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What does a kid need to know and when, asthma-wise?

Asthma was just one of the things we managed when DD was little, along with her bleeding disorder.

But with the bleeding disorder, we'd learned about managing chronic health issues from our hemophilia treatment center (HTC) … the hemophilia and bleeding disorder community is BIG on independence and teaching advocacy. They actually have a transitions chart with skills that a kid needs to be able to demonstrate by certain ages.

  • By age four, a kiddo with a bleeding disorder ought to be able to answer this question:
    • Can you say what you have that makes you come to the special doctor? Or get special medicine?
  • Between 5 – 8, that same kiddo ought to be able to explain how to report a bleed to a grownup and why he needs to wear a medical ID bracelet.
  • Between 9-12, the real push for independence is on.  A kiddo needs to be able to name his doctor, his nurse and other members of his care team.
  • And by age 12, the HTC wants to see kiddos be able to give themselves infusions (treatments for bleeds) without any help — or at least, with parents watching but not helping. They even encourage kids to place their own orders of factor with parent supervision.
  • By age 15, a kiddo should be able to self-infuse and tell you not only the name and location of his doctor, but also who his health care insurance carrier is and carry his insurance cards at all times, as well as order and/or pick up his meds. 

I've adapted these to asthma and food allergies, but sometimes I still feel a bit at sea, like maybe I've missed things. My DD is 16, and college is on the horizon.

So what do you think kids ought to know? And when should they know it?

I'm particularly interested in hearing from both parents who manage their kiddo's asthma — like @pinkladycha and @Shea and @CAPuttPutt and @Tiffany F. and @Anne P – and also adults who've managed asthma from a young age, like @Nemo88 and @Eric E. Viereck, Jr. and @mrklove. 

Thanks in advance!

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  • Nemo88

    Well one suggestion I have for someone with a chronic health condition going into college is talk to each professor individually about your condition and setup a plan to help avoid homework/attendance issues. I found talking to my professors about my health and what can go on they were able to work with me. Some let me work ahead so if something happens I had a safety net once they knew how likely it would be I would miss days at a time if I got really ill.  While others would give me reasonable extensions on things so I could get caught up while still focusing on the current assignments/tests and quizzes. Oh and make friends with a couple people in each of your classes they can be great lifelines for helping you get caught up like making a copy of notes for you so you can study I will think more on it cause I am tired I am not remembering it all but I will try and think of other tips and tricks that worked for me ttyl.

  • CAPuttPutt

    Yes, @Nemo88! Talking to professors one on one is what I did as well. It helped tremendously (still does). Being upfront, and honest will generally head off any issues with school. Every now and then you'll run into a butt of a professor…and then if they give you trouble, you go over their head to the head of the department with your facts in hand.

    @K8sMom2002 I'm no expert at this, but here's a timeline of things that we did with our son who has both food allergies and asthma. Mind you he's only 4, so the older ages I based on my experience growing up with severe migraines (we didn't know about my food allergies and nerve issues at the time).

    • Between 2-4, a child should at minimum wear an ID bracelet for food allergies and/or asthma. At 2, saying something simple like “no dairy (for me)” or pointing to their chest when it’s tight should be practiced at home so that later on it will be second nature. I also had a pin/button on our son’s lunch bag that said “No Dairy. I have food allergies.”, because he wasn’t quite old enough to fully verbalize his food allergy in every situation. At this age, we didn’t know about his asthma yet.
    • By 4, a child should be able to ask questions about food, make statements to caregivers, etc. such as “does this have dairy in it?” or “I can’t have that. It has milk.” or “Call my mom/dad if you have questions about my food.” This is what my 4 year old does now in PreK. Last week when they had their Thanksgiving meal, a parent who was trying to be helpful went around giving the kids Doritos on their plates. When the adult got to our son, he gently pushed the bag away with his hand and said “I can’t have those, they have milk in them.” <–proud mom moment fyi
    • Between 5-8, a child should be beginning to look over food labels for themselves, because parents aren’t going to be with them in every situation. Food labels today are good about putting common allergens such as milk, nuts, shellfish, etc. in bold print (most of the time). The child should also be able to fully report any “funny feelings” or it “being hard to breathe” to any caregiver, teacher, etc. 
    • Between 9-12, while most schools won’t allow a child to carry an epi-pen on their person, the child should know how to use it independently should the need arise. Looking over food labels should be second nature to them at this point, and they should be able to point out any questionable ingredients.
    • Between 13-21, a child with food allergies and/or asthma should know how to manage their condition pretty well, but will have to learn how to adapt to not being like others, as in learning that it’s ok that they are “different”. Resentment will most likely set in during these years and the child will begin asking questions like “why me?” Tears will be shed. When I began having migraines during my 7th grade year, I went through a whole host of emotions. “Why me? Why can’t I be normal like every other kid? Why can’t they figure out how to get rid of these headaches? Why do I have to miss so much school? Why don't these medicines work for me? This isn’t fair.” I spent weeks in and out of hospitals. I missed out on prom, walking at graduation, group sports, pep-rallies, football games, etc. and I resented it big time. I ended up graduating when I was 16 because I was so sick, so I missed all of my senior year and all of those memories that are normally made. This time frame is rough, mentally, physically and emotionally. They will need a good shoulder to cry and lean on.

