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Child with severe asthma

Hi everyone. I am new to this website, and have actually never participated in something like this before.  My son (who is 6) has TERRIBLE, uncontrolled asthma.  He was finally diagnosed just before his second birthday. He can present with different symptoms with each exacerbation (anywhere on the severity spectrum), has probably every known trigger out there, and pretty much lives in the yellow zone. He also is highly allergic to dogs and peanuts, and has eczema. We usually have to get oral steroids 6-7 times a year. He has never been "hospitalized" for his asthma or turned blue, and his yellow and red zones are "hazy" (meaning he is "red" on paper, but not severe for 911 – he is a trooper; tough kid).  

I am wondering if anyone has ANY suggestions to help make his "living with asthma" a little easier.  Does anyone have experience following an "anti-inflammation" diet – does it help?  Has anyone tried using local honey to help relieve allergy triggers?

Thanks in advance,

Pam  

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  • K8sMom2002

    Hi, Pam and … There's nothing scarier than seeing your kiddo struggling for breath.

    I'm a little confused how he can be "red on paper" but not severe enough for 911 — do you mean you take him to the doctor yourself and don't bother with calling 911?

    Just so that I know what you've tried and what you haven't, a few questions …

    • Is he seeing either a board-certified allergist with experience in food allergies? 
    • What sort of meds have you tried to control his asthma?
    • What sort of environmental allergens does he have?
    • Have you kept any sort of journal about his exacerbations and triggers? Does that show any sort of pattern?

    We are here for you! 

  • Pam

    Thank you! Yes, I take him to his doctor or the after hours office that is open. His doctor is wonderful about seeing him.  He uses Dulera and Singulair daily for maintenance, and Zyrtec almost daily.  There was no noticeable improvement (or fewer trips for Prednisone) since starting the Singulair (~2 years ago).  

    He does see a Pediatric Pulmonologist and has seen two different allergists, but our insurance would not pay for true Pediatric Allergist.  When we did see the allergist back in July, he changed his maintenance inhaler from Symbicort to Dulera. He did not think foods were triggering it. I feel like I haven't gotten anywhere really, with either the Pulmonologist or the Allergist. He has failed PFTs twice now. 

    He can have all the "Red Zone" symptoms, but still be (trying) to run around and play.  I usually have to force him to rest. He's tricky, because he will sometimes "look fine," but be completely obstructed once you put a stethoscope on him. 

    I had a completely normal pregnancy with him; he was full term; normal delivery with no complications; no other health issues.  

  • K8sMom2002

    One thing that comes to mind is that maybe environmental allergens are adding to the mix. If you know his environmental allergens, you can compare them to what's blooming in your area at  … 

    Other things that are low-hanging fruit: what sort of air filtration do you have? Are you vacuuming later in the evening? (Our doctor has suggested we don't vacuum in the evening, but give pollen time to settle.)

    Do you use on the bed? The link I included leads to Certified Allergy and Asthma products that have been tested to be sure they do help with allergies and asthma.

    I really, really believe that "uncontrolled" = a pattern that hasn't been figured out yet. Our DD has a rare bleeding disorder, and she would have frequent nosebleeds. If we hadn't kept a journal with every bleed and what she was doing before that, we would have never figured out what was going on. 

    I know that we have others who have dealt with a situation similar to yours and I've sent up a flare — hang tight, Mama, we're here for you!

  • Pam

    It has been a long 4+ year journey thus far, and I have felt alone for most of it. I'm so glad to have found this.  I failed to mention he did have some allergy testing that included environmental things – he is allergic to blue Kentucky grass and one other thing I can't recall off hand.  We use the most expensive air filter available at the usual retail places (that's supposed to filter out the most stuff).  We've used cold mist humidifier.  Other than finding a bubble to keep him in, I'm at a loss.  

  • Kathy P

    Hi Pam and welcome! Glad you found us, but sorry you need to be here.

    Sounds like you've been dealing with this for a while. Has he ever been "stable" where he was not having flares? What do you mean when you say he's "failed PFT's"?

