Sucks to your ass-mar (and your ass-piration?)
February 25, 2015 12:58 PM Subscribe
My 16 month old has had a winter full of back to back respiratory infections of increasing severity. She has an asthma diagnosis but after a recent terrifying episode and prolonged hospitalization, the pulmonologist is really concerned about aspiration. I'm in the process of scheduling a swallow study. Obviously YANMPediatrician, but please tell me about your experiences with children with severe asthma, or chronic respiratory infections, or aspiration. I'm currently scared shitless, so positive stories and reassurance are especially welcome.
As I mentioned, she's been sick all fall - multiple courses of oral steroids, a flu-like illness followed by bacterial pneumonia that she would have been admitted for if the hospital hadn't been full, an ER trip narrowly averted because our doctor was in clinic late that day.
A couple of weeks ago, the kid went from a clean checkup (where clean means cough and some crud in her lungs, but no wheeze) Friday, to an active and happy day Saturday, to a decent nap, to severe respiratory distress 15 minutes after she'd last been checked on. I raced her to the ER, she was admitted to PICU, and then spent the next 10 days trying unsuccessfully to wean off oxygen and high air flow. She was on continuous or hourly nebulizers for nearly five days. I cannot even begin to wrap my head around how suddenly this happened, or the possibility of it happening again.
She went home, was well for three days, and now has another chest cold, and it's all I can do to keep her breathing from being labored. She's on QVAR, albuterol every 4 hours round the clock, and the pulmonologist added Singulair today to help with her upper airway congestion. But the pulmonologist thinks her problems are too bad to just be asthma, and aspiration is the next thing on the list. Baby eats food well, so it's thin liquids we're most worried about. And, I guess, reflux, though we've never noticed any signs of it.
I'm scheduling a swallow study, and I've read a little about what to expect. The speech and language pathologist will call and talk with me before the study.
But I want to hear about people's experiences with these issues. Does any of this sound familiar to you? Did your toddler have a swallow study? Did they cooperate? How was your aspirating kid treated? Did their lungs get better? Are you a professional in any of these areas? How do I sleep at night?
As I mentioned, she's been sick all fall - multiple courses of oral steroids, a flu-like illness followed by bacterial pneumonia that she would have been admitted for if the hospital hadn't been full, an ER trip narrowly averted because our doctor was in clinic late that day.
A couple of weeks ago, the kid went from a clean checkup (where clean means cough and some crud in her lungs, but no wheeze) Friday, to an active and happy day Saturday, to a decent nap, to severe respiratory distress 15 minutes after she'd last been checked on. I raced her to the ER, she was admitted to PICU, and then spent the next 10 days trying unsuccessfully to wean off oxygen and high air flow. She was on continuous or hourly nebulizers for nearly five days. I cannot even begin to wrap my head around how suddenly this happened, or the possibility of it happening again.
She went home, was well for three days, and now has another chest cold, and it's all I can do to keep her breathing from being labored. She's on QVAR, albuterol every 4 hours round the clock, and the pulmonologist added Singulair today to help with her upper airway congestion. But the pulmonologist thinks her problems are too bad to just be asthma, and aspiration is the next thing on the list. Baby eats food well, so it's thin liquids we're most worried about. And, I guess, reflux, though we've never noticed any signs of it.
I'm scheduling a swallow study, and I've read a little about what to expect. The speech and language pathologist will call and talk with me before the study.
But I want to hear about people's experiences with these issues. Does any of this sound familiar to you? Did your toddler have a swallow study? Did they cooperate? How was your aspirating kid treated? Did their lungs get better? Are you a professional in any of these areas? How do I sleep at night?
I was your kid, 30 years ago. It was a lot of work, for my parents and for me. Even on good days, I was on a nebuliser 3 times a day for years, nearly all the way through primary school. This was a drag, and I sulked a bit, but I eventually became used to it.
This sounds bleak, but it isn't. Asthma very often becomes less severe as kids grow older. Mine did. After primary school I was fine with a preventer. Many kids grow out of it entirely. I didn't, but modern asthma drugs are really good. I have good lung function now and can deal with dusty houses and strenuous exercise with no issues.
I will ask my mother how she dealt with toddler aged me.
posted by His thoughts were red thoughts at 1:33 PM on February 25, 2015 [1 favorite]
This sounds bleak, but it isn't. Asthma very often becomes less severe as kids grow older. Mine did. After primary school I was fine with a preventer. Many kids grow out of it entirely. I didn't, but modern asthma drugs are really good. I have good lung function now and can deal with dusty houses and strenuous exercise with no issues.
