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Posted by CMdeux
- September 02, 2014, 11:02:58 AMRight-- and I do think that reaction history has some significance in terms of just HOW crucial it is for:
a) a child to have the epinephrine ON his/her person continuously-- not "a minute or two away", and
b) to have a trained adult nearby at ALL (no really-- ALL) times.
DD's reaction history is such that I'd worry substantially about her living by herself, quite frankly-- she really NEEDS to have another person around much of the time, just in case. She can become incapacitated really rapidly, because we've seen that this is fairly typical for her in anaphylactic reactions-- that is, her judgment and awareness are often the FIRST things to go, and when it goes, it goes QUICK.
Our allergist was the one who exhorted us to strap them onto our then-toddler. He put the fear of God into us over it, in fact-- stating rather baldly that given how fast she anaphylaxes, we needed to basically ask ourselves just how long we were comfortable with her being in cardiac arrest or completely anoxic-- seconds? Or minutes? No brainer at that point, KWIM? The thing is-- if you see a child in distress, you don't "grab the medicine bag from the hook, and go to check on the child." That's not the way that process is going to work-- instinctively-- in a caring adult. EVERY adult that I've ever talked to about this agrees-- 1. child is in distress, 2. quickly GO TO THE CHILD to investigate and offer assistance. Best to make that the right procedure in the event of anaphylaxis.
So she's been wearing them since she was two-ish, and full-time since about age 4. I don't think that she's forgotten them in years, and honestly? She's a fairly absent-minded kid. It's all those years of reminders and the sheer consistence of things that has done it. She feels odd/naked without them.
She knew how to self-administer (theoretically) since she was three. It's only in the last two years that I have any hope that she might actually do so, however-- but she is capable at training others, and has great awareness of the need to do so. She is also suprisingly wise about who she trains-- she doesn't train ALL of her friends, only those that she has a sixth sense about "getting" it.
a) a child to have the epinephrine ON his/her person continuously-- not "a minute or two away", and
b) to have a trained adult nearby at ALL (no really-- ALL) times.
DD's reaction history is such that I'd worry substantially about her living by herself, quite frankly-- she really NEEDS to have another person around much of the time, just in case. She can become incapacitated really rapidly, because we've seen that this is fairly typical for her in anaphylactic reactions-- that is, her judgment and awareness are often the FIRST things to go, and when it goes, it goes QUICK.
Our allergist was the one who exhorted us to strap them onto our then-toddler. He put the fear of God into us over it, in fact-- stating rather baldly that given how fast she anaphylaxes, we needed to basically ask ourselves just how long we were comfortable with her being in cardiac arrest or completely anoxic-- seconds? Or minutes? No brainer at that point, KWIM? The thing is-- if you see a child in distress, you don't "grab the medicine bag from the hook, and go to check on the child." That's not the way that process is going to work-- instinctively-- in a caring adult. EVERY adult that I've ever talked to about this agrees-- 1. child is in distress, 2. quickly GO TO THE CHILD to investigate and offer assistance. Best to make that the right procedure in the event of anaphylaxis.
So she's been wearing them since she was two-ish, and full-time since about age 4. I don't think that she's forgotten them in years, and honestly? She's a fairly absent-minded kid. It's all those years of reminders and the sheer consistence of things that has done it. She feels odd/naked without them.
She knew how to self-administer (theoretically) since she was three. It's only in the last two years that I have any hope that she might actually do so, however-- but she is capable at training others, and has great awareness of the need to do so. She is also suprisingly wise about who she trains-- she doesn't train ALL of her friends, only those that she has a sixth sense about "getting" it.
Posted by maeve
- September 02, 2014, 10:54:21 AMQuote from: CMdeux on September 01, 2014, 10:51:05 AM
I think that the problem here, is that there is a fundamental confusion regarding permission to self-administer, and the expectation of sole responsibility for doing so.
The latter may NEVER be an entirely realistic scenario for some individuals, quite frankly, and there is definitely no bright line which smoothly demarcates the transition between no expectation of self-administration, and expectation of sole responsibility. I'd consider this one of the most difficult things to explain to others, in fact-- that a ten year old may well know HOW to self-administer, but probably cannot be relied upon to do so under the conditions that anaphylaxis presents. Maybe so, and maybe not. KWIM? For individual children, this state of affairs may be a transition that lasts a decade or more.
Honestly, I don't think even adults should be expected to self-administer. That's like asking a person in cardiac arrest to perform chest compressions on themselves.
DD got permission to self-carry in fifth grade.
Posted by Macabre
- September 02, 2014, 10:19:24 AMWell, self carry was written into ds' 504 in fifth grade, but he carried in 4th. Our doctor wasn't really notified. I'm not sure why a doctor would play a role in self-carry. Like a doctor doesn't play a role in most of our day-to-day management outside of our plan, yk?
I may have mentioned it to him as a matter of fact thing at a visit. Maybe.