    What have you noticed is his biggest trigger?

  • Pam

    He has had Pulmonary Function Tests twice this summer and results showed significantly below normal lung function. We know that dogs are a big trigger and therefore can't really go to anyone else's house because it seems everyone has dogs. Colds and viruses are the only other thing we know for sure. He might get over the cold or illness, but then the asthma will set in (the asthma does not always flare at the time he is sick). 

  • K8sMom2002

    We're glad you found us!

    That's extremely isolating to have to avoid other folks' homes.  

    On the PFTs … was he having an exacerbation at the time? Or did he seem pretty good and the PFT results surprised you?

    You sound really frustrated with your current doctors. What could make that better? Sometimes I've been able to salvage a relationship with doctors when I went in and had a frank talk about the ways I either didn't feel heard or didn't understand their thinking.

    Other times, I just had to wave the white flag and seek out a second opinion. 

    I'm also hearing that this is sort of on a cycle: he gets a cold or other upper respiratory infection, sort of muddles through, but then it moves into his chest and flares his asthma, despite all his meds. Or he visits a person who owns a dog, and that flares his asthma, despite all his meds. 

    We've had the sick/asthma cycle, and one thing that helped us was a preventive approach — which you may already be doing. Washing hands and helping your kiddo remember not to touch his face will go a long way in helping you avoid this trigger. Also, you can ask his teacher to alert you if any crud is moving through his grade level or his class. 

    Once a week throughout the school year, and more often if there was "crud" going around, I would wipe down "touch" surfaces — door knobs, light switches, cabinet door knobs, remote controls — with a soapy cloth, followed by a sprayed on disinfectant, usually either a weak bleach/water solution (if my own asthma could take that) or a spray bottle of 70% isopropyl alcohol.  We also saw significant reduction in colds when we got a fridge that had ice and water through the door.

    If you don't have that, then I would recommend a scoop for the ice pan and banning anyone with a cold from getting ice (or ANYTHING) from the freezer. 

    Does your son have a 504 plan at school for his asthma? One thing you can ask for (they may not give you, but you can ask) is that kids use actual soap and water to wash their hands before they eat. Hand sanitizer is better than nothing in a pinch, but soap and water beats it (no pun intended) hands down. 

    You asked about an anti-inflammatory diet. Before I radically changed a diet, I would talk with his doctors and/or a registered dietician. But you can't go wrong with a good, solid healthy diet that's rich in vegetables and low in processed foods — I don't think any doctor would argue with that. You can ease into the veggies a little at the time, and even if he doesn't eat it, just let it hang out on his plate. Eventually he will see you eating it and equate it with the thing that grown-ups do — eat healthy foods. 

  • Kathy P

    Dealing with animal dander can be frustrating. I'm really allergic to cats and being in home with cats will quickly trigger an asthma attach for me. @Shea may have some ideas for you on how to navigate the dog allergy.

    The asthma triggered by illness can be a nasty cycle. Until I had my allergies and asthma well managed, I used to wind up in that spiral every fall/winter. There is a that happens as kids go back to school and start passing germs around again. Good prevention protocols are key to avoiding getting sick. But sometimes it's just inevitable.

    Has his asthma ever been well controlled? 

  • GigiGibson

    Hi Pam, welcome! I am so sorry you have had to make our humble acquaintance. I am a lifelong allergy sufferer with adult onset asthma (this year and I'm 47). I understand living in the yellow and red. According to my app I have a Green Day maybe every other month. I want to just put this out here, has he been tested for CF? If not you should seriously consider it. We have a member in his 20's that JUST. Found out he has it. 

    My son had allergies and asthma as a 2 year old, it was tough. I set up a "sleeping room" with barebones bed, slipcovered everything and had his play area and toys in another room. Stuffed animals spent one night a week in the freezer. I think your son is beyond that and perhaps, like me, he needs a second controller med and nebs a few times a day if he's not already on them. It's keeping me level enough to work and stay out of the ER. 

