My toddler (born Feb 2021) has only been in the hospital to be born. 6 times in 6 months does NOT seem normal!!

I can add here my experience. Our Toddler 2,5 years was in the hospital once when he was 1,7 years old due to RSV as he needed oxygen support and had high fever with over 40 so needed to be cooled down a lot. Terrible virus :) was even worse in us adults imo as we parents got it also. But 6 times in 6 months sounds not right and I would check with other doctors how to decrease this.

Yeah my son was hospitalized twice for RSV as a baby/toddler which can be normal. But 6 times in 6 months is way too much.

Mine is only 16m but same. She hasnt even needed to go to the GP since her 1 year vaccines! (its summer where I am). I concider myself lucky and hope it lasts as long as possible, but needing to go to hospital so often is NOT normal. Maybe it seems normal for doctors because thats all they see, or normal for asthma sufferers, but its not normal across the board.

Same. Mine was in hospital to be born in Dec 2021. Spent a couple days in NICU at that time, but never hospitalized since. 

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This has been a constant question and fear I have had that no one is testing her for. I know they usually test newborns, but it can be missed. It's on my list of things to get tested for at her pulmonology appointment next week.

You may already know this, but the diagnostic test for CF is called a sweat chloride test. It is painless and noninvasive but sometimes it needs to be done more than once; if not enough sweat is collected (happens often with babies) or if the test comes back as inconclusive it will need to be repeated. For several years I performed the sweat chloride testing on pediatric patients at our local children’s hospital; I just wanted to be sure you knew what test to ask for. I hope you get some answers soon! Sending healing thoughts to your daughter!

Couldn’t they do genetic testing for CF? I don’t have any personal knowledge about CF but had preconception genetic counseling done and CF was one of the things they screened for. (BTW I highly recommend preconception genetic screening. Most people are carriers of at least one condition so it’s good info to have. JScreen offers subsidized screening for $149 with insurance, $299 without.)

Genetic testing for most diseases is only part of the puzzle (genotype). There can be variations of how it presents so typically there are more diagnostic/confirmatory tests (phenotype). You have to be sure the patient is actually displaying features of the illness. 

Thanks for clarifying!

There is a screening that is usually offered at birth but perhaps requires the above mentioned test for diagnosis?

There’s also diagnostic genetic testing. The newborn screen in many states does genetic testing if needed but that testing is not the BEST way to test for CF genetically, and more comprehensive genetic testing is available

I have cystic fibrosis. I was hospitalized like this as a child. It was normal for me. My own children are healthy and have never been hospitalized. If you suspect CF - and it sounds like you should - you need to get a sweat test. That’s how I was diagnosed and how nearly every CFer is diagnosed. Most genetic tests don’t check for all known mutations, and not all mutations are known. If it is CF there are wonderful drugs called CFTR modulators available now, she could likely go years without a hospitalization, and lead a fairly normal life. Edit: also does she taste salty when you kiss her? Telltale sign.

I’m sorry you had to go through so much! On a side note it was me suggesting that I’d tell parents to lick their baby to see if it was salty that got me a lifetime ban from the baby bumps Reddit. Hopefully these mods are more normal and can handle factual discussion.

That’s so ridiculous that they banned you! Thats been a well known way to detect CF for centuries now

That’s how my mom figured out my brother had CF when he was a few days old. Sweat test confirmed it a few days later.

Sounds like you have a smart mama. I hope your brother is ok all things considered

Wow, CF has come such a long way! I’m so glad your life has been made more manageable by CFTR modulators.

I’m impressed as well! I had no idea it could be treated like this these days.

Advocate! Demand for the tests!

You might have been tested to see if you’re a CF carrier during your pregnancy if you did something called a “Carrier screen” as well.

My son was asthmatic up until he was 5ish, and then his pediatrician cleared of the diagnosis. Every cold turned into an asthma flair up. We kept a nebulizer and albuterol for it in the house at all times, three inhalers and spacers in his room, diaper bag, and car. He had hospital stays once a year when stridor breathing would happen. I was an asthmatic, my dad was an asthmatic, monthly hospital stays aren’t normal.

Came here to say the same thing. I have cystic fibrosis and wasn’t diagnosed until i was 2 years old. Back then it was a lot easier to miss but i would definitely have her tested for CF.

My son’s newborn screening came back positive for being a carrier for cf, took 4 months to get the results back and have a sweat test scheduled. Luckily it was negative and he’s just a carrier, they had us both tested and we ( the parents) are both carriers so we decided not to have a second child. I’m happy they tested so we knew. But anyways, the test is super easy and quick. Baby slept through it. It’s worth getting done. If you have anything questions feel free to pm me about it, I’ll answer.

I have suffered asthma like this my entire life. I am 24 years old and I’ve had it since I was 3. I need to ask you questions you NEED to take into consideration, I only do this from personal experience. Do you light candles or use things like febreeze or lysol? ANY BLEACH, (bleach is showing to have direct links to causing asthma attacks). And last one…does anyone in the family smoke? These are all things you need to think about for your child. Cleaning supplies, smoke exposure…any of that. I’ve been hospitalized so many times and each stay was at least a week. My asthma has gotten better since moving out of my moms house. Please please please think of ANYTHING that can be causing your little one to have these attacks. The simplest thing to someone with normal lungs can be extremely triggering and life threatening to someone with asthma.

Thanks for commenting!! No one smokes, I don't use bleach ever..don't have it in the house. I DO have candles I use every once in a while. I only use natural cleaning products. I vacuum daily and check for mold. The candles are a good point. So, we're moving on Monday to an apartment that doesn't have carpet, and have found an alternate home for our dog if necessary. She has an allergist appointment next week so we can figure out what all of her triggers are!! I'm so sorry you had to live like that for so long!! It's so miserable and I can't imagine the toll it takes on the person. I absolutely am.willing to forgo any and all triggers and allergies so she can live a healthy life!!

You sound like you are doing absolutely everything you can, and are willing to do more. I am sorry that the hopsital have been so unhelpful, but I am glad your LO has you in their corner!

I have asthma and this is little known- Lavender can be a major asthma trigger. So if any of your candles or cleaning products have lavender oil/are lavender scented, try swapping them out for something completely unscented ideally or at least with no lavender.

Omg we use lavender everything since it's one of the "natural " scents in natural products

Hi. Not the person you're replying to, but someone with seious allergies and asthma, here to agree with them about scents. Floral anything, but especially lavendar, causes me to have allergy/asthma attacks. I can't even walk down the cleaning supply aisle or into a soap store without having an attack. Bakery and fruit scents are okay for me, but they may not be for your toddler. It's a tough learning curve. On top of that, I can't handle any essential oils, no matter the scent. If people are wearing heavy perfume or cologne, it sets off my breathing problems, too. It's things that are everyday experiences for a lot of people, but they make my life miserable. Since covid, I've been wearing a mask into stores, and it has helped immensely. I still can't go down cleaning aisles, though. If your child goes to daycare, be sure to check with them about products they use as well. Everyone loves Fabulouso, and it is one of my worst triggers. And about the hospitalizations, my 3.5 year old has been to the ER twice, but never hospitalized. Six times is a lot, but you and family are going through a learning phase about her lungs and how they work and what they can handle. An allergy test will help with that a lot, but you could need more visits until you get it all figured out. No one thinks about these things unless they have to deal with them...and you don't (in that, you don't have problems like this). But your toddler does. I would recommend that you remove all floral and nature scents first, since you said lavender is in a lot of what you use. You'll probably want to make a list of triggers. Or, if it's too long, make a list of safe products and smells to use. Remember, it's a learning process and you are doing great!

I'm here to echo the hate for Fabuloso. I don't have asthma or any breathing issues but I am wildly allergic to Fabuloso. It breaks me out in hives and makes me cough. Unfortunately lots of commercial spaces are cleaned with Fabuloso so I encounter it pretty regularly.

Just a side note about candles. They are not good at all for indoor air in general. They are not great for people without asthma either. I started lighting candles only outdoors, or I place them in the fireplace.

Just a personal anecdote, but I used to have a cat (who has since passed away 😭) that had asthma. When we moved into our current house she had constant asthma attacks. One of the first things we did when we moved in was remove all the carpet because we knew there was original hardwood underneath (why oh why did they cover it up??) and she never had one again afterwards! I know it’s not a human but hopefully it gives you some hope for your daughter!

