View Full Version : Getting older
07-09-2004, 04:02 PM
Jacob has had his trach since he was 5 weeks old - 2 years, 5 months ago. There were times when we were suctioning what seemed like non-stop. He has always had lots of secretions. However, the past 6 months or so, he has done really well with handling his secretions and hardly ever needs suctioning. Normally I only suction after nebs. I am not complaning by any means. Just wondering if anyone else's child has had a decrease in secretions as they have gotten older?? Even with our spring/summer months, which have always been the worse for Jacob, he is doing very well. And, before, when he didn't need much suctioning, it usually meant that he was dry. But, he isn't now.
07-09-2004, 08:25 PM
We too have noticed that as Mason has gotten older his secretions have decreased. They have decreased even moreso now that we have recently changed his diet. By the way , Jacobs Mom, we are still awaiting our x-linked MTM tests from Chicago. Hopefully soon. Can you refer us to some good MTM boards?
07-09-2004, 11:06 PM
There are a few great sites. The first one, which has tons of info (where I got most of mine) is MTM resource group (http://www.mtmrg.org). It has great info and lots of affected family stories. The other, which is owned by Jack's Mum, is www.myotubularmyopathy.org (http://www.myotubularmyopathy.org). It has much more recent info and a discussion board. There is also a Yahoo! Group at Yahoo mtm group (http://groups.yahoo.com/group/myotubular_myopathy/). It is pretty active and there are just awesome people there.
I hope this helps. Please let me know when you get the results.
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