Parenting a Child with ME/CFS

Is there any worse pain for a parent than seeing your child suffer?  It just tears your heart apart, especially when there is nothing you can do to help.

As you know, Jamie, our 17-year old son, has been going through a very difficult time lately, probably due to reactions from his Lyme and babesia treatment.  He missed the entire week of school last week.  He finally started to perk up a bit on Saturday and Sunday, enough that he was able to do some homework and even have friends over for a couple of hours each day.  So, he made it to school on Monday, but he came home feeling a bit worn out and with a headache.  By the time he came downstairs for dinner, he looked (and felt) terrible - severe headache, sore eyes, exhausted again, with awful joint pain and achiness.  By bedtime, he was just sobbing, finally releasing all his frustration and grief.  He said to us, "I'm missing out on everything!"

Our hearts just broke...again, as they have over and over during the past seven years.  We comforted him as best we could and helped him get ready for bed, but it all felt so useless.  It just feels so unfair that our wonderful son should have to suffer so much.  He's such a good kid (young adult, really) - kind and caring, loving life, a good and dedicated student. 

I do understand that we are fortunate in many respects - that medication has helped him so much in the past 5 years and allowed him to go to school, that his younger brother is doing so well, that we have each other and so many loving friends and family.  I also know that some of you reading this right now have kids in even worse shape, so believe me, I'm not complaining.  I just needed to express this grief I'm feeling, and you are the only ones who understand.  I can't share too much of this pain with friends and family.  It just makes people feel uncomfortable.

I believe wholeheartedly that things will get better, and we are taking many steps to try to help him improve and get through this difficult period.  That is my nature - to work toward improvement and to be optimistic for the future.  But it hurts so much right now.

He's doing a bit better this afternoon, still not able to go to school but certainly not as bad as he was last night.  No way around it but through it, right?

Movie Monday 9/26

Despite such a rough week last week, we ended up having a very nice weekend - just the right balance between getting stuff done and enjoying some quiet family time.  Jamie was feeling a bit better Saturday and Sunday and was able to have friends over for a couple of hours each day, so that perked him up quite a bit.  He still needed a good bit of downtime, so we took advantage of that and watched some great movies:

• Friday night, we all watched Limitless, about a very cool sort of sci fi concept.  A newly developed pill allows the person who takes it to use ALL of his/her brain (instead of the 20% scientists estimate we normally use), which results in some amazing brain power!  The main character, played by Bradley Cooper, becomes very successful taking the pills but gradually discovers there's a price to pay.  We all enjoyed it, and Jamie and I agreed that CFS is like the complete opposite of taking that pill!
• I went back to Redbox Saturday night, and we watched Source Code, another movie based on a very cool sci fi concept.  Jake Gyllenhaal is trapped in a loop, replaying the same 8 minutes over and over again, to try to prevent a terrorist from setting off a huge bomb on a train.  It's like a fast-paced, high stakes Groundhog Day.  We all loved this one, too - great suspense.
• Ken and I watched Adventureland after the kids went to bed and really enjoyed that one, too.  Set in 1987, recent college graduate James (played by Jesse Eisenberg of The Social Network fame) is forced to return home to Pittsburgh for the summer when his trip to Europe falls through.  He's not only stuck with his parents but also with a rotten job, manning the carnival games at a local amusement park.  The only thing that saves his summer is his pretty co-worker, played by Kristen Stewart, but things with her are complicated.  I loved the setting, the time, and the music (I graduated in 1987, too!).  There are funny moments in the movie, but it's also got some depth.  Lots of fun.

Have you seen any good movies lately?

How About Some Good News for A Change?

I don't know about you, but it's been another rough week around here.  Craig was home sick two days, and Jamie has been severely crashed all week and missed all five days of school.  I'm doing OK, but we're all feeling bad for Jamie.

So, when I heard some wonderful news yesterday, I wanted to share it with you.  One of our own has recovered!!

Many of you may remember Lori, the mom who blogged over at Living Chronically about her daughter's journey with ME/CFS and celiac disease.  Well, that journey is over now!  Jessica is well - completely and truly well - and is busy attending college and living the life of a happy, healthy young woman.  She has no symptoms, she can do anything she wants without crashing, and she no longer takes any medications at all. 

