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  • newly diagnosed asthma

    I posted an update in "food allergy?" on Rachel's facial rash, but didn't include the latest development: After a year of trying to convince doctors that I didn't think her wheezing was normal, she's been diagnosed with asthma. The cause of both the rash and asthma is environmental allergies (dust, tree pollen), and the asthma is also brought on by exercise, which stinks because of course toddlers are go, go, go!

    So, today, I spent the morning in the clinic trying to figure out the nebulizer. Rachel cried and ran away, and here I was trying to chase after her while holding out the nebulizer mask. It was probably a funny site, although not necessarily funny to me at the time. My mom and I finally got her to take a nebulizer treatment, with limited time running away and no crying(!), by having her give the treatment to her doll. But I think I got just as much of the medicine as she did!

    She needs a treatment every night before going to bed, and then every four hours during the day as needed (definitely before she goes out to play, and if she starts wheezing). So, I guess it'll become a pretty big part of our life.

    I guess my question is, does anyone else have a child with asthma? I tried looking for a support site on the Web and haven't come up with much luck yet. I'd like to have a couple people just to help answer questions when they come up, and for general support.

  • #2
    Hi Rita!
    Pam Stone sent me the link to your thread. I am sorry fr what you are going through. How old is Rachel? My son Xander now 4 was diagnosed at 2. He hated the neb. Would completely flip out whe he saw the mask I felt awful as his mother forcing it on him. To try somethingdifferent we were given the spacer. A tube where an inhaler attaches to one end and a mask to the other. The mask gos on the face and you press the inhaler for a dose. It took a bit of getting used to but he loves it. We still have a neb, but have stuck with the spacer since he will use it without flipping out into hysterics.
    Jamie

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    • #3
      Yes, my 4.5 year old has asthma. She had RSV at three months and the docs warned me she'd likely be asthmatic as a result. She wasn't officially diagnosed until three but we spent many a night in the ER on oxygen and getting neb treatments.

      For her, since she's had nebulizer treatments since infancy, we didn't have any problem. What I've had friends do is make a craft project out of the nebulizer mask. Get some fun paints (non-toxic of course hehe) and anything else to jazz it up then have your daughter personalize her neb mask.

      We also have a second neb mask that my daughter can use with her stuffed toy (it doesn't have the cord just the mask) and that helps her stay comfortable with it.

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      • #4
        Rita
        I have no experience here but just wanted to send you a hug..

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        • #5
          background & questions

          Thank you for your thoughts and support!

          Rachel was born 10 weeks early and, among her many medical issues those first couple months, had respiratory distress syndrome, severe apnea (20+ episodes/hr), and GERD -- all of which, the pulmonologist, said put her at first to develop asthma later on. At about 9 months old (6 1/2 months adjusted for prematurity), she developed eczema on her face and began wheezing when she was active/playing. I went to several doctors asking them to check her for asthma (we had moved across the state and so were a day's drive from her pulmonologist and couldn't make it back to see him), and all of these new doctors said that babies under 2 years old couldn't get asthma. Yeah, right. I knew for just about a year now that she had it, I just needed to find a doctor who was willing to consider it.

          Well, I finally found the doctor. Rachel is 22 months (will be 2 in June) and has been very sick the past several months. Lots of severe, long-lasting respiratory infections and then just daily wheezing and asthma attacks when she plays outside. I know some moms in my shoes would be devastated to know their child has a chronic illness, but I'm very relieved to finally get treatment for her!

          The neb treatments are going better. I got an activity book that I let her play with only during the treatments, so it's "special time." I think she's beginning to connect the reason for the neb to her not feeling very well. Today, she kept pointing at the neb, over and over, so I decided to listen to her chest and she was wheezing.

          She's so full of energy after the treatments! At first, I thought the medicine was making her hyperactive, but now, I think this is the energy level she's supposed to have. She's very happy, and she's sleeping through her naptimes and at night without waking up constantly. It's been too rainy to go outside, but that will be the next test. Does the neb do the trick for those nasty asthma attacks she has when she's running around outside?

          I have started a chart to keep track of her symptoms and whether the treatment works. I've found that I'm still needing to treat her when she's not running around. The doctor had thought her asthma was exercise-induced, but I think she may just have trouble all the time. I don't know if any of it is due to allergies in the house; it seems impossibly daunting to try to narrow something down in here. What is your advice in trying to do this? We have a cat, some birds, and of course, the usual dust. We also open the windows to cool down the house. I only do this in the evening, as I've heard that pollen counts are higher in the morning.