But I know from an earlier age DS's doc (different one than in 4th grade), would have wanted DS to self administer if he were having anaphylaxis and no one else was able to administer. We certainly would have and told him to. If a trained adult he is with freaks out and can't do it and he is experiencing signs of anaphylaxis, do it. It won't hurt to have it.
The first time he had to have a form filled out for self carry at school was in Minnesota. And the school has that form for everyone. It requires his doctor's sig. But it's also in his 594, so the form is not really necessary.
But again, there's a big difference between self carry and self administer
I may have mentioned it to him as a matter of fact thing at a visit. Maybe.
But I know from an earlier age DS's doc (different one than in 4th grade), would have wanted DS to self administer if he were having anaphylaxis and no one else was able to administer. We certainly would have and told him to. If a trained adult he is with freaks out and can't do it and he is experiencing signs of anaphylaxis, do it. It won't hurt to have it.
The first time he had to have a form filled out for self carry at school was in Minnesota. And the school has that form for everyone. It requires his doctor's sig. But it's also in his 594, so the form is not really necessary.
But again, there's a big difference between self carry and self administer
Posted by LinksEtc
- September 02, 2014, 10:09:16 AMQuote from: Macabre on September 02, 2014, 07:23:59 AM
We never sought "permission" from a doctor. DS self-carried in fourth grade. He should have done it sooner. He list the Epi bag that he carried from class to class a few times. Given his personality, we should have strapped it to him in first grade.
When I gave myself an Epi when he was in second grade, I wanted him there to watch (and I had him doubt for me).
I probably expected him to self administer sometime in Middle School.
I'm sure our school would want the written doc's ok on the forms ... without that, kids/parents at our school could get in big trouble for self-carry/self-admin.
Also, I forget who, but the child of an FASer self-admin epi outside school environment & medical professionals were giving the mom a hard time about the importance of keeping meds out of the reach of children. The mom had been given the ok by the allergist and could fall back on that medical opinion.
Frankly, I think my FA dd is ready to start the shift ... she is extremely responsible, allergy educated, & non-needle afraid for her age ... I am not just saying that because she is my dd. My other dd is completely different and if she had been the FA one, there is no way she would have been ready until much older.
My opinion is that it is generally best for families to work with their allergist regarding this issue. Anyway, for this year, dd won't self-carry/self-admin. There have been times that I have disagreed with an allergist's suggested plan ... and the thing with me is that I will tell them openly that I disagree if I have a problem with something
... but once I agree to a plan with a doc, I stick to it until we decide to change it together.Posted by Macabre
- September 02, 2014, 07:23:59 AMWe never sought "permission" from a doctor. DS self-carried in fourth grade. He should have done it sooner. He list the Epi bag that he carried from class to class a few times. Given his personality, we should have strapped it to him in first grade.
When I gave myself an Epi when he was in second grade, I wanted him there to watch (and I had him doubt for me).
I probably expected him to self administer sometime in Middle School.
When I gave myself an Epi when he was in second grade, I wanted him there to watch (and I had him doubt for me).
I probably expected him to self administer sometime in Middle School.
Posted by SilverLining
- September 01, 2014, 02:57:17 PMQuote from: LinksEtc on September 01, 2014, 09:14:38 AM
How old were your kids when they got the ok to self-administer?
I've had permission since first prescribed an epi-pen when I was thirtyish.
The ability to self-administer during an anaphylactic reaction is a whole different story though. I was unable.
Posted by CMdeux
- September 01, 2014, 10:51:05 AMI think that the problem here, is that there is a fundamental confusion regarding permission to self-administer, and the expectation of sole responsibility for doing so.
The latter may NEVER be an entirely realistic scenario for some individuals, quite frankly, and there is definitely no bright line which smoothly demarcates the transition between no expectation of self-administration, and expectation of sole responsibility. I'd consider this one of the most difficult things to explain to others, in fact-- that a ten year old may well know HOW to self-administer, but probably cannot be relied upon to do so under the conditions that anaphylaxis presents. Maybe so, and maybe not. KWIM? For individual children, this state of affairs may be a transition that lasts a decade or more.
The latter may NEVER be an entirely realistic scenario for some individuals, quite frankly, and there is definitely no bright line which smoothly demarcates the transition between no expectation of self-administration, and expectation of sole responsibility. I'd consider this one of the most difficult things to explain to others, in fact-- that a ten year old may well know HOW to self-administer, but probably cannot be relied upon to do so under the conditions that anaphylaxis presents. Maybe so, and maybe not. KWIM? For individual children, this state of affairs may be a transition that lasts a decade or more.
Posted by LinksEtc
- September 01, 2014, 09:14:38 AMQuote from: CMdeux on June 23, 2014, 05:26:13 PM
our local district tied self-carry to self-administer. DD has never confused those two things in her own mind, btw, and I credit early self-carrying for that distinction.