    College can be scary for someone with health issues, but these days there are so many options – you just have to do some pre-planning and research. 

    I hope this helps some.

  • K8sMom2002

    Nemo, working ahead is a great idea! DD's had it rough this semester, both in her college course (US History) and her high school classes because she wound up having oral surgery AND recover from a wreck. So she missed a LOT of school, and it was tough. 

    Thank goodness her professor was understanding, but you're right — she had no friends in her history course. I will encourage her to make friends! It's tough because it's a first-thing-in-the-AM course, and she has to rush straight from there to make her next high school class on time. It will be the same for her US Government course she's taking next semester. This summer she wants to take a single English 101 course … I'm hoping she'll make some friends in that class. 

    CaPuttPutt, hugs on the migraines — did they ever figure out what was causing them? 

    Your timetable sounds like a great framework! We were so lucky that her school actually prefers that she self-carried her epinephrine auto-injector and her other meds, but we ran into trouble when she hit middle school … they had a zero-tolerance drug possession policy and all meds besides auto-injectors and inhalers had to be in the nurse's office. We did manage to work through that and get her permission to carry her bleeding disorder meds. 

    What helped you through that "why am I different?" struggle? I sense that with DD, although she's never really known much else, so it is what it is. Still, I know that as she approaches graduation and college, things will have a way of popping up. 

  • CAPuttPutt

    @K8sMom2002  Thank you

    The migraines were being caused by more than one thing, which is why conventional "migraine medicines" wouldn't work. While I do occasionally get just a good old fashioned migraine these days (had one today actually – usually from stress or lack of sleep), the majority of those back then were from my undiagnosed food allergies to gluten and dairy, along with my undiagnosed fibromyalgia. I suffered for years, going through countless trials of drugs that wouldn't touch them and figuring out along the way that I'm highly allergic to a LOT of prescription drugs (around 13+ at last count – one of which will cause me to stop breathing). 

    Growing up, I was a fairly healthy child until the day I landed in the hospital for a really bad infection when I was about 5. My grandmother was teaching me how to crochet, and I dropped the crochet needles on the floor. While crawling around to pick them up, a small, rusty, metal one stuck through my jeans and into my knee causing a severe infection in my body. I was in the hospital for a week with an immobile knee the size of a grapefruit. After that, I seemed to stay sick and hurt all the time. 

    Coping with the "why me" issue took a while to deal with. And I won't lie, there are still days when I am overwhelmed that I throw my hands up and say "why?!". I think what helped the most was knowing that my family believed me 100%. They knew I wasn't putting on or faking for attention. When I woke up in the mornings with a migraine, my mother and father knew it was real. And heaven help the teacher who one day insinuated that I was faking a headache to get out of taking a math test…..my mother (who worked at the school as well) unloaded on her!! I knew I wasn't crazy, I knew how bad I was hurting, but there were days that were really tough to get through. I cried a lot….and that was ok. I needed a way to get through my emotions. I lost boyfriends and friends because of my illness. I lost a lot of the innocence of being a kid, because I had to grow up so fast so young. 

    Back then there weren't support groups and forums like there are today, and fibromyalgia back then was virtually unheard of. Having a great support group of people who believe in you and who are going through similar things helps tremendously. It lets you know you're not alone in this fight. And having really good medical professionals at your right hand makes it seem as though you have a secret weapon in your corner….a weapon that is fighting just as hard as you are. 

