Thursday, January 31, 2013
So, I must admit, I just noticed that it's only really been about 2 months since Ellie was officially diagnosed with CVS and it feels like it has been months and months and months. I don't know why. Maybe it's because I've learned so much in such a short amount of time (regarding the illness and the best ways to help Ellie) or maybe it's because it's exhausting and a little overwhelming. Regardless, a little over 2 months and we had our first CVS check-up appointment this week with Ellie's GI doctor. Thought I'd share the update:
What I was able to report to the doctor was: we know Ellie definitely has episodes when her body encounters a virus. B and I agree that has been made crystal clear. She has an episode for what seems like no particular reason (meaning her sleep patterns were fine and no highs or lows in life that we could see) and then a day or two later she is sick with a bad cold. We know, as we have, that her sleep patterns also strongly affect her episodes--she has clearly had a bad or "off" night or two of sleep and then a night or two later--episode. And, Christmas made it also very clear that extreme highs set her off.
What the doctor and I talked about: Lately Ellie has had more episodes but they have been at least 50% less intense than they were for a while there. Not really sure what this means...one possibility is that she is recognizing her symptoms sooner. She yelled out the other night, "Mom! I need my zofran!" which was a surprise for many reasons, the greatest being that she knew the name of the medicine, but this might be an example of her beginning to understand and read her own signs and symptoms. We were all back to sleep within an hour that night.
Her doctor said again
that the best maintenance for her CVS and the
best cure when she is in the depth of an episode is sleep. He was
surprised to know that Ellie's zofran alone does not "knock her out."
And, it's been problematic trying to add the benadryl because who wants
to take a shot of spicy berry flavor when they are on the verge of
puking? He was also concerned with the amount of episodes she continues
to have, even if they are less intense. So, we are trying a new medicine
that is supposed to be preventative and has had some good results in
CVS people. It's called Amitriptyline.
Way, way back in the day they used it to treat depression but soon
realized it was calming people and making them super tired but not doing
anything about the depression...perfect for CVS people! Unfortunately
she is so small that it's a pretty big dose because there would typically
be no reason to give this to a kid. I don't love that, but he says lets
try it for a month or two and see what happens. The
biggest side effect is sleepiness, which in Ellie's case is the point.
The other big side effect is that if you had a heart murmur this
medicine could exasperate it. So, she had an EKG done. Oh, and we have
to watch her weight. She is a fine and healthy weight right now but he
says we don't want her to loose weight at this point. She lost about 3
lbs since November, so we gotta watch that.
Other interesting tidbits I found out this appointment:
I asked if he thought people have always had CVS and it's just now being diagnosed. He said yes, that's the assumption. He said that kids with CVS were said to have "weak stomachs" or depression or high anxiety, etc, etc. Now we know it's neurological but there is still a ton to figure out (like migraines, still so much unknown). He also said that for a long time it was assumed that this was mainly a childhood disease (that's what I've read too) but that now there is this whole generation of people who were diagnosed as kids or teens in the last 10-20 years and have grown up and the disease hasn't changed for them so they are moving away from labeling it a childhood disease but still about half the people diagnosed have much, much less symptoms as adults. I asked how rare CVS was (I was wondering if I could meet other parents in our area whose children had it--HA!) He said that Ellie is his only patient right now who has CVS. That was shocking for me. I didn't realize it was quite *that* rare. He said that there are probably about 75/100 or so kids/adults in our area who have diagnosed CVS who just go to Milwaukee to see Dr. Li (the CVS guru)...and that's where we are headed. I asked if we could go see him, Dr. Li, to be connected, ask questions and help with research. He was clearly excited I asked that and said he will call up there himself in the next few days to see about getting us in sooner than later (meaning in the next 2-3 months).
And that's the update! A parenting lesson through all of this--as her Mom I dwell on her episodes, worrying, wanting to "fix" it, constantly checking my phone during the day in case school calls, etc, etc. It has been draining for me personally. BUT, as a happy, amazing, brave, sweet, bossy, confident, intelligent, stable 6-year-old--she generally has an episode in the middle of the night and the next day it is over and that is that. No dwelling, no worrying, just moving forward. It's been a beautiful thing to witness and learn from. There are exceptions of course, on Christmas day she was in the middle of a fairly strong episode. Lots of nausea, lots of pain and she sort of had a massive meltdown. I swear if she knew the word "fuck" she would have used it! She was yelling and crying and just generally pissed off. But, that's ok, it was a really long episode and it was Christmas and she felt awful. A little meltdown seemed right on track! Generally though, she has been amazing and I've made sure to tell her ALL the time how amazing she has been.