    Let me know if any of this helps

  • Pam

    Thanks everyone! He has NOT been tested for CF, but it has been mentioned in his last couple of visits. His doctors say he does not fit the profile in any other way (healthy otherwise, no family history). 

    I have recently thought about researching different bedding. He does not really sleep with stuffed animals (although he sometimes does) – that's a good idea to put them in the freezer periodically.  

    The first PFT I did not think he was flared, but he was. He was flared for the second one, too, so I guess we don't really have good data. But he has never been controlled since he was 2. We just got Decadron on Friday (dose Friday and Saturday) and he was wheezy this AM. Ugh!! Still praying he grows out of it!

  • K8sMom2002

    Do you have a peak flow meter that you use at home? Since he's a tough little guy who doesn't slow down, having those readings on a daily basis might help. It might help you predict when things tend to go south.

    Another thing that might help would be monitoring his O2 sats with a pulse oximeter when he has an asthma attack. I know my doctors were very relieved when my O2 sats stayed in a "safe range" despite me being in the middle of a severe asthma attack. 

    And on the CF — it might be worth it to pick up that rock and make sure nothing is under it. My DD had a rare bleeding disorder that doesn't look like the "typical" bleeding disorder, and even without a family history, you can wind up with genetic mutations by sheer chance. 

    I expect you'll be able to put that rock back down pretty quickly, but it's helpful to cross it off once and for all. 

    And yes, there's always the hope that he will grow out of it!

  • Kathy P

    Our doc decided to do a CF test when my ds was a toddler and having anarray of issues. It was more to rule it out so we didn't have to keepcoming back to it later.

  • Mandy

    Welocme Pam!

    I agree with Kathy and Cynthia on asking the Doc's before changing your kiddos diet. I am the one with severe asthma in my house and I can only imagine the fears and frustrations if it were one of my children. My heart goes out to you Pam. It's not easy. We modified the house-ripped out carpets, got the furnace and ducts cleaned, and had the house cleaned from top to bottom. But, some how those pesky dust bunnies keep returning We changed the cleaners and toiletries to unscented as I can't tolerate smells. I have changed my diet and activities. And while it has been a learning adventure, I'm glad I've tried even when things didn't work out. I can say for me diet changes have helped. It hasn't impacted my medications but has helped overall with energy. Restricting activities has gotten easier for me but it's still a work in progress for us as a family. I think it must be hard for them and hard on my husband. But at the end of the day, if restricting or changing things now will make for a better tomorrow it's worth it. 

  • Jen

    Hi Pam,

    Welcome and hugs~ I am sure this is all very frustrating for you and your son.  I hope you can get on a better treatment plan soon.  One thought I had was that maybe he's not getting enough of his meds when he uses the inhalers.  Here is an article about .  Does your son use a spacer or chamber with his inhalers?

     

  • Pam

    Thank you for asking!!  The last few days have been good! Yay!! He does use a spacer, and has his technique checked by the pediatric respiratory therapist each time we see his lung doc – and he's good. 

  • Jen

    Ok.  Glad you can tick off that box.  Have the doctors ever had him use a nebulizer?  

  • Pam

    Oh yes …. I have him use the nebulizer when he has anything more than a mild wheeze as I think the nebs work better. 

  • K8sMom2002

    I'm so glad he's doing better — and I :heart: doctors and office staff who help make sure that our kiddos are using their inhalers correctly. 

    What do you think has been the difference in his recent improvement? Is it something that you could put your finger on?

