Erica Verrillo, a wonderful journalist with ME/CFS who writes about our illness, has written a new article for ProHealth called 10 Celebrities with ME/CFS. I found it interesting because I only knew about a few of them.
Of course, everyone knows about Laura Hillenbrand, the award-winning author of Seasbiscuit and Unbroken who is housebound by ME/CFS. I knew about Blake Edwards, the famous Hollywood writer and director, and our family has long hailed Michelle Akers, an extraordinary professional soccer player until ME/CFS ended her career, as our own personal hero. But there are many more on this list whom I had no idea had ME/CFS.
Interestingly, it also appears that a few of them have recovered, which is hopeful in itself. I just wish the general public knew more about these celebrities and their/our illness. We need a famous face to help build awareness - our very own Michael J. Fox. I posted this article to my personal Facebook page to help build awareness among my friends and family. It's a small step...
Did you know about these celebrities' struggles with ME/CFS? Do you know of any others not on this list? Help spread the word!
(And a big thanks to Erica Verrillo for what must have been a lot of extensive research!)
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.
Friday, July 25, 2014
Thursday, July 24, 2014
Yes, I Have Lyme Again
I apologize for the lack of frequent blog posts lately. We are dealing with a lot at our house this summer, including urgencies with both of our fathers, and I'd been in bad shape since the start of July, so writing time and energy have been scarce. It won't get much better before fall.
I wrote last week about the possibility that I might have Lyme disease again (including a brief history of my previous bout of Lyme). We traveled to visit my Dad over the weekend (he's undergoing cancer treatments), and I was able to get in to see our Lyme doctor on Monday afternoon. He confirmed that I do seem to have Lyme again, both because I know how it affects me - and the symptoms were exactly the same as the last time - and because I responded very well to doxycycline. Within hours of my first dose, the then-excruciating knee pain began to subside. After a few days on the antibiotic, my energy was back, I was feeling good again, nausea gone, and knee pain almost gone except for a bit in the evenings. And after a week on doxycycline, all my symptoms were gone, and I was feeling quite good again, back to my normal baseline of energy and stamina (not great for a normal person but on the high side for someone with ME/CFS!).
He took some blood to run a few exclusion tests, just to be sure there's not anything else going on. Lyme testing per se is pretty useless at this point for me. I had Lyme for over 3 years before and never had a positive test result the entire time, which is not unusual. I asked him about testing for other tick-borne infections, but he quizzed me on symptoms and said that if I didn't have any of the symptoms and the doxy seems to be doing the job on its own, then co-infections aren't likely. If any new symptoms crop up, we'll consider that again (once again, the testing is unreliable so diagnosis depends primarily on symptoms).
I responded well last time - and so far this time - to doxycyline, so we're going to stick with that. He gave me a coupon for a new brand called Doryx where the doxy is all encapsulated in tiny capsules in the pill so that it doesn't upset the stomach the way generic doxy does and you don't have to worry about what you eat with it (iron, calcium, and magnesium all block the action of regular doxy). So, that's all good. Doxycycline does cause sun sensitivity, so I'll need to be careful the rest of the summer, but it didn't affect me too badly before at this normal dose - I only noticed that effect at higher doses, so we'll wait until summer is over to go up on the dose.
Meanwhile, I am pulling out all the stops to avoid another yeast overgrowth. I am already on a strict no-sugar, no grains diet, taking high-powered probiotics, and anti-yeast supplements. I doubled all of that, and increased my dose of oregano (an antibacterial, antiviral, and antifungal) by 4. He is hoping we can manage without prescription antifungals, but we'll see.
As for whether this is Lyme STILL or Lyme AGAIN, it seems pretty clear to me that this is probably a new infection. I haven't had any of the symptoms I associate with Lyme (knee pain, nausea, continual worsening of CFS) in the 4 years since I got rid of Lyme the first time. Research seems to back up that hypothesis: a fascinating study published in the New England Journal of Medicine of patients who'd had Lyme more than once showed that in all cases, they were new infections from different strains of Lyme bacteria. You might think that's a strange coincidence, the same person getting Lyme more than once, but it's really not. I live in the mid-Atlantic, which along with the northeast, midwest, California, and many other areas have rampant numbers of infected ticks now and practically an epidemic of Lyme disease. Just about every family we know in our area has at least one person who's had Lyme.