I talked to Lori about what helped and how she got to this point.  As is usually the case, it's impossible to tell and was probably a combination of things, including a measure of good luck.  Some of the treatments Jessica used that seemed to help with symptoms included:

• Treating sleep dysfunction and headaches with nortriptyline,
• Treating pain with Lyrica,
• Treating Orthostatic Intolerance with Florinef (Jessie was one of those kids who used to think it was normal to feel dizzy and black out all the time!),
• Lots of vitamins and supplements, based on bloodwork, including D3, B vitamins, multi-vitamin, fish oil, and CoQ10.

In addition - and perhaps most importantly - Jessica has celiac disease and is now on a gluten-free diet.  They suspected it for years and had tried gluten-free before, but she was officially tested and diagnosed in 2008 and stayed on a strict gluten-free diet after that.  Her symptoms didn't magically disappear as soon as she returned to gluten-free, but she has gradually improved over the years to where she is now.

They visited the Hunter-Hopkins Center in Charlotte, NC, and many of the treatments listed above came out of that.  Jessica was officially diagnosed with ME/CFS in 2005, so it's been a long and difficult process.  At one point, she had to quit attending school and finish high school online.

So, recovery IS possible and it DOES happen.  Dr. Bell's studies on kids and teens show that people who get ME/CFS as kids are more likely than those of us who got sick as adults to eventually recover, though I've posted stories here before of adults who have recovered as well.  I hope that hearing about Jessica's recovery inspires you and brings a smile to your face - not only in happiness for her but also in hope for all of us.

Movie Monday 9/19

Rough day...all three of us were down and out today.   Jamie played soccer on Saturday for the first time since spring - just three 10-minute periods, but that was enough to crash him.  Craig slept over at a friend's this weekend and forgot to take his Florinef...then forgot it again Sunday morning!  Plus, I think allergies are bothering him, too.  As for me, I've just been doing way too much for way too many days in a row - very achy today.  At least my husband is back home now, after a week away.  That helps!

Not much time for movies last week, and the kids were still totally engrossed with the TV series on DVD they've been watching most of the summer - Bones, The Office, Taxi, and their most recent obsession, The Big Bang Theory.  I did treat myself to one movie:

• After my exhausted kids went to bed early on Saturday night, I watched Remember Me starring Robert Pattison and adorable Emile de Ravin.  Annie over at It's Time to Get Over How Fragile You Are recommended it, but she also warned me it was really sad.  She was right on both counts!  I loved this movie; it's an in-depth character study of two people trying to recover from tragic losses in their lives who find each other.  Despite its sad moments, it's really a movie about the healing power of love and family.  Thanks for the tip, Annie!
• While away last week, my husband watched a couple more discs from the series The Pacific.  He watched Band of Brothers on previous trips and has really enjoyed both series set during World War II and produced by Tom Hanks.

Have you seen any good movies lately?

(If you are also interested in what we are reading this week, check out the Monday post at my book blog.)

New ME/CFS Research Initative

Sorry for being so silent lately.  It was another insanely busy week here, with all the usual culprits (school, soccer, medical appointments, etc), plus my husband was out of town all week, so I was getting the kids to all their commitments on my own.  Also, my mom was visiting, and she and I hosted our book group (a wonderful, kind neighbor actually held it at her house for us; we just provided refreshments and book choices).  Anyway, it's just been very hectic.

But today I read such amazing, exciting news that I had to try to find time to share it with you!

A brand-new non-profit organization has been started specifically to fund and conduct ME/CFS research!  The Chronic Fatigue Initiative (I know, the name is a bit cringe-worthy, but read on), headquartered in NYC and privately funded, has initial plans for $10 million in ME/CFS research between now and 2014.  No, that was not a typo - $10 million!

Take a look at their website at the above link to read more details about their plans.  I was skeptical at first (it sounds too good to be true!), but their list of well-known CFS researchers participating convinced me.

The Wall Street Journal (and our good friend there, Amy Dockser Marcus) published a blog post yesterday with details about the new initiative.

Exciting news, isn't it?  So, raise a glass of grape juice tonight to celebrate the new opportunities and discoveries to come!

Movie Monday 9/12

Is it early enough in the morning to still count as a Monday post?  Whew, yesterday was just non-stop running, and I was pretty badly crashed.  Feeling better this morning, though, thanks to a good night's sleep.