I will ask my mother how she dealt with toddler aged me.
posted by His thoughts were red thoughts at 1:33 PM on February 25, 2015 [1 favorite]
A friend's child went through a similar toddler/early childhood sequence of major respiratory problems and infections coupled with chronic ear infections. He didn't get all the way to a swallowing study because just prior to that they finally figured out that he had terrible food allergies to eggs, soy, dairy, peanuts, and wheat. Once those foods were strictly eliminated from his diet, the chronic infections and asthma went away and he was no longer an ER frequent flier and the nebulizers and drugs were no longer a daily feature for him. Shockingly, the allergy angle wasn't ever explored by his many doctors until my friend escalated his management to the Peds Department Chief who luckily agreed that this could be an undiagnosed allergy situation. Good luck.
posted by quince at 1:41 PM on February 25, 2015
posted by quince at 1:41 PM on February 25, 2015
I'm a speech therapist working with adult swallow problems. Your speech therapist will have seen this hundreds of times before. It can be so scary to over-google before having a test done so although I understand your fear and wish to be informed, it might be better to wait and talk it over with your SLP. You're doing the study because you don't know what the problem is, so worry about it once you're there. I get so many people referred where my end conclusion is 'nope, no significant problems with that swallow'. Good luck.
posted by kadia_a at 2:11 PM on February 25, 2015 [1 favorite]
posted by kadia_a at 2:11 PM on February 25, 2015 [1 favorite]
Best answer: My baby had aspiration pneumonia and the speed is terrifying - I still get a little shakey remembering her laboured breathing and limp body. She had to be ventilated for a while and then on reflux meds and monitored while eating etc. Memail me if you want to talk. The biggest things I remember that helped:
Switching to the thick milk powder meant for babies with reflux issues. We had to try different nipple sizes because it was so thick, but she had fewer coughing incidents with that brand.
Extended breastfeeding to boost her immune system. She aspirated as an infant on breastmilk so I also had to make her nurse in short bursts and watch her to make sure she wasn't struggling.
Any cold meant constantly clearing her nose - humidifiers and that sucky things for the nose, the elfrieda, to keep her nostrils open.
Antibiotics. With the rest of the kids, we tried not to, but for her, it was antibiotics at the first sign of infection because they so rapidly turned into major issues. Her pediatrician and family doctor okayd this with us.
Tapping her back to loosen mucus when she was sick - the nurses taught me this when she was hospitalized. And it really helped with nasty chest infections. You need someone to show you how to do it.
Getting taught how to do infant CPR and heimlich helped my confidence at home.
We did baby-led weaning with solids and she are almost no puréed - she loved whole apples from the start. Her aspirations were liquid, and she had no motor or sensory issues so the speech therapist okayd that.
The barium swallow test is like 5-10 minutes and surprisingly easy.
The big thing is that they literally outgrow this - the tiny tubes that are getting blocked and causing distress lengthen, their coordination improves - it's hell when they're little but they outgrow it.
posted by viggorlijah at 3:48 PM on February 25, 2015 [2 favorites]
Switching to the thick milk powder meant for babies with reflux issues. We had to try different nipple sizes because it was so thick, but she had fewer coughing incidents with that brand.
Extended breastfeeding to boost her immune system. She aspirated as an infant on breastmilk so I also had to make her nurse in short bursts and watch her to make sure she wasn't struggling.
Any cold meant constantly clearing her nose - humidifiers and that sucky things for the nose, the elfrieda, to keep her nostrils open.
Antibiotics. With the rest of the kids, we tried not to, but for her, it was antibiotics at the first sign of infection because they so rapidly turned into major issues. Her pediatrician and family doctor okayd this with us.
Tapping her back to loosen mucus when she was sick - the nurses taught me this when she was hospitalized. And it really helped with nasty chest infections. You need someone to show you how to do it.
Getting taught how to do infant CPR and heimlich helped my confidence at home.
We did baby-led weaning with solids and she are almost no puréed - she loved whole apples from the start. Her aspirations were liquid, and she had no motor or sensory issues so the speech therapist okayd that.
The barium swallow test is like 5-10 minutes and surprisingly easy.
The big thing is that they literally outgrow this - the tiny tubes that are getting blocked and causing distress lengthen, their coordination improves - it's hell when they're little but they outgrow it.
posted by viggorlijah at 3:48 PM on February 25, 2015 [2 favorites]
My oldest had serious health problems, including pneumonia at age 11 months. He was diagnosed "asthmatic" for a long time, but that diagnosis was changed to something more serious when he was 14 (after my health problem was finally ID'd and that led to his being ID'd).