    Today, I appreciate the fact that I'm different. I'm unique and I know that most people couldn't begin to handle what all I've been through. It has made me such a strong person. It took me several years to complete my AA because of my being sick and undiagnosed for the majority of it, but I never quit. And now I am halfway through my bachelors degree. Is it difficult, and at times aggravating still….yes. But it is who I am. I've never been a "typical girl/woman" so I figure why start now? lol

  • K8sMom2002

    Love this! I was diagnosed with fibro in my early 20s … I went from being a super strong person to someone who couldn't open a peanut butter jar, seemingly overnight. It took many years and a super rheumi to help me get my life back. 

    I'm so glad that you got the care you needed and your family was there to support you. That tells me another big piece of the puzzle — I need to give my DD unwavering support as she begins to negotiate adulthood with a lifelong disorder. Thank you for sharing!

  • CAPuttPutt

    @K8sMom2002 Yes, getting your life back on tract takes a long time after a fibromyalgia diagnosis. I didn't realize how bad I had gotten until I was on the road to mending. I used to have to take naps on my lunch hour, or nap under my desk at work because I was so sleep deprived from hurting so badly all the time. I will say, it took about 3 1/2 years for me to get leveled back out to where I was functional on a daily basis. Today my specialist says I'm one of his most successful patients, to which he partially credits my type A personality as being responsible for….that and my being stubborn as all get out, lol 

    I miss being able to go to the gym and work out. That was something I used to love so much! Today though it's just not possible. But I have to stay active, I can't sit for too long, otherwise I will start to hurt really quickly. Do you take a daily medicine for your nerves?

  • K8sMom2002

    Caputtputt, I'm one of the lucky ones. A second opinion helped me with physical therapy (years and years of physical therapy) and lifestyle modifications. I no longer have to take daily meds, but only medication if I have flares. And yes, I do have terrible migraines as well, and sometimes that awful fatigue will get me — especially if I allow myself to get too stressed or too sleep deprived. 

    Like you, I have to remain active. Walking is my biggest exercise, but my asthma means I can no longer do it outside for much of the year. So I walk indoors.

    I want my daughter to know how to advocate for herself and learn how to navigate the medical world. It took me many, many years to understand that world and to advocate for myself. 

    It sounds like you are helping your kiddo do the same thing — and from a very early age!

  • Shea

    K8SMOM, Im joining on this late, but I think a huge thing is to actually have her join a forum/support group or to start one.

    I was very susceptible to others opinions and in college, surrounded by a certain group and away from your home, it is easy to lose sight of important things and adopt things from your group. AND if you get sucked into the party mode at all– judgment is the first to go and parents are the last to know.

    I had a few big slip ups food-allergy-wise in college that landed me in the ER. I swear boyfriends will mess with your head badly, you think they care and will look after you but they end up giving you stuff they swear is nut-free and they dont know how to advocate for you in the er, so you are just struggling not to pass out AND get yourself seen. 

    All these former kids, now suddenly adults, with no supervision, and just no know-how, and no support or family, just the people they fall in with…. I knew diabetics that got themselves into heaps of trouble medically, and depressed people drinking on meds and crashing cars… just craziness was my college experience.

    Working, and going to school, juggling a boyfriend and roommates, being immature and a horrible cook, and I had no guidance or know-how on how to manage my allergies either…. so… for college kids…

    I dont even know where to begin with advice:

    -a support group online

    -getting set up with local doctors and knowing the local hospitals

    -registering your health info with the university and dorm/living quarters

    -Having an action plan, emergency contacts, and rist-band carried on you,

    -having emergency meds you carry with you and back-ups at your place

    -having a friend (not boyfriend preferably, but close college friend) that knows your parents's number and your medical stuff. 

    As far as for other ages, for allergies: if your parents teach you to use chefs cards and/or check labels and allergy menus online, that is a great start. Also teach the importance of carrying emergency meds: epipens, inhalers, etc. I have been drilling my son in those areas and in standing up to others who dont understand but act like theyre a doctor themself… "a little wont hurt", "im pretty sure it doesnt have soy", "just take a bunch of benadryl"… and they have to say

    "no, it is life-threatening, and I follow my treatment plan". 

     

  • K8sMom2002

    Shea, that's an excellent point — not just for food allergies, but for asthma as well. DD is blessed to have a great group of friends who understand her food allergies and her asthma, and so she doesn't have to explain things anymore.

    She REALLY hates to explain things. 

