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Update on CFS Teens

Posted Sep 10 2011 10:58am
OK, that's a weird title, but I couldn't think of anything better!  Both of my teen sons have tried some new things this week, and another friend of theirs as well, so I just thought you might be interested to hear what is helping so far.

As background, both of my sons have had ME/CFS for the past 7 years.  Craig, now 13, has a mild form of CFS that is completely controlled with Florinef (a treatment for Orthostatic Intolerance , a condition that affects more than 97% of CFS patients).  With Florinef, Craig is symptom-free about 95% of the time and able to do anything he wants.  Jamie, 17, has more severe ME/CFS, plus was diagnosed with three tick-borne infections - Lyme, Babesia, and Bartonella - 15 months ago (the infections have possibly been there for as long as 5 years).  Before Lyme, Jamie did fairly well on Florinef - it allowed him to attend school mostly full-time.  He has struggled for the past 4 months as a result of herx reactions from his treatments for tick-borne infections.

Craig has been doing so well that he wanted to try reducing his dose of Florinef this summer.  He normally takes 0.15 mg a day (one and a half tablets), so we reduced it to just one tablet (0.1 mg) a few weeks ago.  He seemed to still do well - slightly longer recovery time after sleep-overs but otherwise he seemed fine.  Then school started last week.  Between school, soccer practice, homework, and physical therapy for a knee injury, Craig was wiped out.  He had been sleeping 12-14 hours a night during the summer (!), and could only squeeze in 11 hours a night on school nights...and that's with going to bed at 8pm.  So, after seeing him struggle this week, we increased his Florinef back to his usual dose of 0.15 mg on Thursday.  I also increased him from  half to a full salt tablet (Thermotabs) and made sure he had a water bottle with him (he used to drink a liter of Gatorade a day but got sick of it).  Wow, what a difference!  Thursday evening at dinner, he was full of energy, smiling and talking...in other words, his usual exuberant self!  So, we discovered this is the right dose of Florinef for him, at least during the school year.

We've started two new things for Jamie recently.  We added a new medication, clonidine, to his regimen.  Dr. Rowe thought it might help with sleep, OI, and also secreting more growth hormone, as I explained in an earlier post .  Jamie already takes trazodone and nortriptyline to correct his sleep dysfunction , and they were working fairly well until he hit this rough period recently.  So, he took a half a clonidine for one week, then upped it to a full tablet last night.  It's hard to say yet, but we think it is helping.  Jamie said he woke up fewer times during the night after starting it, and he seems better able to sleep later in the morning (i.e. 7 am instead of 6 am).

Jamie also got his first weekly saline IV this Thursday, as I described in my earlier post .  Saline IVs can help people with CFS by increasing blood volume, which improves the symptoms of OI, thus improving just about all of the symptoms of CFS, especially energy and cognitive dysfunction.  Administering the IV went well.  Jamie was well-hydrated ahead of time, so the doctor started the IV easily.  Jamie got 1 liter (we may increase it later), and it took about an hour.  He saw some immediate improvements.  He slept much better that night - said he barely even remembered waking up at all and didn't get out of bed once during the night (amazing!).  He went to school on Friday - third day in a row this week - and said he had more energy than he'd had in weeks.

The problem with saline IV therapy is that its effects are only temporary.  Today, he is worn out and doesn't have much energy.  He just decided he won't try to play in his soccer game this morning.  However, he's not totally crashed - he is working on his homework right now and is still in very good spirits.  He's just being cautious and is hoping to save up enough energy to maybe have a friend over later.

A good friend of ours, a local 15-year old boy with CFS who also attends Jamie's high school, also got his first saline IV this week with about the same results.  He was able to go to school the next day but not the second day after (he is not usually able to attend school as much as Jamie).  Both boys may eventually work up to 2 liters IV infusion at a time, which is what Dr. Rowe (expert in OI, especially teens with CFS) does with his patients.

So, it was definitely a better week than the previous one.  Jamie made it to 3 out of 4 days of school, which was great after how sick he's been recently.  He seems to have finally recovered from the oral surgery he had last Monday.  We'll see how the coming week goes.  My husband and I keep reminding ourselves...one day at a time.

Have a good weekend!
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