  • Shea

    My 4 year old has severe allergy to cat and dog dander, and I have a disease called Churg-Strauss Syndrome that I was diagnosed with after taking Singulair and attempting to live with dogs for 2 years prior to and during pregnancy. After being diagnosed with CSS, my doctors informed me that this previously rare severe allergic disease is becoming more common and is becoming connected with singulair use. Causality has not been proven yet but a correlation has been made, and my new doctors say it may not be a good medication. There is a blood test marker in a regular CBC called Eosinophils for many chronic allergic diseases. Singulair seems to work great for a lot of symptoms, but eosinophils are an inflammatory blood cell it doesnt seem to control, that when they get high, can do a lot of damage. I suggest keeping an  extra eye on this result, check the blood tests and see if it is flagged high, as my old doctors had never informed me these were high and the result was me having the cells surround my heart and give me a heart attack at age 28 and that is when I was diagnnosed with CSS (shortly after the birth of my son, aog now I can be anaphlactic to cats, severely allergic to dogs, and my son  has severe cat dog allergies asvwell as peanuts and soy).

    My son and I do not go into peoples houses who own cats or dogs. We entertain guests who own cats and dogs either outside in our yard or in a florida room with a separate a/c and air purifier. Dander is sticky with cats, and very airborne with dogs, and secondhand exposure can trigger asthma and allergies. Other than that, we meet people at events at the community center, or public places that are allergy and asthma-friendly. 

    Journalling is great for learning triggers. WebMD Allergy is a great smart phone app thats free and makes it easy.

    My son and I are allergic to nuts, among other things, so we carry a bag with us everywhere with up to date epipen, benadryl, allergy list, and emergency contact list, and I inform all caretakers of his allergies. 

    We try to eat gluten-free when available, organic especially for things with thin skin like grapes and apples, we stay away from sulfites such as are in dried fruits and can set me anaphlactic, and we wash sheets in hot water weekly, vacuum with hepa vac has been helpful for skin allergies. Chlorine can be a trigger, so we dont swim in pools often, and I have a chlorine filter on my shower hgea. We use green cleaning products. He doesnt have to take any meds besides occasionally benadryl. I use breathing treatments regularly, and because my asthma is severe, uncontrolled, and related to high eosinophils, my insurance covers Nucala, a new medication injected once a month that has shown to be helpful in getting off prednisone. So thats our experience. Sunbutter us a great alternative to peanutbutter and has been a lifesavor with my picky eater food allergic 4 year old.

  • Pam

    Hi there. Sorry it has taken me a while to post. Just been busy with work, kiddo school and homework, the usual. My son has been doing ok – the usual green/yellow land but ok. Thanks for asking. 

  • K8sMom2002

    on seeing "green" days, and I'm with Jen — may you see more in the future!  What do you think is the reason for the improvement and for the fact that your kiddo's not been moving from yellow to red?

  • Pam

    Hi, yes we are still green and yellow. The only thing I can think is maybe the change in weather — settling down of environmental allergies. Hope everyone has a great Thanksgiving!!

  • Kathy P

    That's great Pam! Hope it stays that way. Do you know what his triggers are?

    Hope you guys have a nice Thanksgiving as well.

  • K8sMom2002

    @Pam, how are those green and yellow days holding up? Has the cold weather made a difference in your little one's asthma?

  • Pam

    Hi there. No, no more green. Ugh!! I'm taking him in again this afternoon for, most likely, Prednisone again. Bad night last night. I think the cold weather makes it worse!!  I'm also checking with his teacher to make sure she is not bringing her dog in class off hours. So frustrating!

  • Jen

    Sorry he's having a tough time again.  Keep us posted on the appointment.  Hugs to you both~

  • K8sMom2002

    Pam, for both you and your little one. I hope the doctor can give you some answers and a good plan going forward. Do let us know what you find out today!

  • Kathy P

    How did the appointment go? Hopefully you can get things back on track quickly.

    Is he allergic to dogs? Have you seen issues with the dog in class before?

    Hope it's a better night.

  • Pam

    He amazingly sounded good at his appointment – lol!  But we all know how quickly that changes. His pediatrician really is great; she wants to try and ride it out before doing oral steroids AGAIN. I did get a prescription in case he does not get better in a few more days. She thinks he's just fighting a cold – dad has had a sinus infection the last 2 weeks. We'll see!!

    i have not seen the teacher's dog in class. We discussed his allergies in our meet-and-greet in the summer, so she is aware and said she would not bring her. I have to believe that, but I also know what people say and what they do are often completely different. 