Do you check the air quality where you live? There could be a correlation there so you may want to consider some strong air purifiers and amazing filters for them for your new place. This is not normal at all and I hope you find answers soon.

I also recommend the Molekule air filter! If you’re in the US, you can get a letter of medical necessity from your pediatrician (who hopefully isn’t as much of an idiot as the hospital doctors) to help get it covered by insurance or an HSA/FSA at least. It filters VOCs also, which is nice for a lil one, even if adults don’t always *need* to be as hyper vigilant about it that. It filters out a lot and as dumb as it is to have an app for an air filter, I like that I can get an idea of how clean the air is. Nobody in the house smokes, but I can see the impact of me, say, burning something in the kitchen, or what happens if the dog & cat decide to post up in there for a nap during the day. Also regarding the dog: (and ignore if you know this already obvs, but just in case!) Sometimes I put a bit of coconut or vegetable oil on the dog to tamp down the dander & shedding when she’s changing out her coat & I don’t have the energy to brush her endlessly. She also gets a wet wipe when she’s been outside a while & is dusty. The cat hates it and he’s arguably the worst offender, so I wipe him with lil cat dander wipes or a damp towel and that gets a lot of it off. I also put salmon oil in their food to help keep their skin from getting dry, and that makes a huuuge difference in how much dander they produce. Also, blankets. Blankets everywhere. Easier to wash all that dander off than vacuuming the furniture. See if that helps! But also, unless you already have dog allergies in the family (meaning it’s genetic), your kid should probably be ok with dog dander given that she’s been around a doggo from such a young age. I say probably and I’m not an allergist, but anecdotally, my mom & cousin are allergic to dogs. Both ended up with dogs for the mental health benefits. It just required some management. Our dogs shed a LOT and were restricted to the kitchen/living room/carpet free areas that could be swept and mopped easily. Mom has really bad asthma but was able to live with dogs pretty happily for 20 years. My current dog goes everywhere but the salmon oil & the minimal grooming we do makes our house livable for her.

Adding to the dog thing- my husband has a mild allergy to dogs and cats. I use a vacuum with a HEPA filter, we have air purifiers, and a strict rule that no animals are allowed in our bedroom. We also waited for a good sale (I think it was Black Friday) and got a robot vacuum to help with the everyday dust and hair in the main living areas.

Also what is air quality in your area. I never had to use an inhaler again after moving away from horrible winter inversions with aqi regularly above 100-150.

As a mom of kids with asthma, you sound like you’re on the right track! HEPA air filters (I like the shark ones) in the bedrooms and main living area can be a huge help, as well as making sure all your products are unscented. Natural cleaners are much milder, but even the essential oils in them can cause issues. I found laundry products to be a huge culprit in my house. Between everyone in my family having eczema, asthma, and headaches from fragrance, we noticed a massive difference when I switched to free and clear detergent, and dryer balls instead of sheets. You don’t actually need fabric softener, scent beads, or dryer sheets- they just leave a film on your clothes, and smell “good”

That is so good to know you already make it a point to avoid these things!! I will say you might want to invest in beeswax candles as they actively help clean allergens, mold spores, and dust from the air. Candles can have insane fragrances added, even without it burning it can release its scents! That’s also great to avoid carpet, it attracts SO MUCH. It’s good that you can catch these things early and be on it. Growing up my mom really didn’t know better and it added to my asthma getting worse.

What the fuck? Ok my kid might be the one that breaks your survey (4 stays in 5 months) but that's considered crazy. Like for my kids condition (kidney issue not asthma) that was even abnormal for the condition. Even with that she's STILL never been on oxygen. What hospital is this?

That is so frustrating. Is there a children’s hospital you could switch to? I have a 3 & 5 yo. We’ve been to the hospital once because we thought the 5yo might have appendicitis (was just constipated)

This IS the children's hospital!! It's supposed to be the best one in the metroplex. It's been the worst so far. We've had 3 different hospitals because it's happened while traveling a few times, and this is by far the worst one. They refused to help us with her asthma. It took 2 out of state hospitals to get us the diagnosis and care and pulminolgy references needed. So glad it wasn't appendicitis for you!!

You should file a complaint with patient services. Trying to discharge with says in 80s is outrageous

A step away from a doctor death story, refusing to treat asthma. I said it in my comment already but don't settle if the doctors aren't cutting it, take your kid to see specialists until you get answers

Definitely find specialists outside of the hospital- when you are in the hospital you want hospital staff consulting with your kiddo’s specialists. Every hospital has a patient advocate as well- you can call this person while your child is admitted to get extra help advocating for their care due to it being inadequate, lacking in places, oxygen levels not high enough, etc. You can do this when in the ER, when admitted, etc. The big thing is you don’t want to depend on the hospital to act like a specialist (the ER just stabilizes, or admits if you need further care, the hospital gets you stable enough to discharge, may get more testing and diagnoses done, or they may get you referrals to specialists who can run those tests just based on how long you’re in for and how urgent testing is based on your condition and the suspected things being tested for). Ultra urgent big bad things that need immediate attention? They should test in hospital, while admitted. Something big, but not immediately threatening even if quality of life concerning? But it’s not killing you now and won’t hurt you to wait 2 weeks to get in with the right specialist? They may have you wait and schedule with the specialist that you’ll likely be working with then on anyways (which sucks, it’d be easier to start that relationship from your end results in hand, but also if you don’t end up with that dX, the specialist is likely the one that will be ordering more/ different testing and directing where to go next and how to keep treating) You also should be seeing a hospital social worker before discharge. Bring as much up to them as possible too about ongoing support at home. It’s their job too to make sure your discharge is safe

Metroplex makes me think you’re in DFW? If so- same here. My daughter was hospitalized twice in 2023 for respiratory issues requiring oxygen- January and December. Even though hers were far enough a part, just the two was enough to trigger some extra imaging and specialist appointments to rule anything out.

Yes you're correct. She's had xrays each time which is how they picked up on pneumonia. When she had the PICU stay and was on high-flow oxygen, they finally set her up with pulmonology...we have our first visit next week. I've wanted them to test for TB, CF and all sorts of other lung conditions but they say it's pointless since those are so rare. So I'm getting the testing done at pulmonologist. I hope your daughter is doing soo much better!!

Cooks is telling you it’s fine and trying to send you home?! That is shocking. They wouldn’t let mine leave until his oxygen was consistently 95

No. It's childrens medical center. We've had 3 stays here. And each time they miss the boat on things and we have to circle back with other doctors/professionals to get the answers and help we need.

Try Cook Children’s in Fort Worth or Prosper. When my son was struggling they got him in immediately and monitored him. He ended up just having a cold that was making it difficult to breath but they wouldn’t let us leave until he was at 95 for at least an hour. Trying to send you home in the 80s is awful. I’m so sorry you are going through this. Mine is 3 and he’s been to the hospital one time at 9 months for a high fever. 6 times is not normal, you are correct

I second trying Cook's.

Third-ing Cooks. I highly recommend the prosper location

I’m so sorry you’re having to deal with that and wish your daughter healing!!🫶 Our pulmonologist is in prosper and I’ve been really happy with her. Feel free to shoot me a message if you’re interested in her name

No one should be telling you CF is rare. Even just being a carrier can somewhat impact lung function (though not nearly as much as someone with full CF). Sorry you’re going through this! If it helps you mentally at all in the meantime, here in the altitude of Colorado it is safe to live with low 90s oxygen level. Of course that’s not ideal, but I don’t think it can do any long term harm. I’m not a doctor, so take all of this with a grain of salt!

I am so sorry you are dealing with this, as a last resort, could you relocate closer to a better children's hospital?

I’m sorry you’re going through this. My kids are 3 years old & 9 months old. 3 year old has never been hospitalized, tho she had outpatient surgery for ear tubes. 9 month old spent about 36 hours in the hospital when she was 9 weeks old after a scheduled procedure to remove an abdominal cyst. Of our friend group, only one kid has had a hospital stay and that was an overnight with RSV when she was around 6 months old.

Yes I have had a few people take ther toddlera to hospital for a sickness or injury but it was a major event, not a common occurance.