          She is on an anti-histamine for suspected environmental allergies, although no tests have been done. She had a bad case of eczema on her face that has gone away since we started this medicine.

          Other questions:
          * I have a 6-month-old baby. I try to keep her away from Rachel and I during the neb treatments, but if the baby breathes in some of the medicine, will it hurt her?
          * How do you travel with a child with asthma, since the neb has to be plugged in to work? I'd like to go to a trackmeet in a couple days, and take the kids. Should I ask the doctor for a different form of the medicine that doesn't have to be taken with the neb?
          * Our doctor said Rachel might outgrow the asthma by the time she hits 5 years old, but all the materials I'm reading say that moderate to severe asthma can't be outgrown, especially if the child is diagnosed before 3 years old. What's your idea on this?
          * How do you go about trying to figure out if the asthma is due to allergy? Does she need tests, or is there a way to narrow down the options?

          That's all for now...

          Comment


          • #6
            Originally posted by rita View Post
            Thank you for your thoughts and support!

            Rachel was born 10 weeks early and, among her many medical issues those first couple months, had respiratory distress syndrome, severe apnea (20+ episodes/hr), and GERD -- all of which, the pulmonologist, said put her at first to develop asthma later on. At about 9 months old (6 1/2 months adjusted for prematurity), she developed eczema on her face and began wheezing when she was active/playing. I went to several doctors asking them to check her for asthma (we had moved across the state and so were a day's drive from her pulmonologist and couldn't make it back to see him), and all of these new doctors said that babies under 2 years old couldn't get asthma. Yeah, right. I knew for just about a year now that she had it, I just needed to find a doctor who was willing to consider it.

            Well, I finally found the doctor. Rachel is 22 months (will be 2 in June) and has been very sick the past several months. Lots of severe, long-lasting respiratory infections and then just daily wheezing and asthma attacks when she plays outside. I know some moms in my shoes would be devastated to know their child has a chronic illness, but I'm very relieved to finally get treatment for her!
            I know the relief that you feel as a parent when you finally have confirmation of something you've known and treatment can begin. I'm really glad that you finally have a doctor who was willing to listen!


            The neb treatments are going better. I got an activity book that I let her play with only during the treatments, so it's "special time." I think she's beginning to connect the reason for the neb to her not feeling very well. Today, she kept pointing at the neb, over and over, so I decided to listen to her chest and she was wheezing.
            SMART girl - that is awesome. Now that she's equated the nebulizer with feeling better, it is likely that things will go even easier. I know that it must warm your heart knowing that even at her young age, she is able to notice the difference.

            She's so full of energy after the treatments! At first, I thought the medicine was making her hyperactive, but now, I think this is the energy level she's supposed to have. She's very happy, and she's sleeping through her naptimes and at night without waking up constantly. It's been too rainy to go outside, but that will be the next test. Does the neb do the trick for those nasty asthma attacks she has when she's running around outside?
            What is she taking in the nebulizer? Pulmicort is a steroid so it may add to the energy. We do Pulmicort 1-2x/day (depending on her respiratory status) and then Albuterol PRN (as needed). The albuterol is what we would use with the nasty attacks. It is basically our last line of defense before going to the ER. However, since we added a daily controller medicine in October, we haven't had to use Albuterol once. For some the Singulair is a wonder drug and for others, not so much. Singulair has recently been linked to depression/suicide but my daughter is only four.

            I have started a chart to keep track of her symptoms and whether the treatment works. I've found that I'm still needing to treat her when she's not running around. The doctor had thought her asthma was exercise-induced, but I think she may just have trouble all the time. I don't know if any of it is due to allergies in the house; it seems impossibly daunting to try to narrow something down in here. What is your advice in trying to do this? We have a cat, some birds, and of course, the usual dust. We also open the windows to cool down the house. I only do this in the evening, as I've heard that pollen counts are higher in the morning.
            Keeping a chart is smart, we do the same thing. Plus we have an "Asthma Action Plan" which tells us what to do based on certain symptoms. When Ava was hospitalized at the end of October for a common childhood respiratory virus (adenovirus) that sent her fever to 107, the respiratory technician was surprised to hear that a pediatrician had already enacted one for us. He said usually peds don't and then once a child ends up with a hospital stay one is enacted. I know that she's just started the meds so it may take a bit of time to get it under control ("in the green") but you may talk to your doctor about one. I know that our health insurance company also sent us a form to take to the doctor (since she's flagged as asthmatic in their system evidently).