    But you're right … she'll lose that built-in support group when she makes the move to college. That's a good point that I need to help her figure out a way she does feel supported.

    As for boyfriends … She doesn't have one as of yet … she says she doesn't have time, what with studying and activities. Her dad says that is JUST fine, . 

  • Shea

    Haha, for sure! Boyfriends can be good and bad lol. But theyre typically more afraid to call parents than friends. I didnt really date until college, and I didnt want one at first either, but, it happens, lol. And it was nice and fun and all, but he was kinda an idiot, and I would go with what he said/did a lot–which was a mistake! Live and learn. 

    With my allergies to dander, I would shrug off my feelings and listen to others too, and suffer through, but once I decided enough was enough, having this support group has helped me keep strong and stand up for myself, not be in denial or get bullied, so I think if Id had more info on allergies and a support group in  college it would have really helped me. But, I know shes agead of where I was because shes got you as a mom, and you are great at organizing info and keeping her educated in managing her stuff, so Im sure she will do well!

  • K8sMom2002

    Awww, thanks, Shea! Me, personally, I've found that less is more when it comes to "educating" her … otherwise, she'll do the typical teenage thing and  

    So maybe a support group of her own will help. She has an informal support group of girls with bleeding disorders from the camp friends she sees every summer. I know they share bits and pieces of info, but it's kind of like us on this community — we don't talk asthma and allergies ALL the time, but the info we share is valuable to me.

    The one thing that I would hope for is that she would have access to a community that is moderated and has a good scientific/medical foundation, like this one. It's amazing what we THINK kids know and understand, but they don't actually "get" it.

    BTW, I think you're an awesome mom to your Tommy … you really put a lot of heart and soul into making sure he gets a full and active life, even down to his home schooling! That takes more energy than I've got!

  • Shea

    Thanks 😊 The only part of my whole health situation that Im thankful for is that it allows me to stay at home, and shop, cook, clean, and spend time with Tommy, and be part of his education. We both really enjoy the florida virtual school.

    As for teenagers, at least if you tell them, even if they ignore you or roll their eyes, they still heard it, and it does make a difference (even if they dont let you know it, they appreciate it)!

  • Tiffany F.

    I really like this and I think similarly we can relate this to asthma.   Pretty much just what you wrote – a child should understand why they were a medical alert bracelet or go to a special doctor. They should know their doctors name by a certain age, know how to get help. Know how to administer their own meds by a certain age.

    My daughter is 2 and a half, and she tells me when she has a cough.  I was distracted while driving and hadn't noticed she coughed a time or two (nothing major, just your typical clearing of throat) but she immediately took notice and exclaimed to me "mama I cough!  I need medicine!"  To reinforce it, we pretended to take her inhaler.  We did all the motions I just didn't press the puffer.  I praised her and told her how great it was that she had told me.  I am hoping she starts recognizing, over time, things in herself and being comfortable telling any adult that is caring for her (at daycare, etc) that something is off.  We were able to establish that relationship with her as young as she is with a cough being a sign she needs her rescue inhaler.   Now, as a reasonable adult I know she didn't need it, but I am glad she brought how she felt to my attention. 

    So I think very young we can start establishing with kids relationships like that — symptoms with medicine. and making a positive association.  

    Granted, we haven't hit the teenage years or the older adolescent years she may take advantage of that  but for now, I am happy with her learning to tell us.   As soon as she can start understanding we hope to educate her more on her asthma and help her also make the connection that if she has trouble she needs to relax and stay calm above all, and quickly get her meds.  I dont want to scare her with her condition.

  • K8sMom2002

    Wow, TiffanyF … that's great that your DD has already made the connection and is able to verbalize what she's feeling and what needs to happen! Way to go, Mama!

    And you know … as great as my own DD is, I don't think she's the exception. I've seen and heard of many, many kiddos who manage a chronic condition, and they all seem to have a deep empathy and compassion for others. So I don't think you have to worry about her taking advantage of it!

    I hear you on not wanting to scare our kids — that's a tricky balance, isn't it? We're dealing with something we have to take seriously, but we don't want our kids to obsess over it. What things do you do to help her be AWARE but NOT afraid?

  • Tiffany F.

    @K8sMom2002 this relates to a post I just created.  I think the way I have talked to her and responded when she "coughs" or expresses discomfort or her own concern really dictated this.  I am trying to keep it positive. " It's OK! You did a GREAT job telling me – lets take your medicine so you feel BETTER"  Trying not to associate it (especially her medicine) with fear.

