While I have a few moments to spare, I'd like to thank all of our family and friends who came out to Sherwood Brewing last night for the Utica Unicorns/FXAM fundraising night. Some of you traveled a great distance on a Thursday night to hang out with us, and that hasn't gone unnoticed (Dennis & Beverly!). Our local friends, so many of you came out tonight and between the rush of people as well as trying to calm the kids' anxieties, it was a whirlwind. It almost felt like a wedding reception, with the blur of activity, people, snippets of conversation, and pausing for a few seconds to take a sip or bite of something.
Adam, Bruce, & Curtis, thanks for stepping out of your comfort zone and giving Sherwood a try. :) You guys completely made Lori's night, more than we can express in words.
FXAM crew, this evening wouldn't have happened without you. You welcomed us into the fold, showed us that we're not alone, and even though we can't participate as frequently as we'd like, you're always in our thoughts. We wouldn't have gotten as far as we have with the kids without your support and guidance, as well as just the occasionally well-placed "it's gonna be okay."
From pediatrician and dentist recommendations to even something that seemed as simple as melatonin, they've been completely life-changing in our house. To be able to meet a medical professional whose first question is NOT "fragile what?"
And of course, this evening DEFINITELY wouldn't have happened without Sherwood Brewing Company and the old Alpha Team & regulars (Mary, Erica, Meridith, Rob). Lisa, Ray, and Corey, thank you all so much for this and so much more. We had to leave in a rush, so we weren't able to say hi & bye to everyone, or even see who came after we left.
But know that you are all loved and appreciated. We feel beyond humbled and grateful for your love, support, patience, and friendship.
Showing posts with label FXAM. Show all posts
Showing posts with label FXAM. Show all posts
Friday, August 19, 2016
Thursday, July 9, 2015
Street Smarts
A short one.
Henry was taken to see a neurologist a while ago in the hopes of figuring out why he's so awful at sleeping, whether it's in going to sleep or staying asleep. Right now, we dose him with melatonin so that he'll fall asleep within a half-hour; before the melatonin, it was a nightly battle of 1½ to 2 hours to get him settled down enough to fall asleep.
Every. Night.
The reason: he was just hyper and could not calm down. We got a suggestion from our FX support group members that a common manifestation for kids with FXS is a non-stop production of cortisol, which puts them physically in a constant fight-or-flight mode. To combat that, we were given the suggestion of giving him melatonin supplements to counteract the overproduction of cortisol.
The first night we gave it to him was a miracle. He went to sleep within a half hour, and we haven't looked back since. A bottle of melatonin liquid is a staple now, and we've come dangerously close to running out a few times. That meant dropping everything and going to buy more, because, like beer, we shall not run out!
The neurologist was unable to examine him because, well, as anyone who knows Henry knows, he is not comfortable around strangers. And it's magnified when he's in a medical facility, because as far as he's concerned, only Bad Things have happened at medical facilities. The neurologist recommended we submit him to a sleep study through Children's Hospital.
Okay, fine.
Tonight was his appointment, and tonight was the night when the inner beast was unleashed.
Since I had class tonight, Lori was to take him in just before bedtime and spend the night in the observation lab. Henry apparently went Incredible Hulk. Because what the neurologist failed to tell us was that the study required all kinds of sensors and wires to be stuck on, around, and even in him (up his nose).
Just hearing that, I could tell you that it was not going to happen. He reacts to hair cuts like we're killing him. It took all of my strength and dexterity to restrain him for a mere hair cut. And yes, I had to restrain him.
Unfortunately, Lori took the brunt of Henry's explosion. Scratches, bites, punches, and even a fistful of hair ripped out. Lori said that she had never seen an expression of contorted terror on Henry's face like that before, or the kind of back arching and physical contortions he was in to try to get away.
Then the tech offered to try again.
Needless to say, they came home. I knew something was wrong when I saw Lori's car in the garage when I pulled into the driveway coming home from class. She had just gotten Henry to sleep -- calmly and in his own bed -- when I came in the house.
So the moral of this story is this.
To all of my friends who are in the medical field and those studying to go into the medical field, please remember your street smarts on top of the book smarts. Don't treat kids with special needs like a by-the-book numbers game, because unfortunately, we've run into more doctors and nurses ill-equipped to handle special-needs kids than we could have reasonably expected.