            She is on an anti-histamine for suspected environmental allergies, although no tests have been done. She had a bad case of eczema on her face that has gone away since we started this medicine.
            Great news, Ava only gets eczema from time-to-time but that is a result of an egg allergy.

            Other questions:
            * I have a 6-month-old baby. I try to keep her away from Rachel and I during the neb treatments, but if the baby breathes in some of the medicine, will it hurt her?
            - I would say it wouldn't do anything in small quantities from time-to-time but I know that albuterol is bad for eyes and pulmicort is a steroid

            * How do you travel with a child with asthma, since the neb has to be plugged in to work? I'd like to go to a trackmeet in a couple days, and take the kids. Should I ask the doctor for a different form of the medicine that doesn't have to be taken with the neb?
            We went camping at the beginning of October (two weeks before our hospitalization hmmm...) and my sister and husband have this little gadget that plugs in to the lighter in your car and then you can plug the nebulizer into it. So we'd hang out in the truck giving Ava her breathing treatment while everyone else went about their business. I googled it, it is a power inverter - here's an example: http://www.provantage.com/tripp-pv375~7TRPI014.htm

            * Our doctor said Rachel might outgrow the asthma by the time she hits 5 years old, but all the materials I'm reading say that moderate to severe asthma can't be outgrown, especially if the child is diagnosed before 3 years old. What's your idea on this?
            Ava has moderate asthma. She isn't at the stage where she needs an emergency inhaler. She's 4.5 and we haven't been to the ER since October but that is because of the Singulair. I'm hoping she outgrows it although now that it is allergy season we've had to add the pulmicort in. She went from November to April with maybe 5 - 6 nebulizer treatments though.

            * How do you go about trying to figure out if the asthma is due to allergy? Does she need tests, or is there a way to narrow down the options?

            That's all for now...
            We didn't do any tests, just kind of watched what happened. Any time she gets a respiratory illness, her asthma worsens. Same with allergies. Lately even with exercise she's starting to cough more so we know we need to alter her medicine. Sorry I'm not of more help on this one.

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            • #7
              Thank you for your comments!

              She's on albuterol. The last couple days we've only had to do the preventative treatments before going outside and to bed, so that's been nice. If we go back to multiple treatments a day, I'll have to ask about that Singulair.

              I like that plug-in thing for the car.

              I don't think I want to get her tested for allergies, if I can help it. A friend of mine said the doctor injects something like 20 allergens into your back and that's just not something that sounds fun to do with a 2 year old.

              I hadn't heard of the Action Plan before, so thanks for that information.

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              • #8
                Yeah the skin test is not the easiest procedure for a young one. My daughter's food allergies were just diagnosed via a blood test (RAST I believe) - while that wasn't the funnest procedure either, it was easier than the skin test.

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                • #9
                  I just wanted to pop on and say that albuterol can definitely make one feel "wired". I've needed it from time to time for some mild allergy-related asthma diagnosed as an adult, and as soon as I take it my heart starts racing and my hands begin shaking. The best way I can describe it is the way my heart races when I drink too much caffeine. It's a "normal" side effect, and it lasts about 10 minutes for me. I find it to be a very uncomfortable feeling, but I can see how for a child it would make them hyper. Also, the sudden rush of oxygen to the brain (from suddenly being able to breath) is a bit of a stimulant in and of itself.

                  I don't have much to offer in terms of asthma in a child, but just thought my experience might help you to understand what she's feeling.

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                  • #10
                    Originally posted by rita View Post
                    * Our doctor said Rachel might outgrow the asthma by the time she hits 5 years old, but all the materials I'm reading say that moderate to severe asthma can't be outgrown, especially if the child is diagnosed before 3 years old. What's your idea on this?
                    I have not done any research on the subject, but wanted to add my personal experience. I was diagnosed with asthma as an infant and started having severe attacks requiring hospitalization when I was 11 or 12. We were living overseas at the time and the attacks were severe enough that they were going to send us back to the States where there was better medical care. I haven't had an attack since I was pregnant with DD2 and haven't used an inhaler in, at least, 3 1/2 years. That leads me to believe one CAN outgrow asthma.

                    Albuterol made me bounce off the walls. My main complaint as a child was how I was always shaking due to my meds. Even now I avoid medicine for illness as long as I can. I'll be thinking of you as you learn how to control Rachel's asthma.

                    Comment


                    • #11
                      Thank you again for these great comments!! It's really insightful as to how albuterol can affect her.

                      Because she needs a treatment to prevent nocturnal asthma, I've learned to either give it to her a half hour before bedtime or wait until she's asleep. Otherwise, we have a cranky kid on our hands that refuses to go to bed!