In fact, here's my public service announcement again:
ANYONE with CFS or FM (and especially those with joint pain) should be evaluated by a Lyme expert for ALL tick-borne infections. They are incredibly common all over the world, very hard to tell apart from CFS and FM if you don't know what to look for, and negative blood tests mean nothing since they are known to miss many cases. There's more information in this blog post.
As for me, I am feeling much better and hoping that will continue. I also hope that I caught it early this time so that my treatment won't take nearly as long as it did before.
I wrote last week about the possibility that I might have Lyme disease again (including a brief history of my previous bout of Lyme). We traveled to visit my Dad over the weekend (he's undergoing cancer treatments), and I was able to get in to see our Lyme doctor on Monday afternoon. He confirmed that I do seem to have Lyme again, both because I know how it affects me - and the symptoms were exactly the same as the last time - and because I responded very well to doxycycline. Within hours of my first dose, the then-excruciating knee pain began to subside. After a few days on the antibiotic, my energy was back, I was feeling good again, nausea gone, and knee pain almost gone except for a bit in the evenings. And after a week on doxycycline, all my symptoms were gone, and I was feeling quite good again, back to my normal baseline of energy and stamina (not great for a normal person but on the high side for someone with ME/CFS!).
He took some blood to run a few exclusion tests, just to be sure there's not anything else going on. Lyme testing per se is pretty useless at this point for me. I had Lyme for over 3 years before and never had a positive test result the entire time, which is not unusual. I asked him about testing for other tick-borne infections, but he quizzed me on symptoms and said that if I didn't have any of the symptoms and the doxy seems to be doing the job on its own, then co-infections aren't likely. If any new symptoms crop up, we'll consider that again (once again, the testing is unreliable so diagnosis depends primarily on symptoms).
I responded well last time - and so far this time - to doxycyline, so we're going to stick with that. He gave me a coupon for a new brand called Doryx where the doxy is all encapsulated in tiny capsules in the pill so that it doesn't upset the stomach the way generic doxy does and you don't have to worry about what you eat with it (iron, calcium, and magnesium all block the action of regular doxy). So, that's all good. Doxycycline does cause sun sensitivity, so I'll need to be careful the rest of the summer, but it didn't affect me too badly before at this normal dose - I only noticed that effect at higher doses, so we'll wait until summer is over to go up on the dose.
Meanwhile, I am pulling out all the stops to avoid another yeast overgrowth. I am already on a strict no-sugar, no grains diet, taking high-powered probiotics, and anti-yeast supplements. I doubled all of that, and increased my dose of oregano (an antibacterial, antiviral, and antifungal) by 4. He is hoping we can manage without prescription antifungals, but we'll see.
As for whether this is Lyme STILL or Lyme AGAIN, it seems pretty clear to me that this is probably a new infection. I haven't had any of the symptoms I associate with Lyme (knee pain, nausea, continual worsening of CFS) in the 4 years since I got rid of Lyme the first time. Research seems to back up that hypothesis: a fascinating study published in the New England Journal of Medicine of patients who'd had Lyme more than once showed that in all cases, they were new infections from different strains of Lyme bacteria. You might think that's a strange coincidence, the same person getting Lyme more than once, but it's really not. I live in the mid-Atlantic, which along with the northeast, midwest, California, and many other areas have rampant numbers of infected ticks now and practically an epidemic of Lyme disease. Just about every family we know in our area has at least one person who's had Lyme.
In fact, here's my public service announcement again:
ANYONE with CFS or FM (and especially those with joint pain) should be evaluated by a Lyme expert for ALL tick-borne infections. They are incredibly common all over the world, very hard to tell apart from CFS and FM if you don't know what to look for, and negative blood tests mean nothing since they are known to miss many cases. There's more information in this blog post.
As for me, I am feeling much better and hoping that will continue. I also hope that I caught it early this time so that my treatment won't take nearly as long as it did before.
Tuesday, July 22, 2014
Movie Tuesday 7/22
A Tale of Two Movies...It was the best of times, it was the worst of times...
Our teen sons are off on their annual week of sailing with their grandparents, so Ken and I are enjoying a quiet week to ourselves. We indulged in a couple of movies this weekend - one that was wonderful and the other - well, not so much.