  • K8sMom2002

    I'm glad the doctor doesn't think it's that serious and that she gave you a prescription in case it doesn't improve.  

    How could you follow up with the teacher to remind her just in case? Has your son been out of school with this latest issue? Could you send her a note explaining why he has been absent and mentioning his allergies and asthma again? Without mentioning the dog at all?

    Sometimes that's enough to jog a person's mind about something that may have slipped. 

  • Jen

    Hope he gets better and doesn't need the steroids, but glad you have them.

  • Mandy

    Sending good vibes on the little one getting over this without the steroids!

  • Pam

    Hi there. He's had persistent symptoms now since Christmas. We (his doc and I) thought it was him trying to fight off a cold (dad was sick), but I don't think that is the case anymore. I'm going to pick up steroid tomorrow. ��  This time around symptoms were more mild but just not going away, and started interrupting sleep (hence why I am replying at 3:22 AM ��).  Thanks for checking in. 

  • K8sMom2002

    I well know that middle of the night wake-up call! Asthma can get worse at night. What changes did your doctor make in your kiddo's ?

  • Kathy P

    Hugs – poor guy That's a long time to be feeling cruddy.

    Hope the steroids kick things quickly with minimal side effects. Has the doc considered antibiotics in case there is a lingering bacterial infection?

  • K8sMom2002

    How are things today? I hope you and he both got some sleep! The problem of course with steroids is that while they make breathing easier, sometimes they kick off a monster case of insomnia.

  • Jen

    Sorry to hear he's been sick.  I know there was a wicked upper respiratory thing going around right around holiday time.  My mom ended up getting steroids to try to kick it.  I hope the rest of the week is more restful for you both.

  • Pam

    Soooo, after continued issues, 2 doses of decadron, we were back at the doctor today. Got a loooong prednisone taper and ….. antibiotics for a walking pneumonia.  ������  thank you for all your thoughts. Hopefully, we will be on the mend again this time!!  Has anyone heard anything about this new device called the "wing"? 

  • Kathy P

    Oh no on walking pneumonia! Hopefully the meds will have him on the mend quickly! I had to a longer pred taper the last time I couldn't kick something.I flagged down someone about the Wing device.

  • K8sMom2002

    Yikes on the pneumonia — that's no fun for grown-ups, much less small fry! How are you guys doing today?

    Did your doctor suggest Wing? I've heard of it, and it really looks interesting … 

  • Allison

    Hi Pam! 

    Our AAFA blog posted about the .

    Separately, and privately, I ordered the device when it became available. My 13 year old has asthma and food allergies – was diagnosed with asthma at 1. He has a terrible time remembering to take his Qvar regularly (two weekends a month he is with his dad). I read through this thread, and some of his patterns are similar to your kiddo's – about 2 weeks having a cold or respiratory infection, he will be hit with an asthma flare – although for the past year or two that seems to be slightly better.

    I thought maybe this would be helpful to warn about that, and particularly the med reminders. The fact that he wanted a better smartphone made for a good bribe so I gave him my old one and I upgraded.

    My opinion on this as a mom is still out. I have to take it to his next pulmo visit (his pulmonologist knew of it and supported us getting it, I checked with her first) and / or see if there is a support number I can call. One night it suddenly switched from green to red (it was green in the morning and red at night), and he said he felt fine – however, he was coughing a little bit, and sounded a bit funny. I gave him his rescue inhaler, and there was no change. He said he felt no difference. So I was super cautious and went to urgent care, and they said he was fine except for a whole lot of post nasal drip running down his throat.

    So is the device super sensitive and sensed the crud and was giving a warning immediately? I don't know. The urgent care nurse called it "the coolest thing I have ever seen." (I brought it with me to explain why I was there.)

    It is easy to use and portable. No batteries and no charging. 

    I hope this was helpful. Hope your guy feels better. I had a bit of pneumonia once, before I had a kid, as a young adult, and it was not a good week!