We enjoyed a couple of movies this weekend:

• Ken and I watched The Lincoln Lawyer Saturday night - first time in a long time we've had a chance to watch a movie on our own!  We are both big fans of author Michael Connelly, so it's no surprise we enjoyed this movie based on his legal thriller.  Matthew McConaughey stars as a lawyer with a reputation for representing (and often freeing) low-life clients.  Then he lands a wealthy young man, played by Ryan Phillipe, accused of rape and assault and thinks he stands to make a lot of money in the case.  But things aren't as they seem, and he gets pulled further and further into a tangled mess.  Great suspense with lots of twists and turns.  Marisa Tomei stars as his ex-wife.
• When I saw Johnny English, starring Rowan Atkinson, on the library shelf, I knew the kids would love it.  I was right - all the kids, including Ken!, laughed hysterically at this British slapstick comedy about a James Bond wannabe.  It's basically a British version of The Pink Panther and Inspector Clousseau.  Not exactly my kind of thing but good for some laughs!

Have you seen any good movies lately?

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!

Movie Monday 9/5

As predicted on Friday, we had a quiet weekend at home, helping Jamie to rest.  I wish I could say he is now in good shape, but he's still spending most of his time on the couch, a full week after his oral surgery.  There has been some improvement - he's sitting up more, he says his mind feels more clear, and he's certainly acting more like himself.  Saturday night, my husband said, "The spark is back in his eyes."  And last night, he joined us at the dinner table for an hour for an end-of-summer crab feast.  Still, it's not looking likely that he'll be able to attend school tomorrow...or perhaps at all this year.  We are still hoping that some new treatments might help get him back on his feet.

So, we took it easy this weekend and watched lots of TV and movies with Jamie.  I'm having trouble remembering everything we watched right now (!), but I'll try:

• Just to cheer ourselves up on Friday morning, after canceling our weekend trip, we all watched Ferris Bueller's Day Off.  We've all seen it before, but that only makes it funnier!  Just what we needed to get our minds off our troubles and laugh.
• Jamie watched Salt starring Angela Jolie, a great spy thriller that Ken and I had already seen.  He'd wanted to see it for a while, so was happy when I brought it home from the library.  Its twisty-turny plot keeps you guessing right till the end.
• Ken and I watched The DaVinci Code with Jamie while Craig was out with friends.  We'd seen it before, but I knew Jamie would love the suspenseful, clever thriller (and he did).  Made me realize I need to read Dan Brown's other novels that have been sitting on my to-be-read shelf for a long time.
• Craig had a friend sleep over last night, so Ken, Jamie, and I watched I Am Number Four, a sci fi thriller based on a popular YA novel.  It was excellent: well-acted, exciting, and fast-paced.  When it was over, Jamie said, "I have to read the book now!  And the sequel!"  The sequel, The Power of Six, was just released last week (in hardcover).
• While I napped today, Ken and Jamie watched Battle: Los Angeles about aliens invading earth.  From what I could tell, the title was accurate - lots of battle sounds!  I think they both enjoyed it.

In between, we continued our marathon of Bones, introduced the kids to the classic sitcom, Taxi, and watched a few episodes of Mad Men (Ken and I).

Have you seen any good movies lately?

(If you are also interested in what our family is reading this week, check out my book blog).

CFS Grief

It's been a long time since I've cried over CFS (yes, it does get better over time), but I cried this morning.  Not about myself but my son.  There is no worse experience in the world than seeing your child suffer and not being able to help him.

Jamie is no better, five days after his minor surgery.  In fact, he seems a bit worse, definitely in the grips of a severe crash.  Worse, this is not all due to his surgery this week.  He's been in terrible shape since about April, probably a reaction to his treatments for Lyme, bartonella, and babesia (tick-borne illnesses).

Whatever the causes, it is extremely difficult as parents to see him lie on the couch day after day while his friends run around being normal teenagers and getting ready for their senior year of high school.  My husband and I have been so upset these last few days, though of course, we try not to show it.

This kind of grieving is an integral part of living with chronic illness, but it never gets easier (less frequent, perhaps, but no less painful when it hits).

There is a very good chance that Jamie won't be able to attend school regularly this year, as he has for the past five years, since starting treatment for OI.  That is so painful to consider.  This is his senior year of high school; all we want is for him to be able to be a normal 17-year old.

We had to cancel our planned trip to visit my family this weekend.  We were supposed to attend my cousin's wedding tonight, a big family gathering tomorrow, and spend the day at a lake with my aunt and uncle and cousins on Sunday.  Instead, we're looking at yet another weekend spent in the family room.

OK, I'm trying to pull myself together and make the best of things.  Jamie and I have just started watching Ferris Bueller's Day Off on DVD - guaranteed laughs!