First, we watched Saving Mr. Banks, a Disney movie about the making of Mary Poppins that is warm, touching, and funny. Full disclosure: I have been a huge fan of both the Mary Poppins movie and the original book since I was a little girl! In this movie, Walt Disney, played perfectly by Tom Hanks, tries to convince grumpy author P.L. Travers, played by Emma Thompson, to sell him the movie rights to her famous nanny. He invites her to Hollywood for two weeks, and attempts to woo her with all that Disney stands for, not realizing that she is not only immune to Disney's charms, she is downright disdainful of them. Interspersed with these scenes set in 1961 Hollywood are scenes from Travers' childhood in the wilds of Australia that show the origin of much of the basis for Mary Poppins' characters, including a painful though loving relationship with her father. The parts about her childhood are heart-warming as well as heart-breaking and also illuminating for Mary Poppins fans. And the Disney scenes of the writing and composing of the movie are clever and funny, filled with familiar lines and iconic songs you've known since you were a kid. The movie is based in part on actual tapes made of P.L. Travers' sessions at Disney (which she insisted on to ensure her wishes were not ignored). All in all, it is a delightful, touching two hours. Watch Disney's Mary Poppins first (unless, like me, you know it by heart) and then watch Saving Mr. Banks to get the most out of it (though it would even be enjoyable to those who've never seen the movie - are there such people??). I guarantee your next stop will be the library for the original book.
Last might, we watched Enemy, the complete opposite of Saving Mr. Banks! Jake Gyllenhaal plays two roles in this dark, creepy, very confusing movie. When the movie opens, he is playing Adam, a reclusive, shy, depressed history professor. When a colleague from work convinces Adam to watch a cheery DVD, Adam notices something that changes his life: he spots a bit actor in one scene who is his exact double. He does some digging online and finds the actor's agent and then his home address and tracks him down (yes, all a bit stalkerish). Once the two men meet face to face, the movie becomes very confusing. We often asked each other, "Wait, which one is this? The actor or the history teacher?" The whole thing is filmed with a sort of yellowish cast to the scenes, and much of the film moves at a slow pace, but with oddly discordant creepy music playing in the background the whole time. So, although it seems like not much is happening on the screen, the music makes you feel tense and full of dread. When the last scene came onto the screen, Ken and I simultaneously yelled, "What??" Then we spent the next 30 minutes trying to figure out what on earth really happened in the movie. Many online reviews suggested that if we didn't get it, it was because we weren't smart or sophisticated enough, and that it becomes much clearer on subsequent viewings. Not much chance of us watching it again! Though, it definitely did get under our skins and into our minds. For the past 24 hours, one of us keeps suddenly saying to the other, "OK, in that movie, why on earth...?" A lot of things just didn't make sense...and still don't! If you do decide to watch the movie, don't read online reviews first - there were lots of spoilers there.
Have you seen any good movies lately?
Our teen sons are off on their annual week of sailing with their grandparents, so Ken and I are enjoying a quiet week to ourselves. We indulged in a couple of movies this weekend - one that was wonderful and the other - well, not so much.
First, we watched Saving Mr. Banks, a Disney movie about the making of Mary Poppins that is warm, touching, and funny. Full disclosure: I have been a huge fan of both the Mary Poppins movie and the original book since I was a little girl! In this movie, Walt Disney, played perfectly by Tom Hanks, tries to convince grumpy author P.L. Travers, played by Emma Thompson, to sell him the movie rights to her famous nanny. He invites her to Hollywood for two weeks, and attempts to woo her with all that Disney stands for, not realizing that she is not only immune to Disney's charms, she is downright disdainful of them. Interspersed with these scenes set in 1961 Hollywood are scenes from Travers' childhood in the wilds of Australia that show the origin of much of the basis for Mary Poppins' characters, including a painful though loving relationship with her father. The parts about her childhood are heart-warming as well as heart-breaking and also illuminating for Mary Poppins fans. And the Disney scenes of the writing and composing of the movie are clever and funny, filled with familiar lines and iconic songs you've known since you were a kid. The movie is based in part on actual tapes made of P.L. Travers' sessions at Disney (which she insisted on to ensure her wishes were not ignored). All in all, it is a delightful, touching two hours. Watch Disney's Mary Poppins first (unless, like me, you know it by heart) and then watch Saving Mr. Banks to get the most out of it (though it would even be enjoyable to those who've never seen the movie - are there such people??). I guarantee your next stop will be the library for the original book.Last might, we watched Enemy, the complete opposite of Saving Mr. Banks! Jake Gyllenhaal plays two roles in this dark, creepy, very confusing movie. When the movie opens, he is playing Adam, a reclusive, shy, depressed history professor. When a colleague from work convinces Adam to watch a cheery DVD, Adam notices something that changes his life: he spots a bit actor in one scene who is his exact double. He does some digging online and finds the actor's agent and then his home address and tracks him down (yes, all a bit stalkerish). Once the two men meet face to face, the movie becomes very confusing. We often asked each other, "Wait, which one is this? The actor or the history teacher?" The whole thing is filmed with a sort of yellowish cast to the scenes, and much of the film moves at a slow pace, but with oddly discordant creepy music playing in the background the whole time. So, although it seems like not much is happening on the screen, the music makes you feel tense and full of dread. When the last scene came onto the screen, Ken and I simultaneously yelled, "What??" Then we spent the next 30 minutes trying to figure out what on earth really happened in the movie. Many online reviews suggested that if we didn't get it, it was because we weren't smart or sophisticated enough, and that it becomes much clearer on subsequent viewings. Not much chance of us watching it again! Though, it definitely did get under our skins and into our minds. For the past 24 hours, one of us keeps suddenly saying to the other, "OK, in that movie, why on earth...?" A lot of things just didn't make sense...and still don't! If you do decide to watch the movie, don't read online reviews first - there were lots of spoilers there.Have you seen any good movies lately?
