But today's post isn't about me; it's about our 17-year old son, Jamie. I've mentioned a few times recently that he's had a really rough summer. It appears to be mostly due to herx reactions from his treatment of Lyme disease, plus two other tick-borne infections, babesia and bartonella. Whatever the reason, the bottom line is that he has spent most of the summer lying on the couch in our family room, reading and watching TV. He got his full, unrestricted driver's license this summer, but he barely drove at all. He hardly saw any friends all summer either.
So, my husband, Ken, and I have been extremely worried about school starting next week. The anxiety has been building because in his current state, there's no way he'd be able to attend school full-time as he has in recent years. This is his senior year, so we have the added pressure of applying to colleges. We've been visiting them this summer, all the while wondering how on earth he'll be able to manage it.
Another source of anxiety was his annual check-up with his pediatrician last week. Jamie has only grown a quarter inch taller in two years and moved from the 90th percentile for height (where he'd been consistently since birth) to the 50th. It's been proven through research that people with CFS generally secrete less growth hormone (GH) than healthy people because GH is secreted durng deep stage 3 and stage 4 sleep, of which we rarely get enough. So, all this anxiety has been building, and we've been dreading the coming week when school starts again.
We are all feeling a lot better now, though, thanks to our visit to see Dr. Levine in NYC on Friday and some e-mail correspondence with Dr. Rowe. Both of them have been immensely helpful! This was the first time Jamie had seen Dr. Levine, though I have been her patient for about 5 years. She's an Infectious Disease doctor who specializes in CFS and is on the CFS Advisory Committee for the Department of Health and Human Services. I decided to take Jamie to see her because most of the treatments that have helped me the most have come from her. We left with a whole list of treatments to try for Jamie, to help to control his out-of-control symptoms (mostly aches and exhaustion) and try to improve his stamina:
- Dr. Rowe suggested we try a new medication, clonidine, that is OK to take with Jamie's current medications and, if it is tolerated, can potentially help with sleep dysfunction (in addition to his current treatments for sleep dysfunction which help though he is still not getting enough deep sleep), Orthostatic Intolerance (currently treated with salt and Florinef though again he's gotten worse lately), and can help the body to secrete more growth hormone as well. A triple bonus!
- Dr. Levine agreed to start him on weekly saline IVs. This is becoming a common practice, particularly with teen patients, and is something else Dr. Rowe frequently does. The IV usually has an immediate positive effect, increasing blood volume much more effectively than just drinking salt and fluids and improving OI, thus improving most other CFS symptoms (many of which result from OI). Another local friend who goes to school with Jamie is starting the same thing next week, so his parents have already paved the way for us and found a local doctor willing to administer the IVs. Obviously, this is only a temporary effect, but from what I've heard form others, it can really help for a few days afterward.
- Dr. Levine will probably also start Jamie on low-dose naltrexone (LDN) which has helped me quite a bit. This was the #1 thing I wanted to ask her about for Jamie and was her first suggestion, so we were both on the same page with that one! She took blood for lots of tests on Friday, but Jamie's previous tests a few years ago showed very low Natural Killer cell function, which LDN can help with.
- Finally, she will call us when his blood test results come in to discuss whether those present any additional treatment opportunities.
So, all of this has reminded me of a couple of truisms that I seem to keep relearning over and over again. One, that it's always best to get things out in the open and talk about them. And, two, that the best approach to CFS treatment is to persevere and keep trying. If one thing doesn't work, move onto the next...try, try again. Despite what we sometimes hear, there are actually lots of options for treating CFS, even though we don't know its cause yet. Different things work for different people, and we just have to keep trying. To that end, I will write the post I have been promising, about what has worked best for me and allowed me to be so active this summer. With school starting this week, my writing time will increase exponentially!
Even the hurricane this weekend worked in our favor. School has been canceled for Monday for my youngest son, pushing back the day when Seniors start to Thursday. This will give Jamie an extra day to recover from oral surgery (assuming it's not canceled tomorrow). He's having all four wisdom teeth out. Fortunately, it's being done in the hospital, so he'll get IV fluids (he may actually feel better than he's felt in weeks, other than the pain in his mouth!).
Hope is a powerful thing.