Saturday, September 10, 2011

Update on CFS Teens

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!

11 comments:

  1. One day at a time is my mantra too Sue and boy is this illness teaching me to live in the now. I was very moved by your previous post on grief and can totally relate to it even though my girl has only been ill for 8 months or so. Thanks for sharing what's working for your boys as always. The people we are seeing here seem quite convinced blood pressure is the main problem and it does seem to make some sense in our case. They want to try a kind of GET before medication anyway and I'm trying to very carefully manage it all so it at least doesn't make her worse.... It's all on my blog anyhow. Best of luck with your precious boys.

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  2. Praying for Jamie today!!! I pray for strength and that he can finish his senior year.

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  3. What is the dosing for florinef, if you don't mind my asking? Did you start at a low dose and work up? I'm finally going for a tilt table test this week for OI. I'd like to start some sort of treatment for it since the water drinking and extra salt in my food, while working somewhat, isn't enough. If you don't want to post it here feel free to email me. Thanks!

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  4. Great post Sue,

    Thanks for your comments on my blog, it's so nice to know that someone out there has faced some of the same issues.

    I have recently weaned off Florinef because my heartrate was still high on it and I was low on potassium (which is apparently a common side effecto of florinef) but I feel a bit like I've 'bottomed out' so maybe I need to stay on it.

    Grr this meds juggling is so frustrating.

    I suggested beta blockers to one doctor and they weren't keen but my other doctor is more open to that idea so will bring it up again when I seem them in a month.

    It's such a complicated illness.

    thanks again for your comments

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  5. Baffled -

    Yes, with Florinef you have to start low and work up. It comes in 0.1 mg tablets, so you usually start with a half, then after a week increase to one, then to one and a half, and so on until you get the positive effects you are looking for. A typical dose is 0.2 mg per day. My oldest son is on 0.3 mg per day which is on the high side, but it is what has kept him able to go to school all these years.

    Unfortunately, though, Florinef very rarely works well for adults. It is often very effective for kids and teens but onyl rarely for adults. Dr. Rowe isn't sure why this is, but he's seen this pattern over the years with hundreds of patients.

    If Florinef alone doesn't seem to do the trick, it is common to add on another medication, midodrine. The two work hand-in-hand. Florinef works by helping the body hold onto more salt and fluids; midodrine works by helping your blood vessels constrict more (2 separate but related effects of OI).

    Florinef will ONLY work when accompanied by HUGE amounts of salt and fluids. Its effect is to help the body hold onto salt and fluids so it can only do that if lots is present. It has worked well for my sons in part because they take salt tablets (Thermotabs) and Gatorade with it every day, plus lots of other salt and fluids with their meals. Just adding extra salt to your food isn't enough. If you don't like Gatorade, try V-8 juice or drinking chicken broth or broth made from bouillon.

    Also, see my comments below to the next question.

    Personally, I think beta blockers tens to work more effectively for most adults...but everyone is different! Again, you must start low on the dose - propranolol is the one most OI experts recommend for CFS patients.

    Good luck!

    Sue

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  6. Kiwichat -

    See my response above to Baffled regarding Florinef for adults, needing lots of salt and fluids with Florinef (it won't work without that) and the use of midodrine in addition to Florinef.

    Also, yes, Florinef is known to deplete potassium but that is easily remedied. Dr. Rowe prescribed potassium supplements for any patient on Florinef. Potassium chloride is available by prescription. The dosing he uses is 1 10 meq potassium chloride pill for every 1 0.1mg Florinef pill. It's a simple fix that solves the problem.

    As for beta blockers, it's actually a very safe, simple fix that often works very effectively. Most experts in CFS and OI recommend starting with a very low dose of propranolol. The advantage to propranolol is that it is short-acting and available in very small doses, so that it is very flexible (i.e. you can easily adjust the timing and dose to your own needs). When I asked my family doctor about trying beta blockers, she said, "That's an easy one! It's a very safe drug that has been around for decades."

    Others with CFS have had success with other beta blockers - there are lots of options that might require a bit of trial and error to find the right one for you. So, don't give up! If one thing doesn't work, change the dose, try a different med, etc. There are so many effective options for treating OI, and it can make a huge difference in how you feel and what you can do.

    Feel free to e-mail me is you have any questions or need info to show your doctor.

    Sue

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  7. Thanks Sue! You are such a fountain of knowledge. I'll let you know how things go Thursday and if they put me on the beta blockers. It would be wonderful to get a bit more mobile. Thanks again.

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  8. Anonymous5:51 PM

    Dear sue,

    I am a 21 year old with chronic fatigue and my doctor has suggested propranolol but suggested 40mg a day. From what I've read, including your wonderful blog, this seems to be too high, I know everyone is different and has different reactions but roughly what would you recommend to start off on?

    Thank you so much, I hope you don't mind the questions!

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  9. Hi, Anon -

    When I first read your note, I thought you meant 40 mg per dose which might be high, but 40 mg per DAY is probably close.

    Propranolol is short-acting, so you need to take it more than once a day. Some people don't like the inconvenience, but for me, I love the flexibility. I need a bigger dose first thing in the morning, then less later on in the day. I like that I can take as much as I need each day...so for instance, I am normally resting in the evenings, but if I have something planned - going to my book group or out to dinner, for instance, then I will take an extra one around 5 pm.

    So, I have 20 mg pills. I usually take 2 as soon as I wake up in the morning. They usually take about an hour to fully kick in (so I have learned to wait to shower until my HR comes down to reasonable levels). Then, I normally just take one more with lunch...unless, as I said, I have something going on later in the day. My doctor prescribed it this way for me specifically so I could tailor it to my needs.

    All that said...many people with CFS DO react strongly to even small doses of meds and have to be very careful. I happen to not be one of those people, but if you have reacted strongly to meds in the past, then you might want to start lower and see how it goes. Also, too much beta blocker can cause fatigue, so you're trying to find the right balance for YOU between bringing your HR down to manageable levels and not too high to cause fatigue. For me that's at the levels I explained above - a little trial and error (be pateient and persistent) should help you find what's right for YOU.

    Good luck!! Propranolol has literally changed my life - I'm able to be much more upright and active now. Let me know how it goes!

    Sue

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  10. Hi Sue, fantastic blog!!! I am currently looking for different easing treatments for myself (obviously not a cure because they do not exist...yet ;)) and i firmly believe IV saline would be greatly beneficial to me...the only trouble i have is how to go about asking for them...because it is not a standard treatment, and im not sure how badly rejected i would be from asking for it to happen really....so my question is what process and fighting did you go through to receive this type of treatment (or rather yourself and your son.) i hope you are all doing well :) xxx Ione xx

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    1. Hi, Ione -

      Thanks for the kind words about my blog!

      We really didn't have any fights to get IV saline. Among CFS experts, it is a well-known treatment. The CFS doc we see (Sue Levine in NYC, an ID doc) wrote us a letter requesting IV saline, with the details (amount, timing, etc), so we could find someone to do it locally. We already knew other kids with CFS were getting IV saline at a local urgent care clinic which is run by a great doctor, so we went there. Each week, they took Jamie's BP, HR, etc. before and after the saline and faxed the results to Dr. Levine. Insurance covered it as regular visits to the clinic (normal co-pay). That was it.

      I suggest you begin with your current doctor(s) and just ask. Perhaps bring along some of the articles that recommend IV saline for CFS.

      Good luck!

      Sue

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