My greatest wish is for my kids to be free. Every parent’s wish, right?! Free from judgment, free from restraint, free to be themselves…but the truth is, the world is cruel sometimes and none of us are ever truly ‘free’…Add to this extenuating circumstances…in the case of my own children, that’s food allergies and asthma. That equals judgment, restraint and lack of freedom to fully be themselves, but we do the best we can to facilitate them and help them thrive.
But we broke free a little bit…when we completely stopped Lark’s asthma meds (and other meds for both kids) back in March.
It’s been a long journey. Lark has been on some form of prescription medication since she was 6 months old. It’s terrifying, daunting, expensive, frustrating, annoying…and also life-saving at times. Every time we change meds or add a new one, I have panic attacks thinking about what it might do to my petite toddler’s body. She’s had more steroids that any child should have, like, dangerous amounts to the point where doctors are even hesitant to prescribe them anymore. She’s also had more x-rays in her 3 years than any child (or adult) should have and been exposed to radiation in excess to the point that no one can be sure how it may affect her…but she lives and is healthy and growing, so the benefits (so far) have outweighed the risk.
We’ve tried several allergy medications on her (and Arlo) and they’ve helped at times, but also given zero relief at times. For months, years even, Lark has had multiple inhaled steroids daily, just to keep asthma attacks at bay…and also daily allergy meds just to keep her system calmed down, although it’s never calm. Arlo isn’t even two, and although he’s not showing obvious signs of asthma yet, he has pretty bad seasonal allergies and now gets coughing fits when he’s too physical and their allergist has suggested a new med for him, after the last one wasn’t working…sigh…my mama heart breaks for them daily.
Back in March, Lark went through 4 antibiotics in a month span…FOUR!!! And also a topical anti-fungal at the same time because the antibiotics caused so much damage to her that she developed a separate infection. We saw the allergist because she began having random rashes and outbreaks of vomiting…we’d had enough…and so had her body. We got the antibiotic situation squared away and healed from the infections that started that nightmare, but in the process, we decided to cut her asthma meds back…to none. ..that’s right, we stopped her asthma medication completely.
The allergist had already taken her off two of her allergy meds, again, since they, again, didn’t seem to be working and her asthma hadn’t flared up since fall so we just sort of “let it ride.” And you know what?! She’s been doing pretty well! It has also been nice not having to be tied to her nebulizer machine, which had become a regular piece of our home decor since it was first prescribed to her at 6 months old. She is currently on one medication, aside from supplements. We decided to try her on a nasal spray because as her pediatrician and allergist put it, “her sinuses are a mess.” And it does seem to help, though I still don’t like it, but this is a massive improvement from even just six months ago when she was on up to 5 at any given time. She’s had moments here and there, but nothing crazy! This has been a massive positive note in our life. We haven’t been tied to a machine or worried she would go into dangerous breathing distress in weeks! It was a much welcomed taste of freedom that we desperately needed!
SO maybe you’re like, “what is asthma?” well…asthma is this:
A respiratory condition marked by spasms in the bronchi of the lungs, causing difficulty in breathing. It usually results from an allergic reaction or other forms of hypersensitivity.
SO lark will get very labored breathing, wheezy (a sort of whistle when she breathes) and retractions in areas of the body where you can see breathing with the naked eye. Basically her skin, etc between her ribs and around them will move in and out very quickly and is a sign of labored breathing. Her oxygen levels and heart rate can also drop to dangerous levels.
Lark’s medications were/are as follows:
Pulmicort (Budesonide) – Twice daily via Nebulizer, regardless of health status, as a ‘maintenance’ medication. It is a steroid that controls inflammation within the lungs and is considered safer because it doesn’t affect other parts of the body, only the lungs. The first time she took this, it sent her to the hospital in an ambulance because we weren’t quite instructed properly how to use it for her age range, it was also a suspected case of anaphylactic shock from an unknown source, so it was a confusing reaction. (it’s a machine that administers a vapor of meds that she breathes in. We’ve tried traditional inhalers, but for her, they didn’t work well. We typically also have to travel with the machine and all of its parts…sigh). I use a daily inhaler like this as well called Symbicort.
Albuterol – This is what is called a ‘rescue’ medication. If she starts to have breathing distress, even while using the above meds regularly, we give breathing treatments of albuterol at 4 hours intervals, also via nebulizer. It stops what are called ‘bronchospasms’ in the lungs. It opens the airways and relaxes the muscles. Sometimes her breathing is so bad, albuterol either doesn’t help at all, or has to be given as much as every two hours, but usually we are admitted to the hospital if things go that route. I carry an albuterol rescue inhaler for myself as well.
Singulair – this is an oral chewable and is a leukotriene inhibitor. Leukotrienes are chemicals the body releases when you breathe in an allergen (such as pollen). … Singulair is used to prevent asthma attacks and to relieve runny nose and sneezing caused by allergies. She’s taken this on multiple occasions, but has also been taken off of it on multiple occasions because it didn’t seem to make a difference. I took this for awhile as well, but saw no improvement in my symptoms either. They’ve now suggested it for Arlo, but we’ve yet to start him on it.
Zyrtec – Zyrtec (cetirizine) is an antihistamine that reduces the effects of natural chemical histamine in the body. Histamine can produce symptoms of sneezing, itching, watery eyes, and runny nose. Zyrtec is also used to treat itching and swelling caused by chronic urticaria (hives). This also wasn’t making a large impact on Lark, and she was taken off of it, for the second time, in March. Arlo was also on it, but it doesn’t seem to help him much either…I take this daily as well.
Prednisolone – Basically prednisone, or an oral steroid. They’re very dangerous, but also very life-saving for a variety of conditions. For Lark (and for myself) they basically calm down inflammation in the entire body. But because they treat you systemically, they can be very dangerous. You are more susceptible to other disease because your immune system is, in a sense, turned off. They can cause damage to your bones, muscles and other parts of the body if used for prolonged periods of time. When all else fails, steroids are given. They can have lasting effects on child’s growth as well. The inhaled steroids can also, but the prevalence is less. These are a last straw effort to treat asthma and often become a ‘risk vs. benefit’ decision because Lark has had too many and doctors are hesitant now to prescribe them to her. But we have a supply at home on hand in the event of emergencies, as advised by her allergist.
We also carry an Epi-Pen (epinephrine) and Benadryl with us wherever we go in case of other reactions to food or otherwise.
Lark is an absolute fighter…there’s not doubt about that. I’ve seen her at her absolute worst, poked and prodded for countless tests, strapped into strange contraptions as an infant to have her lungs x-rayed, I’ve seen her oxygen and heart rates drop, I’ve seen them give her medicine with an intubation kit at her side should she stop breathing…asthma is no joke and I just hope she can be free one day. Asthma is a life long disease. It’s unpredictable, it can come and go… I struggle with mine daily too, but my hope for her is that someday she can resume life without constant medication or medical intervention. She is a warrior and she fights every day. She has been doing well for the last month and I can only hope that we are on the upswing in all of this.
She’s our super girl.
Edited to add: I wrote this blog post last week, and it’s one I’ve been excited to write because it felt so much like a win and a step in the right direction. But…as stated above….it’s unpredictable and in the last 48 hours, she has been struggling and we reverted back a bit using her inhaled medicines to bring her back from what only turned out to be a mild attack. But it was a quick reminder at how fast these things can take a turn and that although we’re making big strides, it’s still a journey we will continue to lead her through. It saddens me, but we will get through this…
May is Asthma & Allergy Awareness month. Visit the Asthma & Allergy Foundation of America for more information, resources and education at www.aafa.org.