9.0-10.1). All of Logan's timed tests have improved since his last follow-up appointment. This shows that his daily dose of steroid is doing its job. I have noticed some positive effects with some of his physical capabilities since he has started the steroid. He is able to hop a little higher and if he is taking a running start man can he jump. It's really cute watching him because he gets great joy and happiness from being able to jump. It is written all in the smile on his face. The only new struggles that have come from this follow-up appointment is Logan is beginning to have some tightness in his arms and is in the beginning stages of osteoporosis. The plan for Logan is to continue the daily steroid, vitamin D3, and multivitamin. He will also be starting a supplement called CoQ10 to help with his energy level. We have added more dairy to his diet in order to naturally get his calcium level up. We will continue with Logan's daily stretches and he will continue to wear his night braces. The osteoporosis will be monitored, it's not severe enough where they would like to start him on a medication. Then we will follow-up in 6 months.
On May 10th Logan had an echo cardiogram, a EKG, and his new patient visit with cardiology. This appointment was stressful. I left feeling sad and scared. The echo cardiogram came back showing a rounded left ventricle. We were told the heart should be in the shape of a bullet and Logan's is rounded on the left side. The doctor we seen drew a picture of what Logan's heart looked like from the echo. My thought to her drawing was, "Wow, that's big." We were told that what they are seeing from his echo is normally not seen in Duchenne boys this early (referring to his age). The EKG came back showing an irregular heart rhythm on the right side of his heart. The plan leaving this appointment was Logan to be placed on a holter device to monitor his heart for 24 hours and to see Logan back in 6 months to have a cardiac MRI. We have not received the results back from the holter device. It takes about 3 weeks to get the results back. I'm anxious to see what this test brings back. When I got home from this appointment I started researching trying to find information on what is going on with Logan and what they were talking about. The cardiac disease that runs in Duchenne boys is called Dilated Cardiomyopathy. This is were the left ventricle becomes enlarged and weakens the heart (cardiac) muscle, preventing it from pumping blood efficiently. If you are interested in reading about the disease you can click on this link for more information:
http://www.parentprojectmd.org/site/PageServer?pagename=Advance_funding_programs_cardiac
On May 16th I had a cardiac MRI and my carriers clinic appointment with cardiology. All of my tests came back normal. I was extremely relieved. I was really worried after hearing about Logan. I thought for sure my heart would be effected as well since we are missing the same exon 46. Then I would be put on cardio medication which in return would put bruises all over my body. This appointment was a pretty relieving appointment. I was able to see Dr. Jefferies. He was not there for Logan's appointment on May 10th so I asked him questions regarding Logan's test results and he told me at this point he thinks everything is good and we should not be worrying. How confusing, right? I left feeling relief but today I still feel confused on the mixed information. So I have emailed Dr. Jefferies asking him this:
We spoke last week when I was in for the carrier’s clinic about Logan
Behrend DOB 5/31/06. I wanted to ask this specific question so that I had a
clear answer on what is going on with Logan. Is he in the beginning stages of
Dilated Cardiomyopathy? We discussed at this point I do not need to worry and
you think that he is good. At our initial appointment on May 10th I was told
that what was seen on the Echo cardiogram is not seen in DMD boys this early. I
was told what they saw was a rounded left ventricle (not bullet shaped). The
doctor drew a picture on the board for us of what the image looked like and she
drew it in a way that showed the left ventricle enlarged. After doing some
research on Dilated Cardiomyopathy, what we were told at our initial appointment
sounds like Logan may be showing signs of the Dilated Cardiomyopathy. I’m still
feeling a little confused on the mixed information and would like some clarity.
We were also told at our initial appointment that boys with DMD are normally
seen every year but with what they are seeing with Logan he would need to be
seen every 6 months. Which to me says red flag. I’m anxious to hear back about
the holter test. If that comes back showing abnormalities will we do the MRI
sooner than in 6 months?
And what about the EKG which showed that the right side had some irregular
heart rhythm? Any information regarding that?
Thanks a lot for your help and time to answer the questions that I have and
for me to get clarity. I really am one that likes to have information straight
forward. I really like to hear things just the way it is. So any information
would be really great.
Thanks,
Angela I'm still waiting on a response from Dr. Jefferies once I recieve a response I will be sure to update. Please continue to keep Logan and our family in your prayers. We sure need all the hope we can get.
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