Monday, July 14, 2014
Lyme Again?
I think I may have Lyme disease again. I've been trying not to jump to conclusions, but I think it's time to face facts and start a trial of doxycycline to test the theory.
I have a complicated illness history that I will try to sum up briefly:
I suddenly became ill with ME/CFS in 2002. I know that wasn't Lyme because it took me a year to get an accurate diagnosis and during that year, one doctor misdiagnosed me with Lyme and tried treatments for several months with no change at all. Besides, CFS fit my symptoms much better, and I have improved over the years with the help of CFS treatments.
I have had Lyme, though. About 6-7 years ago, I had a sudden-onset of knee pain (after 6 years of CFS with no joint pain at all), plus nausea. In addition, all my usual CFS symptoms got much worse. I knew immediately this was something different and not "just" a CFS flare-up, though it took a few weeks to convince my doctor since my Lyme tests kept coming back negative (a common occurrence). I was treated with a variety of antibiotics and natural/herbal remedies for about 3 1/2 years, until I could stop the antibiotics without my Lyme symptoms coming back (general rule of thumb is at least 4-6 weeks of treatment past when symptoms clear up, but it took me much longer, probably because of CFS).
That was about 3 years ago, and I've been back to my CFS baseline since then, with improvements with various CFS treatments and little or no joint pain or nausea.
About a week ago, I noticed the achiness starting in my knees again, especially late in the day. Within a few days, nausea came back, too. My husband and I thought it was probably just a CFS flare-up because of all the stress and extra exertion in my life lately (see recent posts), but I spent the weekend just resting and was no better. In fact, I felt awful Sunday night - even after a 3-hour nap - and couldn't even stay on my feet to finish making dinner - horrible nausea and knee pain, my old Lyme buddies. I woke this morning feeling exhausted and couldn't get out of bed until a couple of hours past when I normally get up (mornings are usually my best time and I normally wake feeling good, thanks to treatments for sleep dysfunction).
So, I talked it over with my old Lyme doctor (who is still my son's Lyme doctor). He agreed that a trial of doxycycline should be able to tell me if my suspicions are correct. That's how I confirmed the diagnosis last time...I felt really great the first few days on doxy, all symptoms cleared up, and then felt worse (the herx reaction). So, I will give it a try and see what happens, being extra careful to guard against yeast overgrowth this time.
I am really upset over all this - I just do not need another thing to deal with right now - but waiting and resting seems to just be making me worse, so I need to see what happens.
If you want to know more about my past experiences with Lyme (and/or my son's), click on Lyme disease down below, where the labels are to see all posts related to Lyme.
And for more information on Lyme itself and why it is so hard to tell apart from CFS (and why testing is so unreliable), see this recent post on CFS and Lyme.
I have a complicated illness history that I will try to sum up briefly:
I suddenly became ill with ME/CFS in 2002. I know that wasn't Lyme because it took me a year to get an accurate diagnosis and during that year, one doctor misdiagnosed me with Lyme and tried treatments for several months with no change at all. Besides, CFS fit my symptoms much better, and I have improved over the years with the help of CFS treatments.