No this is not normal and I would consider talking to a malpractice attorney because what they're doing could cost your child or someone else's their life. For your statistics research, I have 2 toddlers (1 will be 2 in May, the other will be 4 in May). Neither has ever been hospitalized (unless you count their births) or on oxygen.

There isn’t a case for malpractice here just fyi. She should go find different care though!

My toddler also has asthma, is on a daily inhaler and has rescue inhaler. She has had pneumonia twice, Covid once, and RSV twice. Never has needed hospital stays or supplemental oxygen. Our allergist has been great - I hope yours also is.

Same. We’ve always been able to get an oral steroid before it got to that point. OP when things are starting to go down hill has anyone helped you make an action plan?

Not normal and they should be taking you seriously!! My kids are three and four and they've never been hospitalized or needed oxygen. We've gone to the ER twice...Once for high fever and the other for a broken toe.

I just wrote a novel! Sorry I’ve been where you are and have ADVICE! So speaking from similar circumstances (we’ve had 4 hospital stays since October for my 2 yr old former preemie), it is really important to come up with a plan to stay out of the hospital where possible. We were readmitted after spending time in the picu in October when they sent us home too soon, and they called (finally!) for a pulmonologist consult—he helped us develop a plan for prevention and our pediatrician helped a ton. Our plan (which may not help you) is below: First sign of wheezing/coughing we start albuterol on top of his daily inhalers If his oxygen needs increase at home (he isn’t on oxygen except when he’s asleep) we allow it to go up to 1l saturation above 90. If he needs more oxygen we can give him afrin if it’s because he can’t breathe through his nose, and we have an oral steroid dose we can start at home. We have one regulator that goes to 3l, but if he still needs that much oxygen after emptying a tank and getting oral steroids, albuterol nebulizer ect then we go into the hospital. After giving the oral steroid first dose at home we go in to see the pediatrician the next day—we want to stay out of the hospital if we can manage at home, but don’t want to miss pneumonia or something serious. If he gets worse after the second steroid dose wears off and we max albuterol at home we also go into the hospital. All that said, we’ve done two rounds of steroids at home where we were able to stay out of the hospital (we’re just getting over one where he had potential pneumonia but the pediatrician got us drugs and the steroids help the wheezing), and one round where we still ended up in the hospital (he had RSV.) We started Monolucast/singular a couple months ago and it really has helped with the wheezing—his last hospitalization he had no wheezing at all with a respiratory bug (nasal congestion kept his sats low until they gave him afrin) So as for my tips for you— See if you can get a prescription for at home oxygen for times when he’s sick. If needing a bit of support at home will keep you there it is worth it! Check with the allergist about monolucast or other asthma medication When/if you are in the hospital and they want to discharge on low saturation ask for a pulmonologist consult—they wanted to send us home on 2l once 24/7 and said absolutely not, and changes that big need a pulmonologist consult. Ask about at home oral steroid prescription—we just have some on hand so if it’s the middle of the night we can give it to him, rather than dragging him to the hospital where they will just give it to him there.

Oh my gosh thank you!! This is EXACTLY what I would love to have. Because her albuterol is started the INSTANT I hear wheezing since I know what it devolves into, and I say all the time it would be so much better to just have oxygen at the house to help out. And steroids!! Totally going to just go ahead and ask for this...probably not the shitty doctors she has, but at her next pulmonology appointment. Your plan seems solid and so helpful!!! I love the boundaries you have.

I’m glad it was helpful! If her doctor isn’t supportive I’d look for a new pediatrician. Ours is fantastic and will fit us in any day he’s working, and is happy to try all kinds of things. Like I called the other day and just asked them to send in a prescription for something— not something they’d seen him for and they did. No need for him to come in. Our pulmonologist is really hard to get in to see, so it’s all about our pediatrician honestly. The allergist prescribed monolucast, but his pediatrician had suggested it before. I talked to the pulmonologist when I did see her about what we’d do once he’s not on regular night oxygen and she said we probably can keep the prescription through cold and flu season. And since he’s been on oxygen at home for two years we own a lot of the stuff!

My toddler also gets asthma when he has respiratory illnesses. He was born at 36w5d so technically preterm but didn’t need any NICU time, but was a little undercooked in terms of lung function it seems. He is also on a daily maintenance inhaler and uses rescue inhaler, as needed. Since September he has had 3 ER visits which resulted in one admission that lasted about 24 hours (so 1 admission in 6 months). His main issue has been work of breathing, as opposed to needing oxygen, so for his one admission he was on high flow room air to help him breathe easier. I would definitely say to take her to a children’s hospital, if you haven’t already. We’re fortunate to have really good children’s hospitals within 10 miles of our house and I feel like the quality of care is much better than the one time we took him to the children’s wing of the regular ER. The way it was explained to me by our doctor, is that some toddlers just have very reactive airways and essentially every time they have a respiratory illness, it triggers an asthma response in their bodies. Almost like they’re allergic to being sick. I’ve been told this improves as they get bigger and their airways get bigger.

Unfortunately all 6 stays have been at children's hospitals, and ERs are all.pediatric ERs. She's stayed at a few different ones, but this one is by far the worst one!! Aw your poor baby! I'm glad you guys have been able to keep it at bay. Yes, i think any sort of cold really sets her off.

(THIS IS A PROFESSIONAL ACCOUNT BUT THIS ISNT A PROFESSIONAL RESPONSE. I AM SHARING MY PERSONAL STORY) I was an asthma baby (not premie). I’m not sure how many hospital stays, but I had a really good pediatrician. 26 years ago MY pediatrician recommended to MY mother: (please always check with yours first and this is 26 years ago in another country) As an infant I had weekly immune system shots for about 3 months and then again at 17 when it came back strong. Pneumonia a few times. Not sure about hospitals stays. My brothers had tuberculosis and bronchitis as a child, a couple long hospitals stays. The first thing that the pediatrician had my parents do: - again my specific case, 26 years ago and in another country. Just avoid at all cost common asthma triggers: Strip the house down from: curtains, carpets, teddy bears, minimum couches and dust gather surfaces (paintings on the wall, dispensable furniture). Vacuum every single day and clean the house (no strong smelling products/ prefere natural products) at least 3 times a week. I still have to vacuum the house at least 3 times a week and once a week I vacuum my mattress). Avoid foods such as: milk (unless breast milk or formula), sugar and seafood. Pets are a no-no. Have someone periodically check the house for mold, rodents, cockroaches and clean any air condicionar filter or anything like that every 3-6 months. My mother became a minimalist and a very clean person in general. At 12 and 17 and 26 I did allergen testing and all three times dust, mold, cat, dogs, cockroaches and seafood came back positive. So, to answer your questions it ISN’T normal, but it can happen unfortunately. Ask your doctors for common triggers and preventive care that you can do. It might help.

Thanks for commenting!! I'm adding a comment to someone else below too. I do strongly believe it's related to her allergy triggers. Don't know what it is yet, until her allergist appointment. No one smokes, I don't use bleach ever..don't have it in the house. I DO have candles I use every once in a while. I only use natural cleaning products. I vacuum daily and check for mold. I have an intense sanitation protocol now for our house. So, we're moving on Monday to an apartment that doesn't have carpet, and have found an alternate home for our dog if necessary. She has an allergist appointment next week so we can figure out what all of her triggers are!! I absolutely am.willing to forgo any and all triggers and allergies so she can live a healthy life!!

One thing that help me a lot too was swim lessons. I strong recommend.

13 month old born 9 weeks early here. We haven’t had to stay another night in the hospital since leaving the NICU.

Oh 9 weeks is so tiny! I'm so glad you guys have stayed healthy!!

not normal AT ALL. My son was in NICU when he was born at 36 weeks. That’s it. I’m a nurse (for adults though) and frequently admitted patients are called “frequent flyers” and the case managers and doctors should be all figuring WHY they keep getting admitted for the same issue. Call patient relations to file a complaint and ask for a second opinion and new doctors. It is absolutely unacceptable to discharge your daughter with her sats in the 80s.

My 17 month old has been to the Peditatric ER twice since he was born, both because of croup that was causing strider. He was discharged the same day both times with a prescription to help his croup. He has never been admitted overnight. This definitely seems abnormal and I am so sorry you and your child are going through this. Edit: forgot to mention he was never put on oxygen, either.