Ok, bed...
xoxoxooxo
So, I must admit, I just noticed that it's only really been about 2 months since Ellie was officially diagnosed with CVS and it feels like it has been months and months and months. I don't know why. Maybe it's because I've learned so much in such a short amount of time (regarding the illness and the best ways to help Ellie) or maybe it's because it's exhausting and a little overwhelming. Regardless, a little over 2 months and we had our first CVS check-up appointment this week with Ellie's GI doctor. Thought I'd share the update:
What I was able to report to the doctor was: we know Ellie definitely has episodes when her body encounters a virus. B and I agree that has been made crystal clear. She has an episode for what seems like no particular reason (meaning her sleep patterns were fine and no highs or lows in life that we could see) and then a day or two later she is sick with a bad cold. We know, as we have, that her sleep patterns also strongly affect her episodes--she has clearly had a bad or "off" night or two of sleep and then a night or two later--episode. And, Christmas made it also very clear that extreme highs set her off.
What the doctor and I talked about: Lately Ellie has had more episodes but they have been at least 50% less intense than they were for a while there. Not really sure what this means...one possibility is that she is recognizing her symptoms sooner. She yelled out the other night, "Mom! I need my zofran!" which was a surprise for many reasons, the greatest being that she knew the name of the medicine, but this might be an example of her beginning to understand and read her own signs and symptoms. We were all back to sleep within an hour that night.
Her doctor said again
that the best maintenance for her CVS and the
best cure when she is in the depth of an episode is sleep. He was
surprised to know that Ellie's zofran alone does not "knock her out."
And, it's been problematic trying to add the benadryl because who wants
to take a shot of spicy berry flavor when they are on the verge of
puking? He was also concerned with the amount of episodes she continues
to have, even if they are less intense. So, we are trying a new medicine
that is supposed to be preventative and has had some good results in
CVS people. It's called Amitriptyline.
Way, way back in the day they used it to treat depression but soon
realized it was calming people and making them super tired but not doing
anything about the depression...perfect for CVS people! Unfortunately
she is so small that it's a pretty big dose because there would typically
be no reason to give this to a kid. I don't love that, but he says lets
try it for a month or two and see what happens. The
biggest side effect is sleepiness, which in Ellie's case is the point.
The other big side effect is that if you had a heart murmur this
medicine could exasperate it. So, she had an EKG done. Oh, and we have
to watch her weight. She is a fine and healthy weight right now but he
says we don't want her to loose weight at this point. She lost about 3
lbs since November, so we gotta watch that. Other interesting tidbits I found out this appointment:
I asked if he thought people have always had CVS and it's just now being diagnosed. He said yes, that's the assumption. He said that kids with CVS were said to have "weak stomachs" or depression or high anxiety, etc, etc. Now we know it's neurological but there is still a ton to figure out (like migraines, still so much unknown). He also said that for a long time it was assumed that this was mainly a childhood disease (that's what I've read too) but that now there is this whole generation of people who were diagnosed as kids or teens in the last 10-20 years and have grown up and the disease hasn't changed for them so they are moving away from labeling it a childhood disease but still about half the people diagnosed have much, much less symptoms as adults. I asked how rare CVS was (I was wondering if I could meet other parents in our area whose children had it--HA!) He said that Ellie is his only patient right now who has CVS. That was shocking for me. I didn't realize it was quite *that* rare. He said that there are probably about 75/100 or so kids/adults in our area who have diagnosed CVS who just go to Milwaukee to see Dr. Li (the CVS guru)...and that's where we are headed. I asked if we could go see him, Dr. Li, to be connected, ask questions and help with research. He was clearly excited I asked that and said he will call up there himself in the next few days to see about getting us in sooner than later (meaning in the next 2-3 months).
And that's the update! A parenting lesson through all of this--as her Mom I dwell on her episodes, worrying, wanting to "fix" it, constantly checking my phone during the day in case school calls, etc, etc. It has been draining for me personally. BUT, as a happy, amazing, brave, sweet, bossy, confident, intelligent, stable 6-year-old--she generally has an episode in the middle of the night and the next day it is over and that is that. No dwelling, no worrying, just moving forward. It's been a beautiful thing to witness and learn from. There are exceptions of course, on Christmas day she was in the middle of a fairly strong episode. Lots of nausea, lots of pain and she sort of had a massive meltdown. I swear if she knew the word "fuck" she would have used it! She was yelling and crying and just generally pissed off. But, that's ok, it was a really long episode and it was Christmas and she felt awful. A little meltdown seemed right on track! Generally though, she has been amazing and I've made sure to tell her ALL the time how amazing she has been.
Ok, bed...
xoxoxooxo
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