I mean, isn't it a thing in one of their classes or something? If not, shouldn't it be? Even if it's just a 10-minute Powerpoint titled "Don't Treat Parents of Special Needs Kids Like Morons Who Don't Know What They're Talking About, They Know Their Kid Better Than We Will?"
Slide 1: should you treat your special-needs patient's parents like uneducated fools?
Slide 2: no.
End of presentation
The neurologist was so entrenched in book knowledge that she apparently had no ability to extrapolate or think beyond the procedure. I get that there are liability issues, but come on. If the kid wasn't going to let you near him, let alone touch him, why would you think that hooking him up to what amounted to a transmission flush machine would be successful?
In the past, when Henry got another ear infection, we went to an urgent care clinic and I told the attending physician what his Dx was to be, and what needed to be prescribed. With the way I presented the information to him, he asked if I was a doctor.
No, I'm a parent who is also a troubleshooter by profession so I know how to present the data of a problem in order to seek resolution. Whether it's a computer or a human body, the technique is the same. Ask the right questions, think analytically, think critically.
On top of the ENT doctor who got annoyed that Henry was terrified of him, the med-student kids who asked inane and irrelevant questions of us while Henry was coming down with bronchial pneumonia, and the pediatric surgeon who decided to hold class for his med student kids in our room while Henry was trying to sleep, please, please, please remember that your patients are people, not chapters in a book.
And just because you may have seen countless similar cases in the 20, 30, 40 years you've done this, not all cases will have the same outcomes. Don't get lazy.
Henry was taken to see a neurologist a while ago in the hopes of figuring out why he's so awful at sleeping, whether it's in going to sleep or staying asleep. Right now, we dose him with melatonin so that he'll fall asleep within a half-hour; before the melatonin, it was a nightly battle of 1½ to 2 hours to get him settled down enough to fall asleep.
Every. Night.
The reason: he was just hyper and could not calm down. We got a suggestion from our FX support group members that a common manifestation for kids with FXS is a non-stop production of cortisol, which puts them physically in a constant fight-or-flight mode. To combat that, we were given the suggestion of giving him melatonin supplements to counteract the overproduction of cortisol.
The first night we gave it to him was a miracle. He went to sleep within a half hour, and we haven't looked back since. A bottle of melatonin liquid is a staple now, and we've come dangerously close to running out a few times. That meant dropping everything and going to buy more, because, like beer, we shall not run out!
The neurologist was unable to examine him because, well, as anyone who knows Henry knows, he is not comfortable around strangers. And it's magnified when he's in a medical facility, because as far as he's concerned, only Bad Things have happened at medical facilities. The neurologist recommended we submit him to a sleep study through Children's Hospital.
Okay, fine.
Tonight was his appointment, and tonight was the night when the inner beast was unleashed.
Since I had class tonight, Lori was to take him in just before bedtime and spend the night in the observation lab. Henry apparently went Incredible Hulk. Because what the neurologist failed to tell us was that the study required all kinds of sensors and wires to be stuck on, around, and even in him (up his nose).
Just hearing that, I could tell you that it was not going to happen. He reacts to hair cuts like we're killing him. It took all of my strength and dexterity to restrain him for a mere hair cut. And yes, I had to restrain him.
Unfortunately, Lori took the brunt of Henry's explosion. Scratches, bites, punches, and even a fistful of hair ripped out. Lori said that she had never seen an expression of contorted terror on Henry's face like that before, or the kind of back arching and physical contortions he was in to try to get away.
Then the tech offered to try again.
Needless to say, they came home. I knew something was wrong when I saw Lori's car in the garage when I pulled into the driveway coming home from class. She had just gotten Henry to sleep -- calmly and in his own bed -- when I came in the house.
So the moral of this story is this.
To all of my friends who are in the medical field and those studying to go into the medical field, please remember your street smarts on top of the book smarts. Don't treat kids with special needs like a by-the-book numbers game, because unfortunately, we've run into more doctors and nurses ill-equipped to handle special-needs kids than we could have reasonably expected.