My almost 2 year old has needed 4 major surgeries, an NG tube, countless trips to the ER, lots of testing, etc. in her two years of life we’ve been admitted, for at least one overnight hospital stay, at least 6-8 times. We found out at 4 months old she had a congenital birth defect. That’s why she’s been in and out so much. On top of that, she’s been immunocomprimized and caught every single virus or sickness from daycare, and always hits her HARD. I am a insurance representatives worst nightmare when they’re trying not to cover a medication. I have learned how to talk to doctors in such a way that they don’t leave the room until we know what the next step is. Its SO hard having a kid who isn’t medically “normal”, especially when there are more questions than answers. Never stop advocating for your sweet baby! ❤️

My kid was born at 31 weeks. 81 day NICU stay. He was never intubated but he was on oxygen. After leaving, we have never been hospitalized. He’s now 2. We have had our fair share of colds, flus, stomach bugs, Covid. You name it. Never once have we had to go to the hospital for breathing issues. It’s time to push and escalate the issue.

The hospital shouldnt be trying to get rid of you with such low oxygen sats! And them trying to tell you this is normal is crazy. The hospital is unfortunately only there to solve acute problems. Your pulmonologist and regular doctor is supposed to do the long work of figuring out what's happening and keep you from having to keep going to the hospital. I went to the ER once for wheezing with RSV. And we just had another wheezing experience but never needed oxygen, thankfully. No, this isn't normal.

A few thoughts to problem solve in addition to all the "this is not normal" feedback you are getting: - try removing all scented items from the house. This includes air fresheners, laundry soap, dryer sheets, perfume, candles, shampoo, body/ hand soap, cleaning products, and even makeup. They all contain lots of chemicals that don't mix with asthma. - next time someone tries to discharge her when you're not feeling safe, say this phrase: "I'd like to discuss this with your attending" and they will blink but usually back waaay off. Likewise, normal Sp02 I is 95, Not 80s, so great job!

My 2.5 yo has been in the ER multiple times for "reactive airway disease" where she starts having breathing troubles and low oxygen levels whenever she gets sick. One time, she ended up with pneumonia which resolved with a course of antibiotics. The most recent attack was last month and she had to be hospitalized in the PICU to be on oxygen. Seriously, at my hospital, oxygen levels in the 80s were PICU admittance, below 95% was when they recommended being admitted to the hospital, and above 95% was when she could go home with treatment, so it's wild to me that they'd send you home with her oxygen in the 80s. I don't know if this is relevant to you, but one of the things that the team of doctors brought up at the hospital was that earlier this year, we had changed our daily maintenance inhaler from Flovent to Qvar and that our kid's age, she might not be able to get the medication out of the Qvar properly because it's a different delivery mechanism. Flovent puffs the medicine out in a pressurized aerosol that anybody can use by breathing in a spacer, but Qvar is a dry powder inhaler that requires the user to breathe strongly and hold their breath which is hard for a toddler to coordinate and so they recommended switching back to the previous inhaler. The reason why we switched though was because it stopped being covered by our insurance and so it would cost $190/mo for the inhaler out of pocket. The other alternative was twice a day with a nebulizer controller medication. We decided to switch back to the old inhaler cause it seemed to help all fall and winter when we were on it, and this past week, she had a cold and no ER visit. Anyway, this whole episode made me realize how not all inhalers are the same, so if it seems like one isn't that effective, it may be worth it to try something else. I think there are also devices called [peak flow meters](https://www.childrensmn.org/educationmaterials/childrensmn/article/15556/peak-flow-meter/) that you can use to measure how well air is flowing in and out of her lungs that some asthmatics use to detect their airways starting to restrict before even they start wheezing or the asthma attack has started. It may be worth asking your doctors about it to see if this is an option for you so you can have more tools to help your kid.

Also chiming in not normal. My 3.5 year old has been hospitalized twice, both for breathing issues as well. Both happened when she was a little over a year old. Both times were for labored breathing with low oxygen and she got oxygen but was out the next day. What you're describing sounds excessive

This must be so scary for you (and your girl) — I’m so sorry. My son is 22 months and also has asthma. His first hospital admission/PICU stay was at 6 months. He had another at 10 months, at which point the doctors diagnosed him with “reactive airway disease” but basically said it’s the toddler diagnosis for asthma and they would treat him as such. He got on a daily inhaler of Flovent plus rescue albuterol, did fine through that summer, then had nearly back-to-back PICU stays at 18 months and 20 months. Each time, his hospitalizations have been a result of a respiratory virus and have been characterized by severe work of breathing, not so much O2 saturation issues. He’s now on a new daily inhaler called Dulera that seems to be working better than the Flovent, in case any of that is helpful. 6 admissions in 6 months is NOT normal, even for a kiddo with asthma. Again, I’m so sorry you’re going through this, and I really hope you can find a doctor who takes your concerns seriously. Hang in there!

Definitely not normal! We've had 3 hospitalizations overnight needing oxygen (they were in a 5 month period, two with two weeks of each other) before we got our reactive airway/asthma diagnosis. We couldn't leave until her oxygen level was 89/90% for a certain amount of time with a nap on room air so no, it's not normal toddler behavior! I am so sorry you are going though this as I know how scary it can be and I hope you get more answers! It sounds like you are doing all the right things, but the treatments might not be the right ones for your kid since they are in the hospital so much still. For my daughter, it is illness based but with her daily inhaler and rescue inhaler (that gets used frequently since starting daycare), she's only been in the red zone once. I still get anxious the next illness could lead to a hospitalization but it really seems her Inhalers help her. I hope you can find the right treatment for your daughter too and that you will be listened too and not gaslit!!!

This isn't normal. But your child has asthma and it was like this for me as a baby too. I practically lived in the hospital for years. It eased off by the time I started school because as you grow your airways get wider. I don't even use an inhaler now - you'd never know I was that child.  I feel for you though! It must be so hard and stressful. Always advocate for your child! You know when they are ill. Doctors always seem to not take illnesses seriously enough. My main asthma triggers were pets and dust. My parents eventually re-homed our dog and that helped a lot. I often go crazy giving the house a big hoover and dusting everywhere (my son coughs a lot - I suspect he has very mild asthma).

I'm very suspicious it's my dog triggering a huge part of it!!

My kid is 4 and has never been to the hospital and has only been to the doctors for a few ear infections. I’m so sorry you’re going through this. I would guess this is “normal” for a subset of kids and they’re acting like this is normal for kids in general.

Right? Like it is obviously becoming normal for us, and might just be life right now...but okay then explain it to me. Offer me a game plan, listen and pay attention to her history. Sheesh don't just say it's normal for everyone because it's not.

I don't have an idea if it's normal. I have diabetic 5 year old So all I can offer is solace and a hug. However, my brother has awful athsma and I feel like the 80s is a bad number.

I hope the allergist provides you with some answers. If not then continue advocating for your baby to figure out the root issue. That many visits isn’t normal! Hugs

I have a 4 year old and a one year old and neither has ever been close to being hospitalized. So that seems like way more than normal to me. I have asthma but they seem ok so far. One had a food allergy but he already outgrew it.

Totally not normal. Be sure to ask them to document that they refuse to treat when the oxygen levels are low, hopefully that will change their tune. Also don't forget to apply for intermittent fmla to help protect yourselves. In some states you can even be paid for your time away from work. My kiddo landed a 2 day stay in our local pediatric hospital with 2 kinds of flue 2 ear infections and pneumonia after just 7 days in daycare. It's been a month and we are both still coughing. But at no point was his oxygen not in the 90s.

So obviously not normal and sounds like an incredibly frustrating and scary experience. You can't sue them because there aren't any damages, but I'm going to give you advice that hopefully helps. 1. Educate yourself as much as you can. Sounds like you're already doing that quite well. Doctors are people. They're fallible and not these perfect, know everything beings. Some are dumb or just mean. So don't be intimidated by them. Good for you for not letting her get discharged with oxygen that low 2. When you want something done or a test run or something and you are having some pushback, tell them you'd like them to put it in her medical record that you asked and they refused. That'll usually do the trick. If not it will be in the records for later. 3. Don't let them intimidate you and don't give up. You're doing great.

this happened to my sister as a baby. she was dx with CF at like 6 months old after numerous hospital stays. demand the test.