I have had Lyme, though. About 6-7 years ago, I had a sudden-onset of knee pain (after 6 years of CFS with no joint pain at all), plus nausea. In addition, all my usual CFS symptoms got much worse. I knew immediately this was something different and not "just" a CFS flare-up, though it took a few weeks to convince my doctor since my Lyme tests kept coming back negative (a common occurrence). I was treated with a variety of antibiotics and natural/herbal remedies for about 3 1/2 years, until I could stop the antibiotics without my Lyme symptoms coming back (general rule of thumb is at least 4-6 weeks of treatment past when symptoms clear up, but it took me much longer, probably because of CFS).
That was about 3 years ago, and I've been back to my CFS baseline since then, with improvements with various CFS treatments and little or no joint pain or nausea.
About a week ago, I noticed the achiness starting in my knees again, especially late in the day. Within a few days, nausea came back, too. My husband and I thought it was probably just a CFS flare-up because of all the stress and extra exertion in my life lately (see recent posts), but I spent the weekend just resting and was no better. In fact, I felt awful Sunday night - even after a 3-hour nap - and couldn't even stay on my feet to finish making dinner - horrible nausea and knee pain, my old Lyme buddies. I woke this morning feeling exhausted and couldn't get out of bed until a couple of hours past when I normally get up (mornings are usually my best time and I normally wake feeling good, thanks to treatments for sleep dysfunction).
So, I talked it over with my old Lyme doctor (who is still my son's Lyme doctor). He agreed that a trial of doxycycline should be able to tell me if my suspicions are correct. That's how I confirmed the diagnosis last time...I felt really great the first few days on doxy, all symptoms cleared up, and then felt worse (the herx reaction). So, I will give it a try and see what happens, being extra careful to guard against yeast overgrowth this time.
I am really upset over all this - I just do not need another thing to deal with right now - but waiting and resting seems to just be making me worse, so I need to see what happens.
If you want to know more about my past experiences with Lyme (and/or my son's), click on Lyme disease down below, where the labels are to see all posts related to Lyme.
And for more information on Lyme itself and why it is so hard to tell apart from CFS (and why testing is so unreliable), see this recent post on CFS and Lyme.
Saturday, July 12, 2014
Quote It Saturday 7/12
So, just a brief quote today but one that is very relevant for me this week:
"But when we ignore the body, we are more easily victimized by it."(you can read my review of the book here)
- The Unbearable Lightness of Being by Milan Kundera
I wondered yesterday whether I had Lyme disease again because my symptoms were flared up so badly every evening this week. My husband pointed out that I have been under extreme stress this week, traveling and worrying about my dad, plus much more physical exertion than I am used to, cleaning out the house and then flying home (an 8-hour trip through 3 airports). After he calmed me down and I stopped panicking, I realized he was probably right and that I have been feeling fairly good in the mornings and then awful by late afternoon, which points to stress and exertion.
I have been ignoring my body lately and paying the price. I am trying to take it easier today. Thankfully, it is Saturday, so that means less running around for me. My husband kindly took our son to PT, stopped at the grocery store, and will run him to a friend's gathering later. Hopefully, a little rest and TLC will get me back in my normal shape.
Remember to take care of yourself! Hope you are enjoying a relaxing and restful weekend.
Friday, July 11, 2014
One Son Recovered?
Things have been crazy around here, with a visit to help my father-in-law sort through his house to get ready to move here and my dad having a 7-hour surgery yesterday as a first step to treating stage 3 melanoma. So, I am pretty exhausted and experiencing lots of stress.
But among all the bad stuff, we've had some good news, too. My 16-year old son has weaned himself off his Florinef (medication for Orthostatic Intolerance - OI) for the first time in 8 years, with no apparent ill effects! We tried the same thing last summer, but his symptoms flared up. So, after 8 years, he is now taking no Florinef, potassium, or salt tablets...and so far, he seems to be doing well. He's been very active - playing soccer, golf, biking, etc. in the summer heat, plus going to PT several times a week - and he's been feeling great.
His CFS has always been mild, and he fits the profile for those with the best chance of recovery (childhood onset, mild symptoms, up and down pattern, abrupt onset).
His symptoms began at age 6 (1st grade), at the same time as his older brother who was 10. Our younger son's symptoms were different, though, than mine or his brother's. His main symptoms were pain-related: chest pain, back pain, headaches, plus in his 6-year old words, "just feeling bad all over." He showed the classic post-exertional crashes and crashes when exposed to a virus but in between those bad periods, he felt fine. We talked privately to his pediatrician about our suspicions (by then his older brother and I were both diagnosed with CFS) but held off on officially diagnosing him - he was so little and still functioning well much of the time that we didn't want to saddle him with the label of being sick.