  • K8sMom2002

    That is SUPER! It's so hard when little ones have issues and make these associations in their minds.

    While my own DD is now 16 (a whole 'nother kettle of fish!), I know @Katie D has a new baby and a "knee baby" as my grandmother used to call them at that age … when she shares things, it takes me back to those hard days when I was trying to do just what you're trying to do.

  • Luftpause

    Love all these post…. For a high school/college student with chronic asthma and allergies it is so important to have a treatment plan when a severe attach comes on.  Kids nowadays think they are indestructible, especially  ones that have been sick since toddler years.  They forget how fast an attack can come on.  I would recommend  that parent/child/doctor  sit down and go over treatments of worse case that the student can do by him or herself.  I don't k ow about the rest of you parents but I mostly was there when an asthma attack happened.

  • Shea

    It IS scary thinking of not being there physically for an attack–my little one is only 6 and Im always with him, we virtual-school. But, to help alleviate that thought, I am just going to remind myself I  can prepare him to the point he hears my voice in his head, I can start handing him the ropes as he gets more independence, so that HE is the one to check the allergy websites online, hand the chefs card to staff, tell his friends he pacjs his own food to oarties bc of his food allergies, and doesnt go to homes with cats and dogs inside bc of severe dander allergies but would be happy to meet out.  He can be the one to grab his allergy bag for outings. I can be a guide by phone, if an allergy issue arises when I am not physically there. The quickness and severity of allergies and asthma IS scary, but preparations make it a lot better.

  • K8sMom2002

    @Luftpause, you're so right about having an asthma action plan handy. I'm thinking that maybe even taking the filled out  for their wallet and reducing it on the copy machine and then have it laminated might be a good idea.

    And Shea, cell phones have been a boon for me … DD can text me a pix of a label or  a menu for a quick double check. It also makes it easier when she needs to talk with a restaurant or food services person — she can email them a photo of her chef's card.

  • Jen

    @Luftpause Welcome to AAFA.  Good point about reviewing treatment plans with our kids.

  • CAPuttPutt

    @K8sMom2002

    Sorry for my belated reply to our fibro chat….we had a death in the family. We ventured to GA and just returned home today.

    I tried modifying my diet (which is already pretty strict due to food allergies) and lifestyle to manage my pain without medication, but after about 2-3 months my doctor and I decided it wasn't generating the results needed to live life, successfully. I have found a direct correlation, however, to how I am feeling with how much restful sleep I am able to get. For example, if I am up at night with our son sleeping on the couch doing treatments every 4 hours round the clock, my pain gradually gets worse. And if it persists long enough (the lack of restful sleep) it'll trigger my twitchy muscles and migraines. (Btw, only one other fibro person in my life has ever known what I was referencing when I talk about my twitchy muscles so if it seems odd to you, that's why. lol)

    Today, one of my biggest struggles is finding a way to manage my stress levels. Work problems, a small disagreement, or worrying too much generally will trigger a headache which will quickly grow into a migraine if I'm not careful.

    I'm glad you are able to manage without daily medicines. I am not a pharmaceutical fan in general so I love it when I hear of someone being able to treat an ailment/illness without big pharma

  • Jen

    @CAPuttPutt Sorry to hear about the death in your family. Hugs~

    As for getting enough rest, it makes a big difference for me for so many things – energy level, achiness, etc.

  • K8sMom2002

    @CAPuttPutt, hugs on the death in your family. That's never easy.

    And yes, stress DOES have a way of triggering a lot of things … sleep problems, for one, and my asthma for another. Sometimes sleep issues can morph into a whole vicious cycle — get stressed, can't sleep, wake up achy and tired, get more stressed, have twitchy lungs and get still more stressed and get even less sleep that night. 

    One thing that has helped my sleep is to use audiobooks or podcasts at night. I use my earbuds and set my sleep timer on my phone for 15 minutes. Listening to a book that really interests me keeps the "language" part of my brain distracted and I will drift off. I tried relaxing music, but my thoughts would just race. 

    I've used that same technique when I was doing routine chores around the house that keep my hands busy but leave my brain free to worry. If I'm listening to a good book, it really distracts me. Plus it gives me some "self-care" time that helps me take care of yours truly. 

    I think self-care and de-stressing strategies are definitely things we need to teach our kiddos. For some of us, it's not something that comes naturally.