As an infant, in one apartment, he was sick all the time. I broke the lease based on his serious health issues and we moved, and that helped a whole lot. With getting a proper diagnosis later on and with making appropriate dietary and lifestyle changes, he is now 27 and is more fit than a lot of people without his condition.
He slept with me a lot when he was little. That helped me sleep and it helped him sleep. Babies who have respiratory problems can benefit from sleeping up against an adult because the adult's organs will set the tempo and help them breathe more evenly. He was generally in less distress when he was up against me. I also used baby carriers (had him strapped to me) instead of strollers, etc. I was his furniture when he was little.
Whatever is wrong with your baby, environmental factors can make a big difference. This can be good news in that those are often things you can change. I moved for health reasons on more than one occasion over the years and it always was followed by a reduction in ER visits. I was a military wife and there were several incidents where I found myself renting a place that was making my son's health (and mine) worse. Moving to new/better construction, away from farm fields, etc was consistently very helpful in calming things down.
posted by Michele in California at 3:48 PM on February 25, 2015 [1 favorite]
As an infant, in one apartment, he was sick all the time. I broke the lease based on his serious health issues and we moved, and that helped a whole lot. With getting a proper diagnosis later on and with making appropriate dietary and lifestyle changes, he is now 27 and is more fit than a lot of people without his condition.
He slept with me a lot when he was little. That helped me sleep and it helped him sleep. Babies who have respiratory problems can benefit from sleeping up against an adult because the adult's organs will set the tempo and help them breathe more evenly. He was generally in less distress when he was up against me. I also used baby carriers (had him strapped to me) instead of strollers, etc. I was his furniture when he was little.
Whatever is wrong with your baby, environmental factors can make a big difference. This can be good news in that those are often things you can change. I moved for health reasons on more than one occasion over the years and it always was followed by a reduction in ER visits. I was a military wife and there were several incidents where I found myself renting a place that was making my son's health (and mine) worse. Moving to new/better construction, away from farm fields, etc was consistently very helpful in calming things down.
posted by Michele in California at 3:48 PM on February 25, 2015 [1 favorite]
My daughter has chronic lung disease, GERD and aspiration of thin liquids. She was on oxygen for more than nine months and eventually the GERD and aspiration were so bad that she needed to have a feeding tube placed. BUT. Ours is a super extreme story and this all happened when she was very little (less than a year) and none of it was a surprise because she was born very early with a ton of health problems. And it has all improved over the last two years, and longterm we do not expect her to have ongoing problems.
Swallow studies are really neat to see and when she ate by mouth she was entirely cooperative. I am told the barium doesn't affect the taste of whatever they drink and she didn't seem to notice. Bring a familiar bottle or sippy cup along with familiar milk/formula so that you've got the best chance for her to cooperate. The OTs and speech therapists are very familiar with getting kids to do it and have great toys to encourage them. If she is aspirating, there are several commercial thickeners you can add to liquids. My daughter's aspiration has resolved itself even though she has not drunk hardly anything in two years. It just does get better somehow.
I agree with having your daughter sleep in your room (or you in hers) until this is better. We went through our first respiratory illness a few weeks ago and she was next to one of us at all times until we weren't afraid she would have breathing trouble.
posted by peanut_mcgillicuty at 5:58 PM on February 25, 2015
Swallow studies are really neat to see and when she ate by mouth she was entirely cooperative. I am told the barium doesn't affect the taste of whatever they drink and she didn't seem to notice. Bring a familiar bottle or sippy cup along with familiar milk/formula so that you've got the best chance for her to cooperate. The OTs and speech therapists are very familiar with getting kids to do it and have great toys to encourage them. If she is aspirating, there are several commercial thickeners you can add to liquids. My daughter's aspiration has resolved itself even though she has not drunk hardly anything in two years. It just does get better somehow.
I agree with having your daughter sleep in your room (or you in hers) until this is better. We went through our first respiratory illness a few weeks ago and she was next to one of us at all times until we weren't afraid she would have breathing trouble.
posted by peanut_mcgillicuty at 5:58 PM on February 25, 2015
Best answer: Our son had similar problems. Between 2 months and 2 years old, he had aspiration pnumeonia, at least four courses of oral steroids (the side effects...phew...nightmare tantrums), wheezing or "croup" with most colds, several ear and sinus infections, a miserable week of the flu, and 5+ ER/urgent care visits. He had such a barking cough that random strangers would approach us with concern. We were very lucky, though, to avoid any hospitalizations or major medical interventions. An allergist/ENT finally gave us a diagnosis of GERD with milk allergy and laryngomalacia. After the fact, we really probed our relatives for more medical history, and figured out that he inherited the GERD from my side of the family and the milk allergy from my husband's.