Dd is going into 3rd grade. I was thinking to start having her self-carry, with permission to self-admin in situations where the nurse is not available like the bus.
Dr-FA-Yoda told me:
Too young to self-admin epi, your dd is.
That opinion was firm so I think that I'll just hold off for another year. The doc would have considered self-carry, but I think that our school sometimes confuses self-carry & self-admin. With dd's reaction/allergy history, I feel fine waiting.
How old were your kids when they got the ok to self-administer?
"When Should Students With Asthma or Allergies Carry and Self-Administer Emergency Medications at School?"
https://www.nhlbi.nih.gov/health-pro/resources/lung/when-should-students-carry-self-asthma-allergies-emergency-medicines-html.htm
When is a child ready to begin taking responsibility for anaphylaxis management?
ETA - She has self-carried her asthma meds for years now & does have permission to self-admin if she needed to. (Pulmo doc ok'd)
Posted by SilverLining
- July 02, 2014, 09:45:33 PMRemember the old e-belt before they added the needle guard? One of our went in the ocean. Survived quite well and the epi stayed dry. Lol
Posted by tigerlily
- July 02, 2014, 08:02:30 PMFirst day of kindergarten. It eliminated the worry of leaving the Epi behind in music or PE. We made sure every teacher knew that he would not be able to self-administer, it just made it faster than trying to track down or go to the office. Beginning of the year training includes that nobody plays with the Epi--he's not allowed to open and show it off, he was trained to report to a teacher immediately if a kid tried to open up the carrier (happened at church once but the childcare aides knew the drill). It wasn't a right to self-carry in our state and I didn't want to lose his ability to carry due to a clueless kid.
It is so second nature that he's been known to jump into the pool with it on.
It is so second nature that he's been known to jump into the pool with it on.
Posted by bugbee
- June 23, 2014, 08:29:09 PMOur son is going to start self-carrying next school year. He'll be in second grade. Didn't wait until now for any particular reason...just sort of decided it was time.
Posted by CMdeux
- June 23, 2014, 05:26:13 PMDD has self-carried since she was about three years old. She is one of the most reliable people I know for knowing WHERE her epis are at all times, and for NEVER, EVER forgetting them. They've hung in the same place in our house for 15 years, and she has worn them cross-body everywhere OUT of it. School/camp/classes included. (She did not wear them in daycare at 1-2yo; they stayed in her cubby, which was always up high) She has never played with them, and no other child has ever gotten them from her.
This was one factor in our decision to homeschool-- our local district tied self-carry to self-administer. DD has never confused those two things in her own mind, btw, and I credit early self-carrying for that distinction.
This was one factor in our decision to homeschool-- our local district tied self-carry to self-administer. DD has never confused those two things in her own mind, btw, and I credit early self-carrying for that distinction.
Posted by MandCmama
- June 23, 2014, 02:48:36 PMBoth of my boys self carry now (5 & 7). M started prior to K, C started prior to full day prek. We use spi belts. I had both boys start in the summer before they began to carry with just a trainer in the belt (to be sure they wouldn't take it out and play with it). Their belts hang on a hook, at their eye level, on their bedroom door frame. I check as I load them into the van each morning, but rarely do they forget....it's second nature now, which is what I was going for.
Posted by SilverLining
- June 23, 2014, 08:51:30 AMKindergarten, so 4 or 5 years old.
I wanted teacher to carry but school worried it could get forgotten since students went to different rooms and sometimes had different teachers. They were concerned a sub or once-a-week teacher might forget to bring it to the playscape or the gym or the computer lab. Better to have him responsible, both so it was always one person and to teach him to be responsible for it. They did NOT just wash their hands of responsibility. The teachers did remind him, but since he wore it on a belt he never forgot it.
Left it in the bathroom once
but it was returned with a gentle reminder not to leave it there, no scolding.
I wanted teacher to carry but school worried it could get forgotten since students went to different rooms and sometimes had different teachers. They were concerned a sub or once-a-week teacher might forget to bring it to the playscape or the gym or the computer lab. Better to have him responsible, both so it was always one person and to teach him to be responsible for it. They did NOT just wash their hands of responsibility. The teachers did remind him, but since he wore it on a belt he never forgot it.
Left it in the bathroom once
but it was returned with a gentle reminder not to leave it there, no scolding.Posted by Macabre
- June 23, 2014, 08:22:54 AMFourth, but we should have done it sooner because 1) he lost his Epi bag on more than one occasion (he carried it to specials, etc), and 2) he has probably never felt that the epis are second nature to him. And he's 16 now (and does have them with him in his pockets every day, but I don't think he feels naked without them, if that makes sense).
I wish we had started in first or second grade.
The Spibelt is a great option, but epis do wear holes through it we found. Still, at that price it was so much more affordable than what we had been using. It's very slim.
I wish we had started in first or second grade.
The Spibelt is a great option, but epis do wear holes through it we found. Still, at that price it was so much more affordable than what we had been using. It's very slim.