By spring of 3rd grade, he had missed over 35 days of school, and the principal called us to find out what was going on - at that point, his pediatrician ran all the necessary exclusion tests and officially diagnosed him with CFS. I had discussed his symptoms with Dr. David Bell (pediatric CFS expert, now retired) and Dr. Peter Rowe, pediatric CFS and OI expert at Johns Hopkins. They both thought that most of his symptoms were OI-related and would improve with treatment, so we started him on Florinef (our pediatrician worked with Dr. Rowe by phone, something he is still happy to do to help educate other doctors about CFS and OI in kids) which had helped out older son considerably.
The Florinef worked wonderfully - it cleared up all of his pain symptoms and greatly reduced the post-exertional crashes. On Florinef, he was symptom-free about 95% of the time and could do just about anything he wanted. He would still crash occasionally if he really overdid (we had an "only 1 sleepover in a row" rule!) and a cold might knock him out for a week or so, but otherwise, he has lived a fairly normal life from starting Florinef at the end of 3rd grade through the present.
He typically missed between 12 - 15 days of school each year for those occasional crashes but felt perfectly well the rest of the time. He's been playing soccer since he was 4 years old and has been on his school soccer team since starting high school, as well as a travel team this past year. He has had some injuries that sidelined him (he's hypermobile and prone to soft tissue injuries), but CFS/OI had little to no effect on his athletic life.
This past year, he missed only 3 days of school the entire year! That's a pretty amazing record for our household. And that included time out after a knee surgery. So, when he wanted to try going off Florinef again, we gave him the OK. He tapered off, as you're supposed to, and has now been completely off it for several weeks and is doing very well.
So, is he completely recovered? I don't think that's ever an easy question. He's definitely got Joint Hypermobility Syndrome, and he thinks he still has some mild OI symptoms. He says he sometimes gets dizzy if he stands up too fast or doesn't stay hydrated. But otherwise, he seems quite well. The real test will be starting school in the fall - going to school full-time and playing soccer two hours a day - but so far, so good!
That's your dose of hope for today - some people DO recover and it is possible.
But among all the bad stuff, we've had some good news, too. My 16-year old son has weaned himself off his Florinef (medication for Orthostatic Intolerance - OI) for the first time in 8 years, with no apparent ill effects! We tried the same thing last summer, but his symptoms flared up. So, after 8 years, he is now taking no Florinef, potassium, or salt tablets...and so far, he seems to be doing well. He's been very active - playing soccer, golf, biking, etc. in the summer heat, plus going to PT several times a week - and he's been feeling great.
His CFS has always been mild, and he fits the profile for those with the best chance of recovery (childhood onset, mild symptoms, up and down pattern, abrupt onset).
His symptoms began at age 6 (1st grade), at the same time as his older brother who was 10. Our younger son's symptoms were different, though, than mine or his brother's. His main symptoms were pain-related: chest pain, back pain, headaches, plus in his 6-year old words, "just feeling bad all over." He showed the classic post-exertional crashes and crashes when exposed to a virus but in between those bad periods, he felt fine. We talked privately to his pediatrician about our suspicions (by then his older brother and I were both diagnosed with CFS) but held off on officially diagnosing him - he was so little and still functioning well much of the time that we didn't want to saddle him with the label of being sick.
By spring of 3rd grade, he had missed over 35 days of school, and the principal called us to find out what was going on - at that point, his pediatrician ran all the necessary exclusion tests and officially diagnosed him with CFS. I had discussed his symptoms with Dr. David Bell (pediatric CFS expert, now retired) and Dr. Peter Rowe, pediatric CFS and OI expert at Johns Hopkins. They both thought that most of his symptoms were OI-related and would improve with treatment, so we started him on Florinef (our pediatrician worked with Dr. Rowe by phone, something he is still happy to do to help educate other doctors about CFS and OI in kids) which had helped out older son considerably.
The Florinef worked wonderfully - it cleared up all of his pain symptoms and greatly reduced the post-exertional crashes. On Florinef, he was symptom-free about 95% of the time and could do just about anything he wanted. He would still crash occasionally if he really overdid (we had an "only 1 sleepover in a row" rule!) and a cold might knock him out for a week or so, but otherwise, he has lived a fairly normal life from starting Florinef at the end of 3rd grade through the present.
