Why We Chose Medic Alert
You have your diagnosis, you've done your research, and you now know more about FPIES than most medical doctors. Every waking moment of your day is spent making sure that your child only eats safe foods. But who else knows the ins and outs as well as you do? Even your spouse would need a book's worth of instructions on how to keep your child safe, because you're the FPIES point person in your family. Now think about what would happen if you weren't there to advocate for your child? Once we got a handle on Matthew's FPIES, that "what if" question kept popping into my head. Our family knows first hand how quickly the unexpected can happen, and how confusing the aftermath can be.
I'm not trying to scare anyone, but I do want to give you food for thought. We were in a roll over accident when Abby, our oldest, was 4 months old, so we know first-hand the chaos that happens after an accident. About how little time you have before someone rushes off in an ambulance. That your diaper bag is still stuck in the car that's sitting upside-down in the middle of an intersection. What it's like when the adults are sent to one hospital by ambulance, and the kids are sent by ambulance to the children's hospital. Luckily none of us were seriously injured, and I was OK enough to ride along with Abby to the children's hospital, though I did have physical therapy for a few months to recover from a rotator cuff injury. Nick and his brother were both sent to the "adult" hospital with their injuries. What if something like that happened again, and none of the adults were OK enough to go with Matthew? Who would tell the hospital what was safe/unsafe for him to eat?
That's why we have medic alert. It's only $30 a year to give us peace of mind...to know that if something did happen to us and strangers were taking care of Matthew, they would be able to call that number and #1 get an explanation of what FPIES is, and #2 have access to what his trigger foods are. We chose to use the Medic Alert service simply because it's the most recognizable. And we went with the standard stainless steel bracelet because it is so easily recognized by medical personnel (you can see an image of the bracelet we chose in the screen shot at the bottom of this page). There are a lot of "cooler" alert bracelets out there, but if it looks like a play bracelet would the nurses and doctors even pay attention to it? Maybe they would, but we're not paying for this for it to look cute, we're spending our money in the hopes that it will save Matthew from a reaction. Well...we're actually spending our money but praying we'll never use it. If you don't have some type of medical alert service for your LO, you should seriously consider it.
To initially sign up I had to call. Medic Alert has a great website, but back when we signed up FPIES wasn't in their drop-down options. They have terrific customer service over the phone, and an expanded list of options for medical conditions. When I called and they asked what Matthew's medical condition was I replied "Food Protein-Induced Enterocolitis Syndrom" fully expecting to repeat myself a few times. Instead, the woman repeated it back to me perfectly, and had added it to his file within seconds...I was already in love ;) I also ordered his bracelet over the phone. He was one year old at the time when I ordered the 5.5 inch, and he's still wearing the same one now at over two years old. It says "Food Protein-Induced Enterocolitis Syndrome" on it, has his member number, and the Medic Alert hotline's 800 number. He always wears it, and has never been bothered by it. I don't even notice it anymore...
I'm not trying to scare anyone, but I do want to give you food for thought. We were in a roll over accident when Abby, our oldest, was 4 months old, so we know first-hand the chaos that happens after an accident. About how little time you have before someone rushes off in an ambulance. That your diaper bag is still stuck in the car that's sitting upside-down in the middle of an intersection. What it's like when the adults are sent to one hospital by ambulance, and the kids are sent by ambulance to the children's hospital. Luckily none of us were seriously injured, and I was OK enough to ride along with Abby to the children's hospital, though I did have physical therapy for a few months to recover from a rotator cuff injury. Nick and his brother were both sent to the "adult" hospital with their injuries. What if something like that happened again, and none of the adults were OK enough to go with Matthew? Who would tell the hospital what was safe/unsafe for him to eat?
That's why we have medic alert. It's only $30 a year to give us peace of mind...to know that if something did happen to us and strangers were taking care of Matthew, they would be able to call that number and #1 get an explanation of what FPIES is, and #2 have access to what his trigger foods are. We chose to use the Medic Alert service simply because it's the most recognizable. And we went with the standard stainless steel bracelet because it is so easily recognized by medical personnel (you can see an image of the bracelet we chose in the screen shot at the bottom of this page). There are a lot of "cooler" alert bracelets out there, but if it looks like a play bracelet would the nurses and doctors even pay attention to it? Maybe they would, but we're not paying for this for it to look cute, we're spending our money in the hopes that it will save Matthew from a reaction. Well...we're actually spending our money but praying we'll never use it. If you don't have some type of medical alert service for your LO, you should seriously consider it.
To initially sign up I had to call. Medic Alert has a great website, but back when we signed up FPIES wasn't in their drop-down options. They have terrific customer service over the phone, and an expanded list of options for medical conditions. When I called and they asked what Matthew's medical condition was I replied "Food Protein-Induced Enterocolitis Syndrom" fully expecting to repeat myself a few times. Instead, the woman repeated it back to me perfectly, and had added it to his file within seconds...I was already in love ;) I also ordered his bracelet over the phone. He was one year old at the time when I ordered the 5.5 inch, and he's still wearing the same one now at over two years old. It says "Food Protein-Induced Enterocolitis Syndrome" on it, has his member number, and the Medic Alert hotline's 800 number. He always wears it, and has never been bothered by it. I don't even notice it anymore...
Can you spot the bracelet?
Once you are a member it's really easy to add your child's triggers, the contact info for their doctors, your emergency contact info, and any other information you'd like listed (you can even list that they are an organ donor). When we found out about Matthew's ketone utilization defect we added "metabolic disorder" to his file just by logging in. The website is easy to use and has a simple layout, so updating your child's file for new triggers (or other info) is painless.
So, that's my two cents! These are our honest opinions, and just in case you were wondering...we were not compensated in any way by Medic Alert to write this. They don't even know we have a website for Matthew, let alone that we're such fans of their service ;)