The good news...He got MUCH better once we got him on the right PPI (Prevacid...the first line drug, Zantac, did nothing for him) and an extensively hydrolyzed formula (Alimentum), as I could never quite get rid of the hidden milk products in my diet. We also did all the self-care suggested above, such as humidifiers, the NoseFrida, and leaving as much time between meals and lying down as possible. He is now almost 4 years old and has outgrown his worst symptoms. We only had to do about 2-3 days of nebulizer treatments this winter, were able to cut back on his Prevacid dose, and can give him milk again (but not before bedtime).
The bad news...we were both a mess for a few years! I ended up with pretty bad postpartum anxiety, due to exactly the kind of "is he breathing?" stress you describe. Scared shitless is an apt term!!! It's a really awful feeling, and people seem to minimize it with "oh, all new mothers are paranoid." Well, maybe, but not all of them have such a compelling reason! Please do take care of yourself too.
posted by Cecilia Rose at 6:59 PM on February 25, 2015
The good news...He got MUCH better once we got him on the right PPI (Prevacid...the first line drug, Zantac, did nothing for him) and an extensively hydrolyzed formula (Alimentum), as I could never quite get rid of the hidden milk products in my diet. We also did all the self-care suggested above, such as humidifiers, the NoseFrida, and leaving as much time between meals and lying down as possible. He is now almost 4 years old and has outgrown his worst symptoms. We only had to do about 2-3 days of nebulizer treatments this winter, were able to cut back on his Prevacid dose, and can give him milk again (but not before bedtime).
The bad news...we were both a mess for a few years! I ended up with pretty bad postpartum anxiety, due to exactly the kind of "is he breathing?" stress you describe. Scared shitless is an apt term!!! It's a really awful feeling, and people seem to minimize it with "oh, all new mothers are paranoid." Well, maybe, but not all of them have such a compelling reason! Please do take care of yourself too.
posted by Cecilia Rose at 6:59 PM on February 25, 2015
I had severe asthma that requires d hospital stays when I was a teenager. I didn't get better until I stopped living with pets in my 20s. I had no idea this was causing the severe asthma because the pets didn't need be around all the time, like if I traveled away from home. It took several months of pet abstinence, which occurred after last pat passed away. I've been asthma free every since (20 some years), an avid runner even. I occasionally come into contact with animals and am fine, but if for more than a week the asthma kicks in. So, exploring allergies may help a lot, animals, food, mold, etc. For some reason a lot of Drs don't persue this. There are blood tests that can detect hundreds of allergen antibodies.
posted by waving at 2:36 AM on February 26, 2015
posted by waving at 2:36 AM on February 26, 2015
The swallow study was dead easy, no big thing at all. It was kind of neat to watch the swallow actually.
My kid had slightly different issues, but was sick 26 times in 28 months. It was exhausting and stressful and heartbreaking. Then we switched pediatricians- best thing ever. The new Ped checked his titers only to find that he presented as a child who had never been vaccinated. We re-vaccinated him (starting with Prevnar) and it ha been miraculous. So, maybe check titers for pneumococcal immunity to cut down on the respiratory infections.
posted by PorcineWithMe at 3:09 AM on February 26, 2015
My kid had slightly different issues, but was sick 26 times in 28 months. It was exhausting and stressful and heartbreaking. Then we switched pediatricians- best thing ever. The new Ped checked his titers only to find that he presented as a child who had never been vaccinated. We re-vaccinated him (starting with Prevnar) and it ha been miraculous. So, maybe check titers for pneumococcal immunity to cut down on the respiratory infections.
posted by PorcineWithMe at 3:09 AM on February 26, 2015
Response by poster: Just came back to howl into the void that Nanopanda didn't even make it to the scheduled swallow study before landing back in the PICU. It'll be done before she leaves the hospital, as will the limited immune panels that can be done when you're on a metric shit-ton of steroids, so hopefully we'll have some answers soon.
But goddammit. Just, goddammit.
posted by telepanda at 9:19 AM on March 3, 2015 [1 favorite]
But goddammit. Just, goddammit.
posted by telepanda at 9:19 AM on March 3, 2015 [1 favorite]
This thread is closed to new comments.
If it were me, I would have my toddler in my room sleeping next to my bed. That way you will not miss any worsening respiratory issues. This would probably mean some crappy sleep for you, but then again, under the circumstances I doubt you are sleeping well anyway. Best of luck and I hope micro/nanopanda gets well and stays well soon! Let's hope in time this is all just a minor footnote in her health history.
posted by treehorn+bunny at 1:07 PM on February 25, 2015 [3 favorites]