I mean, isn't it a thing in one of their classes or something? If not, shouldn't it be? Even if it's just a 10-minute Powerpoint titled "Don't Treat Parents of Special Needs Kids Like Morons Who Don't Know What They're Talking About, They Know Their Kid Better Than We Will?"
Slide 1: should you treat your special-needs patient's parents like uneducated fools?
Slide 2: no.
End of presentation
The neurologist was so entrenched in book knowledge that she apparently had no ability to extrapolate or think beyond the procedure. I get that there are liability issues, but come on. If the kid wasn't going to let you near him, let alone touch him, why would you think that hooking him up to what amounted to a transmission flush machine would be successful?
In the past, when Henry got another ear infection, we went to an urgent care clinic and I told the attending physician what his Dx was to be, and what needed to be prescribed. With the way I presented the information to him, he asked if I was a doctor.
No, I'm a parent who is also a troubleshooter by profession so I know how to present the data of a problem in order to seek resolution. Whether it's a computer or a human body, the technique is the same. Ask the right questions, think analytically, think critically.
On top of the ENT doctor who got annoyed that Henry was terrified of him, the med-student kids who asked inane and irrelevant questions of us while Henry was coming down with bronchial pneumonia, and the pediatric surgeon who decided to hold class for his med student kids in our room while Henry was trying to sleep, please, please, please remember that your patients are people, not chapters in a book.
And just because you may have seen countless similar cases in the 20, 30, 40 years you've done this, not all cases will have the same outcomes. Don't get lazy.
Thursday, July 10, 2014
Research Study
This week, we met with a research scientist and her graduate assistant who traveled up to Michigan from South Carolina to observe the kids and interview us. They have been conducting research into Fragile X Syndrome and have a need for volunteer subject families. We found out about the project through our local Fragile X support group, so a few months ago, we made contact with them.
The first thing I suppose I should mention is that there is no actual treatment for the kids to be had here. This wasn't a medical evaluation or a "check-up." This was pure science. We're not going to receive a prescription or a magic pill to make their FXS go away (wouldn't that be awesome?).
What this does enable, though, is more research, data collection, and analysis so that future treatments can be made possible. While we may not benefit immediately or even in the near term, this aids in the effort for long-term results and conclusions. And who knows? Maybe our kids are the trigger or that last piece of the puzzle to help make that pill that makes FXS go away. :)
The experience was similar to the kids' evaluations at MISD for their early-intervention programs -- lots of questions and evaluations to determine a baseline for their development and abilities. That was rather emotionally draining, because it shined that spotlight again on where the kids are versus where kids who don't have developmental or cognitive disabilities are at their respective ages. But, they needed to know where the kids are in order to gather data and conduct observations, so we had to just buckle down and do it.
What was interesting was that their research apparently has a shortage of girls in their studies that fall within the age brackets that they need, and Evie was the perfect subject. Near the end of the year or next year, they want to do a follow-up with her, and we're not sure yet whether that means they're coming back up to Michigan or whether they're going to fly us down to South Carolina (depends on their grant funding).
Nonetheless, it's both exciting and scary. It's exciting that we get to help with Fragile X research in the hopes that future children and families can benefit. It's scary too because it also means that it's all the more real. Then again, I suppose one wouldn't know it to just look at these guys:
The first thing I suppose I should mention is that there is no actual treatment for the kids to be had here. This wasn't a medical evaluation or a "check-up." This was pure science. We're not going to receive a prescription or a magic pill to make their FXS go away (wouldn't that be awesome?).
What this does enable, though, is more research, data collection, and analysis so that future treatments can be made possible. While we may not benefit immediately or even in the near term, this aids in the effort for long-term results and conclusions. And who knows? Maybe our kids are the trigger or that last piece of the puzzle to help make that pill that makes FXS go away. :)
The experience was similar to the kids' evaluations at MISD for their early-intervention programs -- lots of questions and evaluations to determine a baseline for their development and abilities. That was rather emotionally draining, because it shined that spotlight again on where the kids are versus where kids who don't have developmental or cognitive disabilities are at their respective ages. But, they needed to know where the kids are in order to gather data and conduct observations, so we had to just buckle down and do it.