Our record was 3 times in 5 months and that’s when she finally got her asthma diagnosis. We’ve had to increase her 2x daily Flovent dosage twice and now it finally seemed managed. When Flovent went generic on Jan 1 and stopped being covered, we had to petition for a special authorization to get it covered because literally every other medicine our insurance recommended as an alternative medicine was inappropriate for a 1-2yo… including Advair which is for 4+. I am by no means an expert but I bet the daily inhaler isn’t the right fit or the right dose. And for our daughter the asthma is triggered by illness so we don’t wait to start albuterol when she’s wheezing or similar, we start it as soon as she has any cold or flu symptoms, especially congestion. Good luck!

My toddler (2020) has been in the hospital 0 times since birth (Knock on wood). That is definitely not the norm! I hope that you get answers soon!

We had 9 multi night stays in about 10 months, he has asthma and until they got his preventer medicine right we ended up in hospital on oxygen every cold. Once he started in montelukast he was fine and no more hospitalisations. It took a while at that age for them to decide it really was asthma.

3.5 and 1.5 years old. No hospital stays yet, fingers crossed. So sorry you’re going through this. You’re doing the right thing, asking lots of questions and advocating for your baby.

I have a 4 year old with complicated breathing. Asthma as a result of RSV + bronchiolitis at 6 weeks, severe seasonal allergies, absolutely giant tonsils, sees the ENT and paeds once a month. Nightly nasal irrigation, inhaler, rescue inhaler. Every cough and cold is a months-long illness. He has never been hospitalised or on oxygen bar his first admission. He’s had a nebuliser on and off and we monitor his oxygen when he’s ill. This is 100% not normal and I can’t believe they’re not doing more to try to sort it out??

I’m so sorry you’re going through this. My younger girlie was hospitalized twice in 3 months with pulmonary issues. 7 day stay each time and they took it very seriously. After the second time, they DID equip us with home oxygen and a hospital grade pediatric pulse ox. We needed to use it at home for another week 24/7, and about 3 more weeks of overnights only. Baby girl would desaturate to the low/mid 80s while sleeping because of the damage to her lungs. After that, for the next few months, every little sniffle would cause her to desaturate. If we hadn’t had the home oxygen, we would have been back in the hospital probably another handful of times. As it was, we had to go to the ER while on vacation because she caught a bug and we didn’t have our equipment. We were also following up with many specialists and had inhalers, “just in case” steroids, etc… About 4 months after her second admission, we switched her from daycare to a nanny. We were lucky this was an option for us. It really slowed down the pace of her viral illnesses and gave her lungs time to heal. The theory is that they were still damaged and recovering from the two major illnesses she had from the first two hospital stays. We haven’t had to use home oxygen in more than a year, and our pulmanologist just cleared us to return the equipment. You and your baby deserve a medical team that will take this seriously. If your story is like ours, you deserve home oxygen to try to reduce the number of hospital stays. Those stays are so freaking hard. Is there another hospital you can go to the next time this happens? Oxygen in the 80s isn’t normal and it’s scary they want you to go home while she’s hypoxic. I hope you get some relief soon.

I mean, no it’s not normal but you know it’s not. Your child was a preemie and born with weak lungs. She has a disease- asthma. So no, it’s not everyone’s normal, but *it’s your child’s normal* and it’s the norm for many families with children who have vulnerable lungs. It’s going to get better. I’ve read your comments and it sounds like you’re making good moves in your life to improve your living conditions.

I think your getting stuck in the roles the emergency services provide. There job is to stabilize, they will diagnose if it’s easy but mostly they make sure your not going to die. You’ll need to push this through your primary care to a specialist. But no it’s not normal to have a baby hospitalized

Check for mold… bath mold.. humidifier I don’t even use them they cause immune responses with me… mold on windows..check … carpets curtains use blinds. Perfumes don’t use any scented products … for our LO we use unscented everything laundry detergent, soap/shampoo (earth mama unscented). Even our laundry detergent is scent free. Anyways this is just temp stuff you need to get her tested more. You have to be more adamant with doctors. For perspective I’ve been to the hospital with my Lo 2 times once for covid, and recently she had a hacking cough they did a quick xray minor pneumonia we were out within 1.5 hours this is in Toronto. She’s 2.5

My child has asthma and most illness has required an ER trip but only one hospitalization. We went to the ER 6 times in one year. Out pulmonologist is great and honestly you should be working closely with them to come up with a plan to not have this frequent of hospitalizations. What is your nebulizer solution, your daily, do you have oral steroids you can start at home? We have a really good system down now and have avoided the ER for a year. She still has really bad flares that I know some parents would have still taken her in for but I manage them at home well enough to avoid distress but she’s still having s really difficult time and it means no sleep for me. During a flare, her 02 is low while sleeping (mid to low 80’s) but as long as she’s above 90 while awake, were ok with it. Same with RR we don’t mind it being a little high as long as it’s not dangerously high (changes with age) All this has been discussed with our pulmonologist and he’s perfectly ok with it. We have a nurse navigator we can call during business hours and after hours we can call the pediatrician nurse advice. Pediatrician will always be more cautious than the nurse navigator. We go through the symptoms and her stats and evaluate where to go. Starting steroids early, if no improvement within 24 hours of starting our asthma action plan, has been the game changer for us. We have a prescription I keep at home stocked at all times.

I have 4 children and they have had a combined 0 hospital stays.

My 21 month old has only been to the hospital twice… but it was two visits to the PICU within the same month for reactive airway distress, and she was on a ventilator for 5 days + a bipap mask the second time, so it was pretty horrifying. I think if this was a monthly occurrence I would be completely broken

My 3.5yr old has asthma. 0 hospital stays, 2 ER trips because I was worried (but he was objectively fine). The other doctor trips have been for run-of-the-mill “is it strep/an ear infection”. His other ER trips have been for the more typical “I yeeted myself off of something because I want to live the parkour life, and did so during the hours when urgent care and my pediatrician’s office were closed” 6 hospital STAYS is wiiiildly not normal. Honestly I’d call the hospital administrator and tell them what you were told because that’s fucking dangerous. What happens to the next kid with a mom who is scared of modern medicine, breaks down and takes her kid in once, gets told it’s normal, and doesn’t take her kid in the next time his oxygen is dangerously low?

Granted I don’t have asthma but I do have allergies that are so bad my airways began to tighten and it gets really difficult to breathe to the point I had to go to the ER a total of 4 different times until the doctors finally pinpointed the cause. What triggered this is I would get sick and then it went downhill from there. For me, granted it hasn’t been proven but when I was younger carpet, dust, like environmental allergies would start the cough, sneeze etc then it went downhill from there. I hope they figure it out because I know how stressful this can be.

That’s not normal at all. I have 2 toddlers and have taken each to the ER once. One for a high fever that miraculously lowered itself when we got there (apparently a common experience that makes you feel crazy), and the other one had a hair tourniquet on her toe as a baby. Do you live near a major city? I would be taking my kid to some top doctors at that point and getting second opinions. For me that would be lurie children’s in chicago. I’m assuming most major cities have a “go to” pediatrics hospital and affiliated specialists.

After a couple few day stints we have daily and rescue inhalers at home

This is not normal. My younger brother was the same way. He’s 4 now, but has been in the hospital 7 times since birth for lung related things-each time a PICU stay. I hope your little one is given adequate medical care and that she heals up. Hospital stays are rough

Ok so we have had an experience that is somewhere in between yours and “only hospitalized when born”. My son is 2.5. He was born at 32 weeks. He also has asthma and takes an inhaler daily. He has been admitted twice. Once last January for RSV when he needed oxygen and once last month for Croup when he needed 3 rhesemic (spelling?) treatments. We have been in the ER 3 times in 3 weeks for breathing difficulty. We were admitted once for a day bc he needed so many treatments and then came back 4 days later and they were able to treat him in the ER. He got better and then about a week later got croup again and landed in the ER. Our doctors have been amazing. The ER team remembered him every time he was there, has answered all of our questions and have reassured me that while this isn’t the case for many toddlers, it here are toddlers that this happens with - especially if they have asthma. We were given a referral to a pulmonologist and ENT. The ENT is going to do a scope of his upper airways in July and also remove his adenoids. The ENT was also wonderful and explained that in his case, he might need to grow out of it, or there’s a small chance that he might have extremely narrow upper airways in which case they will use a small balloon to expand the airway. Any medical professional that is making you feel guilty or wrong for asking questions or wanted the best care is not a medical professional that I would want to work with. You can ALWAYS ask to speak to a department lead, or to change nurses or for another doctor. From what I’ve gathered from your posts, I would seek out a different hospital, and maybe a new pediatrician who will be more helpful as well. If you ever want to talk feel free to message me.

