Still very busy here - now we're getting ready to go on vacation, taking our annual road trip to visit family. This year we'll be going to both Oklahoma and South Dakota. Lots of long miles, but we love these trips. We really enjoy camping in National and state parks across the country, seeing the sights, and finding cool out-of-the-way local food (ever watch Diners, Drive-Ins and Dives on the Food Network? We love that show and are planning to check out a few of their recommendations).
Even with all the stress and rush of preparing for such a big trip, I've been feeling really great. On my scale of 1 to 5 that I track, I've had a full week of straight 1's and haven't had a single bad crash day in over a month. So, I'm really looking forward to this trip.
My almost-14 year old son, Jamie, has been struggling a bit lately with lower than normal stamina and more sleep problems. He's grown tremendously in the past year - our relatives hardly recognize him when we see them! So, the doctor and I think he may be growing faster than some of his medications can keep up with. We had a wonderful visit with his pediatrician last week. She is just amazing, taking the time to cover every single aspect of CFS while we're there. She made some recommendations to try to help improve his sleep, and we're hoping that will help improve his stamina as well. He's still doing fairly well, just resting a bit more, so he and Craig are also looking forward to our vacation. All those miles in the car are actually pretty relaxing for those of us with CFS and keep us off our feet part of the day! We have a huge stack of audio books to bring along.
Hope you're all enjoying the summer and feeling good, too!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
What did you do to feel better? What medications do you take? I have linked to your blog by the way.
ReplyDeletewww.thingsweloseinthefire.com - reflections on a life with chronic fatigue syndrome
Hi. I am just ending the Valcyte run of 9 months and have started LDN. Valcyte did great things for me and I hope it continues after I stop it. I've not been on antibiotics at all this winter, not steroids. I had to reduce the LDN from 3 to 1.5 units due to the incredibly vivid and disturbing dreams with waking. Since I toughed it out for those first few days I must say the gradual change is remarkable. I really feel good! I keep waiting for the other shoe to drop.
ReplyDeleteIt's great to hear that you are enjoying the national parks with good health.
Would you consider LDN for a tween or a young teenager? I need more information. It does not seem to have been tried on younger populations.
To see details on what has helped me, take a look back at past blog entries - I've documented my trials and progress with plenty of detail. In the past two years, I've been most helped by Valtrex and low-dose naltrexone (LDN), and I believe the LDN has helped the most. Take a look at the blog entry on low-dose naltrexone for more information.
ReplyDeleteAs for kids and teens, I'm looking into that question myself. There haven't been any formal studies on LDN and CFS - for adults or kids - so there's little formal data. I have corresponded with several of the doctors who've been involved with LDN research, though, and I have collected anecdotal stories of kids who've been helped by LDN (e-mail me and I'll send you that after I return from vacation). I gave all that information to Jamie's doctor because I'd like for him to try LDN. The key doctor is Dr. McCandless, who has treated over 7,000 kids with LDN, mainly for autism but also a few with autoimmune conditions. She e-mailed me and said to tell our doctor that she feels LDN is VERY safe for kids, especially since it's used in amounts less than 10 times what is approved by the FDA. For more information, carefully read all the information and research studies at www.lowdosenaltrexone.org.
And, I'll keep you up to date on our own trials!
Sue