He typically missed between 12 - 15 days of school each year for those occasional crashes but felt perfectly well the rest of the time. He's been playing soccer since he was 4 years old and has been on his school soccer team since starting high school, as well as a travel team this past year. He has had some injuries that sidelined him (he's hypermobile and prone to soft tissue injuries), but CFS/OI had little to no effect on his athletic life.
This past year, he missed only 3 days of school the entire year! That's a pretty amazing record for our household. And that included time out after a knee surgery. So, when he wanted to try going off Florinef again, we gave him the OK. He tapered off, as you're supposed to, and has now been completely off it for several weeks and is doing very well.
So, is he completely recovered? I don't think that's ever an easy question. He's definitely got Joint Hypermobility Syndrome, and he thinks he still has some mild OI symptoms. He says he sometimes gets dizzy if he stands up too fast or doesn't stay hydrated. But otherwise, he seems quite well. The real test will be starting school in the fall - going to school full-time and playing soccer two hours a day - but so far, so good!
That's your dose of hope for today - some people DO recover and it is possible.
Tuesday, July 01, 2014
Busy, Stressful Times
Hi, all. I apologize for the lack of posts here lately, so I thought I'd stop in to explain quickly. Things have been difficult and hectic around here. I've reverted to survival mode - make meals, check e-mail, get done what absolutely must get done.
We just returned from a last-minute visit to my hometown of Rochester, NY, to spend some time with my dad. He was recently diagnosed with stage 3 melanoma on his scalp. It has moved into the lymph nodes on one side of his neck but doesn't seem to have spread from there yet. It has been a shock for all of us, as he has been very healthy and doing well previously. He's going to have surgery next week - possibly multiple surgeries, depending on what they find when they get in there.
So, we drove the 8 hours each way to visit and spend some time with him. Soon, we will leave again on a long-planned trip to Oklahoma to visit my father-in-law, whom we are working on moving out here by the end of the summer. We will help him get some things done for the move and also visit with family coming up from Texas to see us while we're there. It's probably our last trip out there, so it's a big deal for all of us - our sons have grown up visiting there twice a year!
When we get back, we will probably make another trip up to Rochester, after my dad's surgery.
So, yeah, things have been pretty crazy here lately, and it's not going to get any better for a while! This week, I am focused on getting unpacked from one trip and ready for another, so I probably won't have much time for writing again. Physically, I am managing OK. I was exhausted this weekend because I don;t sleep well in hotels but am better now that I am back home.
I just wanted you to know I haven't forgotten about the blog - just distracted lately. I do have some posts in mind, when I can find time.
I saw this picture & saying on my aunt's fridge this weekend when we were visiting. She is the caretaker for my uncle who has some severe medical problems that cause issues similar to dementia, so she gets what this life is like. I am trying to remember this...hope you like it, too!
We just returned from a last-minute visit to my hometown of Rochester, NY, to spend some time with my dad. He was recently diagnosed with stage 3 melanoma on his scalp. It has moved into the lymph nodes on one side of his neck but doesn't seem to have spread from there yet. It has been a shock for all of us, as he has been very healthy and doing well previously. He's going to have surgery next week - possibly multiple surgeries, depending on what they find when they get in there.
So, we drove the 8 hours each way to visit and spend some time with him. Soon, we will leave again on a long-planned trip to Oklahoma to visit my father-in-law, whom we are working on moving out here by the end of the summer. We will help him get some things done for the move and also visit with family coming up from Texas to see us while we're there. It's probably our last trip out there, so it's a big deal for all of us - our sons have grown up visiting there twice a year!
When we get back, we will probably make another trip up to Rochester, after my dad's surgery.
So, yeah, things have been pretty crazy here lately, and it's not going to get any better for a while! This week, I am focused on getting unpacked from one trip and ready for another, so I probably won't have much time for writing again. Physically, I am managing OK. I was exhausted this weekend because I don;t sleep well in hotels but am better now that I am back home.
I just wanted you to know I haven't forgotten about the blog - just distracted lately. I do have some posts in mind, when I can find time.
I saw this picture & saying on my aunt's fridge this weekend when we were visiting. She is the caretaker for my uncle who has some severe medical problems that cause issues similar to dementia, so she gets what this life is like. I am trying to remember this...hope you like it, too!