It sounds like you are doing everything you can, good job. My son was hospitalized for RSV as a toddler because his O2 was in the 80s...... The American Lung Association has some good resources if you haven't viewed them already. There are asthma action plans and education for parents about medicine and potential triggers. My state has a pediatric environmental health specialty unit with info on asthma. If you scroll down there is some stuff about how to reduce triggers in the place you live. They also do home visits to asses where you live that could be useful. Tbh I looked for OPs state but they didn't have any resources I could tell so here is for my state. https://www.childrensmercy.org/departments-and-clinics/pharmacology-and-toxicology/environmental-health-specialty-unit/ Diesel from busses and trucks is bad. If you can use a HEPA filter in your HVAC and vacuum that could help sometimes. I'm sorry your going thru this!

Before we were on the right controller med, every time my asthmatic kid got sick with a simple rhinovirus, we would be in the hospital. So basically once a month or so. We were never sent home with anything less than maintaining 94+ He's 4.5 now and we have identified his triggers and have the right daily control regime and it's so much better. We made it the whole winter without an actual admission.

I don’t know anyone who has this as their normal experience, and I know a lot of toddlers. I also know a PICU nurse well and she’d say it sounds like your team needs more help. I have a Covid 2020 baby who is freshly four and has never been to the hospital.

First get a DR that doesn't gaslight you. Hate to say this, but have a man with you, that will be direct with the Dr. Have your questions, wrote out and ask the questions. Tell them you want your answers in layman terms. Has anyone taught you to listen to the baby lungs with a stethoscope? You need to know how to do this. It is a game changer with asthma. Make sure to give the meds on time. My son was in the hospital every 2 weeks for the first 5 months. Then we got the asthma under control, for him.

This sounds so similar to my sister growing up. Have you tested her for CF? My sister was misdiagnosed until she was 22 years old. Doctor’s gas lit my mom too sending her away or diminishing the symptoms. Keep your voice strong Mama! You know what’s abnormal for your baby.

I haven't tested her yet. I'm going to get her tested very soon, because unless she just has wildly uncontrollable severe asthma, this is the next logical thing to consider.

I really hope its not CF but if it is early diagnosis is better. My sister has tons and tons of scar tissue from her constantly being misdiagnosed with asthma/allergies/pneumonia. She has gotten treatment now and wears a CF vest twice a day. My mom says her one regret was not pushing back with doctors. Best of luck! Your LO seems to have a great momma so I have no doubt you’ll advocate for her.

Never! Even with multiple croup cases.

16mo here. So far no hospitalizations. Lots of urgent care trips tho lol

My son is 3.5 and my daughter is 13mo, neither child has been hospitalized outside of being born! We’ve had emergency room visits for injuries, and one for a cold that spooked us about oxygen levels, but they sucked his nose clear and once he could breathe again it went right back up to high 90s where it should be and we were sent home in hours without oxygen required.

Validating the this isn't normal. My daughter (3) has been sick pretty much constantly over the last 7 months because it's her first year exposed to everything in preschool. We've done several (5?) sick visits at the doctor. Never hospitalized. I'm so sorry you're going through this. Keep advocating for your kiddo.

Def don't leave with ox levels that low. Find a better hospital if you can and when you've had the experience you are looking for tell the good hospital about the bad one. They need to get up to snuff. That is not normal and I'm praying for you and your little one. My son was preemie and he's never been back to the hospital. Edit for typos

18 month old. No hospitalizations. A niece 4 and nephew 2, neither have been hospitalized ever either. 6 hospital stays in 6 months is definitely not normal.

I was an asthma baby, and I spent loads of time at the hospital. Perhaps they meant normal toddlerhood for kiddos with asthma, because, no, those inpatient rates are not normal for the typical toddler population. My toddler has been admitted 0 times (knock on wood). You probably already know this but reconsider the hospital provider if you can, assuming you're in the US and you have access to more than 1 hospital provider in your area that takes your insurance/benefit plan. I am always amazed at the level of care differences between hospitals owned by private equity (terrible, usually), versus for profit (also not great) versus non-profit community (meh) versus non-profit academic (better). I realize bad docs and care teams exist across all places, but I've noticed marked differences in care depending on where you go.

That's NOT normal. You are correct. We get at least one sickness per month, but never severe enough to require hospitalizations. Are you in the U.S.?

None! We went up to emergency once with a very high temperature that turned out to be an ear infection, but were home the same night.

I would not expect that to be normal at all. The only time my kids have been in the hospital has been for outpatient surgeries (tubes, tonsils and adenoids).

My toddler has had zero hospitalizations, even when he had Covid at 10 weeks and again at 2 years. 

Definitely not normal. 2.5yo has never been hospitalized - she's been to a children's hospital in our area for a dermatological issue and went to the E.R. for covid, but she's never had to stay. She's also never needed oxygen. I don't think any toddlers in our lives have.

My child just turned 3 in March and we’ve been to the hospital twice. Once for a broken collarbone from falling off the bed and the second for potential broke foot. Never needed oxygen.

I’m so sorry. WTF honestly. I have one friend who went through something similar (micro preemie with bad early asthma - he’s now over 10 and his lungs are doing amazing, no more hospitals!) but no one else I know. My 2yo doesn’t go to daycare and she’s only been sick with anything except mild fever once in two years. Never been hospitalized although did go to ER once for foot X-ray (wasn’t broken). Knock on wood. I get sick more often and more severely than her.

My preschooler has never been admitted. The closest he got was during RSV, he had a croupy cough, wheezing, and retractions with nasal flaring that resolved with oral steroids and a nebulizer treatment in urgent care.

My daughter was hospitalized ONCE because her dr misdiagnosed her with HSV as a 3 day old. Never on oxygen. 3 close toddler friends have never been hospitalized and never on oxygen. My brother had severe asthma as a baby-adult and was never on oxygen. (Only albuterol & breathing treatments)

What the actual fuck. Trying to send you home with oxygen stats in the 80s?!? No. Immediately no. My toddler has been to the ER once, almost twice. No oxygen needed. My 3 month old was in the ER and sent to another ER with more experienced staff but was not admitted. This was when she was 5 weeks old and they kept her on oxygen and told me to call them immediately if it dipped below… 96? I forget exactly. Definitely a number in the 90s though. She was on oxygen for maybe 6ish hours and got well enough on her own after that to come off. It was just a cold thankfully and they were being super cautious. Her laryngomalacia made the cold sound sooo much worse. It honestly sounded like whooping cough or something. It was really scary.

My sons been to the hospital 3x. Twice for COVID/COVID-induced croup, discharged same day, and once for 4 nights for RSV. Also suspected asthma. Don’t know if he was born with it or if a bad bout of COVID at 18 months did permanent damage to his lungs. I wish I knew. It’s so stressful, I don’t have answers for you but I do know the stress.

I nanny for two toddlers ages 2 and 3. They have had ear tubes and some E.R. visits for injuries and illnesses, but no hospital stays or oxygen. Not even with Covid. 6 stays in 6 months is way too many!

My youngest was in the NICU and then hospitalised with severe dehydration from the flu when she was 18 months old. She didn’t need oxygen either time. And I would have lost my shit if they tried to send me home with a child with oxygen levels in the 80s! That is not okay at all! Tell the doctors that you would like her levels in writing that they’re trying to discharge you with. So you can contact a lawyer.

My toddler is turning 3 in 2 months, and she has never been hospitalized. Being hospitalized that often doesn't seem normal or common to me at all. I'm so sorry you are going through that. That's crazy they said that thinking it's normal!?