What was interesting was that their research apparently has a shortage of girls in their studies that fall within the age brackets that they need, and Evie was the perfect subject. Near the end of the year or next year, they want to do a follow-up with her, and we're not sure yet whether that means they're coming back up to Michigan or whether they're going to fly us down to South Carolina (depends on their grant funding).
Nonetheless, it's both exciting and scary. It's exciting that we get to help with Fragile X research in the hopes that future children and families can benefit. It's scary too because it also means that it's all the more real. Then again, I suppose one wouldn't know it to just look at these guys:
Sunday, November 3, 2013
FXAM
Yesterday, we went to our first meeting with the Fragile X Association of Michigan. I didn't know what to expect, really, because it was my first time attending any kind of a support-group type of meeting. And calling it a "support group" is simultaneously accurate and inaccurate.
It's a support group in that everyone there is a parent of a child with Fragile X Syndrome, so they get it. Even though every child is different, there are and will be aspects that set the kids apart from the track of typical kids, or kids who trundle along the average development path.
But at the same time, it's also not quite a support group in that stereotypical image of a 12-step program or "Anything Anonymous" type of group. We're not there to say that it's been two weeks since our last sensory-overload public meltdown and yay, congratulations to us for achieving that milestone.
No, things like that don't exist.
Nevertheless, Lori and I immediately felt like we belonged there. It was a small group that night, and the president of the association figured it was because of the Michigan-MSU game, but it was beneficial to us because it allowed us to experience the group meeting without feeling overwhelmed by the sheer number of people.
It allowed us to get comfortable with the group and what others are dealing with and that we aren't alone in this. There are other families out there who are struggling with acceptance and acknowledgement, fighting with doctors and educational institutions to take our children's needs more seriously, just as we are.
The very things I was frustrated with, when doctors are confronted with a child's condition and development schedule that don't fit neatly inside prescribed compartments of How Things Should Be. That came as a huge relief, to actually meet people in real life who truly understand what we're going through and what is in store for us in the future.
The group won't meet again until February, so we'll still be the New Family then. But by getting our feet wet, I think we'll be a bit more comfortable next time now that we know where the meetings are, how to get inside, and what to expect.
It was nice to be able to talk and listen to people who understand where we are without having to hear "fragile what?" or others making presumptions that "oh, he'll get there! In the meantime, you should do this, that, and this, too!!! My kids LOOOOOOVE it...."
(yeah, your kids don't have FXS or any other genetic disorder that'll affect them for the rest of their lives)
It was nice not to have to run that parenthetical sentence in my head from behind a plastic smile and nod.
It's a support group in that everyone there is a parent of a child with Fragile X Syndrome, so they get it. Even though every child is different, there are and will be aspects that set the kids apart from the track of typical kids, or kids who trundle along the average development path.
But at the same time, it's also not quite a support group in that stereotypical image of a 12-step program or "Anything Anonymous" type of group. We're not there to say that it's been two weeks since our last sensory-overload public meltdown and yay, congratulations to us for achieving that milestone.
No, things like that don't exist.
Nevertheless, Lori and I immediately felt like we belonged there. It was a small group that night, and the president of the association figured it was because of the Michigan-MSU game, but it was beneficial to us because it allowed us to experience the group meeting without feeling overwhelmed by the sheer number of people.
It allowed us to get comfortable with the group and what others are dealing with and that we aren't alone in this. There are other families out there who are struggling with acceptance and acknowledgement, fighting with doctors and educational institutions to take our children's needs more seriously, just as we are.
The very things I was frustrated with, when doctors are confronted with a child's condition and development schedule that don't fit neatly inside prescribed compartments of How Things Should Be. That came as a huge relief, to actually meet people in real life who truly understand what we're going through and what is in store for us in the future.
The group won't meet again until February, so we'll still be the New Family then. But by getting our feet wet, I think we'll be a bit more comfortable next time now that we know where the meetings are, how to get inside, and what to expect.
It was nice to be able to talk and listen to people who understand where we are without having to hear "fragile what?" or others making presumptions that "oh, he'll get there! In the meantime, you should do this, that, and this, too!!! My kids LOOOOOOVE it...."
(yeah, your kids don't have FXS or any other genetic disorder that'll affect them for the rest of their lives)
It was nice not to have to run that parenthetical sentence in my head from behind a plastic smile and nod.
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