                      Also, I've read up on RAST and it definitely seems the better alternative to the skin allergy test, although it seems I would need to have a narrowed-down list of possible allergies for RAST. I think I'll just sit tight for now and see where the meds take us.

                      Today, I forgot to give her a preventative treatment before we went outside to play, but she did great until about an hour later and she was wheezing up a storm! I'm so used to the wheezing that I find it amazing when I can't hear even the slightest noise after the treatment.

                      A friend of mine with asthma said she had a case of "mild, persistant" asthma all through childhood and now has only used her inhaler a couple times the past five or so years. So, I guess you can grow out of it in some cases. Our doctor had said something about Rachel needing to build up her immunity, which I thought sounded odd -- as asthma, allergy atleast, is an immunity over-reaction. Or do I have this wrong?

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                      • #12
                        Hi Rita!
                        Albuterol definitely can cause hyperness. It can be so hard to deal with. You have a child needing her inhaler to breathe, and the medication causes hyperness!

                        The back test is not fun. Xander had it at 3. Most docs won't do it earlier than that. As unpleasant as it is, it is th best way to find out about the allergies to manage the Asthma. Xander actually sees an allergist for his Asthma treatment, this was suggested by his Ped.
                        Jamie

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                        • #13
                          Hello,

                          I am not sure if I can be any help to you, I had untreated asthma from a young age (I would go blue but when I arrived at the hospital, by the time a doctor came in, which was hours later, I of course was fine). So I am not experienced with different ways to do the neb. but I did have to take puffs when in elementry school. I can understand fully on the shakes and hyperness that comes with the meds. It's as annoy to us as much as the parents. It's like you have the restless, gotta-go, gotta-go feeling, like you don't know what to do with yourself.

                          My comment was more about the allergy test... UMmmm, ya, hurts, really hurts, I had mine done when I was 4, and ya, I still remember it. I am supposed to have the test every second year, but I have not had one since. It took my father, the two receptionists and the doctor to hold me down. The best part however was the numbering (tickled). I ended up being allergic to everything, and wanted to jump out of my skin with the rashes came.

                          Anyway, I am not sure if they do it in your area, but there are needles they do now for young children in the top shoulder area. Don't quote me but I think it's 4 or 5 needles. Maybe you can talk to your doctor about it? Was this what the other lady was talking about?

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                          • #14
                            Hmm...I'm thinking we'll hold off on that skin test for now. Her doctor said it's likely Rachel's asthma isn't even due to allergies. But she does have at least one allergy. Today, I forgot to give the antihistmine right away and she had a full-body rash in just a few hours. I reviewed what she ate/came in contact with, and I think it's milk.

                            Do you think I should take dairy all the way out of her diet and try soy milk, or how do I manage this and make sure she's still getting calcium/Vitamin D?

                            So, we went to the dr today and she's now on Singulair. We were giving her 2-5 treatments a day, including 2 for prevention before bedtime and naptime. The antihistamine is getting unpleasant to give -- she's taken to spitting it out. It's supposed to be fruit-flavored, but it must taste awful because she usually takes meds real well.

                            Anyone have advice on giving meds?

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                            • #15
                              Originally posted by rita View Post
                              Hmm...I'm thinking we'll hold off on that skin test for now. Her doctor said it's likely Rachel's asthma isn't even due to allergies. But she does have at least one allergy. Today, I forgot to give the antihistmine right away and she had a full-body rash in just a few hours. I reviewed what she ate/came in contact with, and I think it's milk.

                              Do you think I should take dairy all the way out of her diet and try soy milk, or how do I manage this and make sure she's still getting calcium/Vitamin D?

                              So, we went to the dr today and she's now on Singulair. We were giving her 2-5 treatments a day, including 2 for prevention before bedtime and naptime. The antihistamine is getting unpleasant to give -- she's taken to spitting it out. It's supposed to be fruit-flavored, but it must taste awful because she usually takes meds real well.

                              Anyone have advice on giving meds?
                              there are MANY ways of getting calcium and vit D into her w/out milk. dark leafy greens are best (put them in smoothies if need be) and vit. D actually comes best via good-old fashioned sunlight. google the two for more ideas. i'd take it easy on soy, too. there are limits to what kids should have both of cow'smilk and soy milk. in fact, dr. sears just wrote about cows milk in the latest LINKS.

                              i'd read up on Singulair, too. there were some nasty reports out about it a few weeks ago. i believe relating to causing severe depression and suicide

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