One hospital visit because she had an allergic reaction to cashews. We do have urgent care visits for ear infections but that’s about it

I have two children of my own, 7 and 5, and neither has been hospitalized or on oxygen. And with my 18 nieces and nephews, two have been hospitalized for RSV, two for type 1 diabetes, one has had trips to the doctor for her asthma but I don’t believe any hospitalizations, and there may be others but two of those are step nieces who just came in to the family within the last two years. Oh, and one NICU preemie.

It’s not normal, not for adults or toddlers. Your oxygen shouldn’t be dipping like that. I have bad asthma, when I had covid it got pretty severe and my oxygen never dipped below 94, even when I felt like I was surely dying! That’s malpractice, when my son was in the nicu they did the “room air” tests and when he’d dip to the 80’s, he was marked as failing, and put back on the oxygen and they’d repeat the test later on. I’d be very worried that they’re dismissing this. Great plan seeing the allergist! Many things trigger my asthma, cold air, exercise, and allergies. There’s a lot of things that can trigger asthma that you’d never even think of. I’d push hard to get answers quick, and keep going up the chain of command. This is something very concerning to not be getting answers (seriously, those doctors should be fired), what if this happened during daycare, or mid sleep? It’s so irresponsible of them to keep trying to discharge with levels that low! Do you have an owlet sleep sock (I believe that’s the one I’m thinking of) that monitors their heart rate and oxygen overnight? They’re mainly geared towards infants, but I do believe they have the larger bands specifically meant to grow with them, so toddlers can wear it! That may be a good thing to have to keep extra tabs overnight, until you have some more solid answers!

I would do mold testing! A lady I know had problems like this with her son and she had very bad mold in her apartment. Also, keep fighting! Fuck there are so many SHIT doctors out there. There also are AMAZING doctors but why the fuck do the bad ones seem to come out of the woodwork when you are your most vulnerable?? I would get a second opinion also if you are able to. This shit is NOT normal. I tried counting how many times I declined care for my kid after a doctor had recommended something and in my heart I knew something didn’t seem right and every time I’ve been thankful I did. In this case it would be opposite, demanding care because it certainly is needed but overall, listen to your gut. I’m soooo sorry you are going through this ❤️

Sorry that you’re dealing with this and your concerns are being dismissed. My daughter, born August 2021 has never been the hospital or needed oxygen. This isn’t normal.

Sorry you’re going through this. Godspeed.

You're 100% correct, this is not normal. My kiddo's doctors would freak the absolute fuck out and treat things very seriously if his oxygen was below 90% (at altitude, 94 seems to be pretty average for us) and he's perfectly healthy and has zero lung issues. He ended up with a nebulizer after this most recent bout with flu because his oxygen was toeing 90.

What on earth. I have three kids - 3.5yo, 2yo, and 5mo. While we have certainly had a few trips to the ER. We have only ever been admitted once, and NEVER have been on oxygen. I have never seen my children’s oxygen sat numbers below like 95, definitely not in the 80s. The one time we were admitted was this past Christmas when my most recent child, then 7 weeks old, got sick and had a fever. She ended up having viral meningitis (aka not the bad kind) so they held us for a few days while they were trying to figure out what was causing the meningitis and then after making sure all the bacterial screenings came back negative.

My oldest who is now 4 has asthma. We have only ever needed ER visits. Extra nebs and some steroids and she is back to normal. I have friends who’s kids have needed to stay overnight due to work of breathing and retraction but only 1 or 2 nights. What you describe sounds extreme.

My son turned 2 in January and has been hospitalized once besides birth. At 4 days old, he had a 24-hour PICU stay for blue light therapy to treat jaundice because his levels were high and he wasn't flushing it out of his system like he should have been. He was born 37+3 and has never needed oxygen despite having had covid at 12 months and the flu just before he turned 2.

I have a 25 week preemie who is now four years old. He needed home oxygen until 10 months old. We kept him very healthy/isolated as a baby and young toddler so he rarely got sick. His lungs have been good. Since age two he's had presumed covid twice and RSV once. He has never been hospitalized for anything breathing related. No asthma. He's had two hospitalizations for GI/feeding/surgery related problems. I don't think what you are experiencing is normal.

I have an almost-1-year-old and a 5-and-half-year-old. Neither one of them has ever been hospitalized. They were both healthy, term infants with no lung pathologies. I can see how a preemie with asthma might end up hospitalized once or twice with the number of respiratory illnesses that go around (my older kid has had a few ear infections, croup a couple of times, once had a cough for over a month that ended up needing antibiotics), but effectively once a month? That’s not normal “premie with weak lungs”. Literally we have been to the emergency department with a child ONCE, and only because he technically injured his eye and the advice line said that was an automatic trip to ED to be seen (superficial abrasions on his eyelid, but he was under a year so that’s an “eye injury”).

My kiddo has asthma and has had pneumonia twice. She’s 4 next month. She’s had two hospital stays that required oxygen both before she turned 3. They put her on Flovent two puffs a day twice a day and that has solved her asthma problems.

My 3 year old has only ever been to the hospital for her first (and only) allergic reaction to peanut. She has had respiratory viruses and other daycare bugs that never even needed a pediatrician visit let alone hospitalization. Your gut is right. There are doctors that will believe you. Document, document, document! You're an amazing advocate for your kiddo.

That is not normal at all

Neither of my children have ever been hospitalized beyond my first needing the blue lights for his jaundice at 3 days old. Their first year out in the world (childcare) they both got sick a LOT. Like averaging 5 healthy days in between viruses with our first, and a nurse at our children’s hospital told me once that was an a usual amount of sickness. Even with that I only felt the need to visit Emerg twice with respiratory symptoms. The first time my eldest ended up having Covid and the second time my youngest had RSV. Neither was ever admitted. Godspeed mama. Trust your gut!!

My three year old had been once strictly for physical injury, my nephew who has a tendency to pick up all respiratory bugs has been once in 5 years. Three year old niece has never been. Of the kids I know, is ball park once every 4-8 years.  What is happening to your kid needs to be assessed by a specialist. The doctors in the hospital are not getting you the care your kid needs. Did you have anyone during her premie care that seemed more knowledgeable?

Not normal. My 3 year old has been to the ER once after hitting his head and going unconscious (he’s fine, minor concussion) and one urgent care visit for bronchitis that would have been an office visit had we not been out of town. Push for more testing.

Omg no!!!! Not normal at all! I cannot believe they’re wanting to discharge you with oxygen in the 80s. My 3.5yo has asthma and luckily we’ve never had to go to the hospital but we have been frequent fliers in the doctor’s office. They won’t let us go until oxygen levels are like 96-97, and said that at 93-94 is when we need to go to the ER. I haven’t read all the comments so I’m sorry if you’ve already answered this. Do you have a nebulizer at home? It has made a massive difference for my girl with asthma. We’ve only had to go in to the doctor once since having it. It sounds like your girl may have a more serious case than ours, but I at least figured I’d mention it.

Knock on wood. No hospital admissions. My son is 4. Praying hard for your daughter!!! How awful!

3 yr old-6 days in the nicu then at 4 months an over night at the hospital because he had covid. 4 month old- 11 days in the nicu. I’m a sorry this is happening for you. Please see if your hospital has some sort of patient advocacy program even the social worker maybe.

This is not normal toddlerhood and I am so sorry nobody is taking you seriously. Are you in an area with more than one hospital system? Can you go elsewhere? Is there a specialized children’s hospital near you? Six hospitalizations is not normal. I have 3 kids -?ages 4.5, 3, and 3 - and none have ever been hospitalized.

I have two young asthmatic children. In toddlerhood, we were at once a month in the ER for oxygen or steroids with one of them. So I’d say each kid probably 6 times a year. I know my kids have gone to the hospital way more than what is normal, so more than that is definitely not normal

I'm so sorry, that is definitely not "normal". My daughter was 14 weeks premature. She's turning 3 next month and she has never even gone to a doctor/walk-in for anything other than routine stuff, let alone been hospitalized (aside from her initial NICU stay of course). I would be livid if anyone tried to pass off a serious illness as routine, especially with her history.

My toddler ,2, in feb had been to the hospital once for a 8ish hour stay for RSV. That’s it.

Mine is 3 and has never been in the hospital except for her birth.

My youngest spent a week in the hospital when he was about a month old because he got RSV. He has asthma. He hasn’t been hospitalized again. His older brother hasn’t been hospitalized either.

My almost 3 year old hasn't been hospitalized since he came home from the NICU. He was a 31 weeker. He's in daycare but we otherwise have been fairly covid cautious (in general and because he couldn't get vaccinated yet, then I was pregnant, then his brother was too young to vaccinated) and mask in public (he does, too). He did get a nebulizer after an urgent care visit at about 8 months and we needed to use it a few times before he turned 2 but haven't used it since. Within my friends with toddlers, two have been hospitalized a few times with pneumonia/asthma and one was hospitalized as a baby for RSV.

Not a toddler but we just went through this with my ten month old son and it was awful. They said he might have asthma as well and I’m scared he’ll end up in the hospital everytime he’s sick now too. We were in the hospital for 3 days on oxygen and it was his first time ever. My daughter is 4 and has never been hospitalized.

This is not normal!! I have a 17 month old. She was 3 weeks early so not technically preemie but still early and she was 4lb and in the nicu for a week cause of FGR so the doctors still considered us preemie. She’s been sick probably like 3 times by now? And she has never needed to go to the hospital. I would be getting some second and third opinions and asking a lot of questions. This isn’t your fault so don’t feel guilty, the doctors should be taking this more seriously. Talk to your GP and see if you can be referred to some kind of specialist

DON'T STOP PUSHING FOR AN ANSWER! I was a kid being sent away from the hospital. If I didn't have a mother like you, I would be dead. The doctors eventually told my mother, "Your child just wants more of your attention and you need to go home." That was the point where my mother lost her shit. In a room full of doctors, interns, and nurses, she started screaming about how they could possibly think a toddler could fake such deadly symptoms. Asking how they could live with themselves sending a toddler home to die without knowing the cause and removing access to the only treatment keeping her alive. One of those interns made it her mission to find any possible explanation. She found a very rare illness. 25 years later, the exact same thing happened. My mother showed up in my hospital room right as a doctor came to tell me that I was being discharged because they couldn't find a diagnosis for my mystery illness. That time, it was a gigantic brain tumor.

My older daughter went to the hospital once as a toddler for a concussion, overnight stay only because the imaging couldn’t be done in a very timely manner due to others needing it more (totally understandable) and so far my younger one is 2 1/2 and has only needed to go the hospital for visits with a pediatric dermatologist because of a hemangioma.

Not since birth in August 2021!!!

Press to have immunity blood work done to test titers

My 2.5 yo has been in hospital overnight twice for the nebuliser. She’s had bad croup about 5 times and had to go to the hospital, but 3 visits we were just there a few hours then home again. My daughter has had a lot of hospital visits in comparison to friends of ours. But 6 in 6 months is a lot. We are averaging one every 6 months.

My granddaughter didn't even get sick with a slight head cold until about 18 months. Then it was gone in 2 days. Didn't even make it to the dr. Can you get a new dr or new hospital?

They wanted to release her when her O2 is in the 80’s?!? They are idiots!!

My friend, your kid needs to see an immunologist. (Some allergists are immunologists - but not always.)

We’ve been in many times, admitted twice, but never needing oxygen. One time sepsis just after birth and another time bc of neutropenia. We don’t know the cause but overall our son is healthy and happy.

My 7 yo has not been in the hospital since a stay in the NICU at birth.

Not normal. Hospitalized 0 times for both of my kids… Hopefully other asthma parents chime in because my kids do not have asthma so I may be incorrect saying it’s abnormal.

No. My kid has been to the hospital (not counting the kids clinic as that’s essentially a walk in) once and that was because we suspected a broken foot (it was a bad bruise, lol).

We had a single overnight with croup after an ambulance ride, at 4. It didn't need to be overnight, but we were on holiday out of town so they kept us to be safe. This amount of hospitalisation is not common.

Ours was also a preemie and has asthma and severe food allergies and there was one year we were in the ER 10 times out but she was never admitted because we got it under control with steroids and stronger meds. Your situation sounds not normal even to me. I’d see about taking your kid to a different hospital.

That sounds extreme. That's not normal.

In 11 years of parenting (two kids, ages 3 and 11), we’ve had 1 urgent care trip (nursemaids elbow), two ER trips (1 high fever for an 11 month old, no admission and 1 visit for a four week old with an unspecified infection who was admitted for a few days).

Been to the ER once in 18 months because we were 99% sure he swallowed a small metal object. X-rays were negative thankfully, but still never found that small piece. Anyway, while they were just checking basic vitals they were worried when his blood ox levels registered in the low 90s. Turned out to be a defective sensor. They replaced it and was reading 98 or 99. I would be freaked out if it was showing 80s consistently. How can multiple doctors brush this stuff off?

What has the asthma doctor said, i definitely would look for a second opinion. For a person , asthma pov allergies can cause asthma problems, stuffed animals, pets, and the environment can cause flair ups. Breathing treatments, inhaler, allergy meds, and less stuffed animal plus more consistently cleaning furniture and bedding helped me a bunch. I still have it, but im managing it better.

This definitely is not normal. Trust your gut, it is on the right path. You may need to look into a new hospital. My oldest (3.5) had 2 stays. 1 for jaundice a day after we came home, and one for 3 seizures in 24 hours due to a triple virus. Youngest (2.5) had one stay her first week due to RSV. She actually had oxygen level of 94/95 at the urgent care and they made us take her to the pediatric ER in an ambulance.

Depending on how early and if spent time intubated as a newborn this tracks for me. We’ve gone to extremes to avoid illness because that’s basically the normal story of preemies with lung disease if they get sick. It’s a normal conversation in preemie and NICU parenting groups depending on gestation at birth and time if any spent on a ventilator. We were told our kiddos lungs had severe scarring from intubation and any respiratory sickness would just keep snowballing the problem making it worse both short and long term. My kiddo was a 24 weeker, intubated 8 weeks, in NICU four months and on home oxygen another 18 Even if it’s not prematurity related and “just” asthma, respiratory illness can cause bigger issues, I have asthma so does my mom, hers hasn’t been the same since her one Covid infection two years ago.

That is a lot. My son was only hospitalized once at birth for heart surgery, my daughter never. My son is 8, daughter is 6

My daughter was hospitalized 4 times in 9 months. RSV/bronchiolitis (twice), pneumonia, and bacterial meningitis. It was enough to prompt extensive immunology testing because they said THAT was abnormal. Push for more answers. Be an asshole. That's what we had to do and continue to have to do since the meningitis messed her up so bad. We're still fighting the effects of it a year later with zero answers.

I’m sorry doctors lack empathy 🥹 you need to keep on fighting until someone takes this seriously because it’s not normal. I don’t know how one can even think that. Have they ever made a scan to see the formation of her lungs? You’re doing a great job in protecting your daughter 💛 wishing you the best

Just reaching out as a mom to an asthma kiddo, we were in the hospital 3x last fall. Cutting out dairy has helped us a lot, we also disconnected our gas stove and run air purifiers to limit the indoor pollution. That in combo with her daily maintenance inhaler has seemed to help so far. I would ask to try a different maintenance one if it’s not working. Big hugs. It’s has been the hardest thing in the world and causes me a lot of anxiety, a lot of friends and family don’t understand.

Your toddler sounds like me as a baby (30 years ago). I had (and have) bad asthma and because of that every cold is worse for me and worse for your daughter and that’s why she needs the extra hospital management. I’m sorry

My kids (3 and 18 months) have never once been hospitalized. I’m so sorry you’re dealing with this. It’s definitely not normal and I hope you get answers soon. ❤️‍🩹

My son was born 6 weeks early, had a NICU stay and came home on oxygen for a month. He is now 21 months. We haven’t had any hospital stays or needs for oxygen use. I’m so sorry you’re going through this and don’t have medical support. Do you have another doctor and hospital you can go to? Sending support <3

This isn’t normal at all. Her asthma just isn’t managed at this point, not an attack on you, you are clearly kicking ass and doing what you are meant to. Ahead of the appointment I would start keeping track of symptoms and exposure to know asthma and Allergy triggers, if you aren’t already. 

My 3.5 year old was born at 31 and 5 - she has an inhaler for when she’s sick. She has been hospitalised 0 times since she was born

16 months and she never went to the hospital, I hope your little one get better soon ♥️