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My 16mth old w severe asthma

Hi, first time on here. We have been struggling with my daughters symptoms for at least 11 months. It started when she was born to full term and a couple days later I noticed she had a funny noise when she was breathing- like a little pug. The dr said it was because she was a big baby and nothing to worry about. Shortly after that, she started having these breathing episodes that came out of nowhere- sometimes congestion a and others with no congestion but struggling to breathe. There have been times where she has become unresponsive or turned blue around her lips, other times she becomes lifeless, sometimes fevers, but she always looks or seems sick, there have been times where her 02 dips to 82-84. For months Drs would say it was RSV, brochiolitis, uri but she would never get better. She has been admitted countless times and she gets more and more steroids there. We switched hospitals and we started seeing a lot of different specialists : ENT,ID,pulm,cardio and nuero, she has had ct, bronchoscopy, MRI on brain , EEG,ekg, sleep study and labs drawn. Her blood came back with deficiencies IGG 2 and 4, and Anemia ( but iron level is normal) every other test has come back normal except for her ct with a collapsed mucous plug in right lung. She is on daily: Flovent (spacer) Atrovent/albuterol (duoneb).emergency- oral prednisone.  Her episodes of breathing occur every 2-4 weeks and this has actually been the longest thus far (5 weeks) in between those episodes she is never 100%, last week she had Bronchitis. The Drs thought there was an underlying issue along with asthma, but the only test that came back with evidence was ct.

There are only two symptoms that remain the same every time: she does not sleep the night before and her breathing. Every other symptom changes every time.

 I'm just at a loss for words with how I feel, my heart breaks for her. I started a page for her in hopes that another family has been through this and can offer us guidance. I feel like she's on so much medication and more than not she looks awful( extremely pale with dark undereye bags) . Is this what extreme asthma is like? Are their other issues that go along with asthma ( autoimmune diseases?) 

I just don't feel 100% sold that all this is from asthma. What else can we do? why does she keep getting these episodes when she is on all these preventative meds?

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  • Allison

    Hi! After watching I can totally understand why you are at a loss for words – I'm so sorry! I can tell you that my son's asthma was worse when he was that little, and I remember sitting in the doctor's office with him breathing like that, so I know how you feel.

    I have a few questions – when you say you switched hospitals, did you switch to a children's hospital? Has she only ever been on Flovent? When you say "CT" do you mean CAT scan?

    We are not medical professionals here, but we can help you try to puzzle this out, know what questions to ask and send virtual hugs. 

    Did your doctor give you an asthma action plan and ?

    Did they also give you a nebulizer, or do you only use the spacer? 

    Is she 11 months old?

    I could not tell if that video was taken in a hospital or not….

     

  • Allison

    We have some resources about using nebulizers and spacers –

    If you look at the cards, you'll see that nebs are recommended for babies like your little girl, and spacers for older kids (and I see now she is 16 mos not 11 mos, I am typing too fast).

  • K8sMom2002

    Kaco, you're definitely in a tough situation — But you're not alone. We're here for you. 

    Allison has given you lots of good resources. I'll echo those and add a couple of other suggestions.

    I would definitely recommend a children's hospital — they see the tough cases, the mystery cases. 

    It sounds like you're trying to keep track of her symptoms, which is good, and you're seeing patterns of what happens — the no sleep before an exacerbation. If you're not already, I would also recommend keeping a detailed journal — when she has something like this, I would write down everything I could think about that happened the hours and days leading up to it.

    Are there other issues going on — gastrointestinal issues? Hives or other skin issues? Have any cultures grown out of any of her sputum samples? Have they also considered fungal infections?

    You said that her IgG had been tested — what about testing for food allergies and/or environmental allergies?

    You mentioned that she was anemic — is this usual for her? What exactly was the abnormal part if it wasn't iron that low? 

    Have genetic disorders such as cystic fibrosis or Primary Ciliary Dyskinesia been ruled out? I'm assuming that they probably have, but it's something to consider, especially if either side of the family has had respiratory issues?

    Sorry to throw so much at you … just thinking off the top of my head here. 

    My own DD wound up with a mystery disorder that we could not figure out, and it seemed for a long time that her doctors couldn't, either. It turned out to be a rare bleeding disorder that affects one in a million — literally ONE in a million people. So I know how frustrating it is to know something is wrong and be faced with tests that say, "Within normal limits."

    Like I said, we're definitely here for you.

  • Kaco
    Allison posted:

    Hi! After watching I can totally understand why you are at a loss for words – I'm so sorry! I can tell you that my son's asthma was worse when he was that little, and I remember sitting in the doctor's office with him breathing like that, so I know how you feel.

    I have a few questions – when you say you switched hospitals, did you switch to a children's hospital? Has she only ever been on Flovent? When you say "CT" do you mean CAT scan?

    We are not medical professionals here, but we can help you try to puzzle this out, know what questions to ask and send virtual hugs. 

    Did your doctor give you an asthma action plan and ?

    Did they also give you a nebulizer, or do you only use the spacer? 

    Is she 11 months old?

    I could not tell if that video was taken in a hospital or not….

     

    Thank you for getting back to me! She uses a neb for albuterol/Atrovent and a spacer for Flovent. Her plan for when she has an episode is for us to call on call pulm give her oral prednisone and bring her into ER. They will admit her to monitor her.

  • Allison

    You may want to ask about doing a controller med in the nebulizer instead of the spacer. It may be that the Flovent, using the spacer, is not really getting into her lungs properly to do its job – I was just listening to an audio clip on this website the other day – it was a doctor – scroll down to #5. He talks about using nebs in smaller children with a mask.

    When my son was that little we did Pulmicort in a nebulizer. Now he is on QVAR. 

    Also, when he is sick, we change our strategy. I might switch back to the neb, even though he is almost 13, or I might have him do alubuterol first, wait 10 minutes, and then do the controller – this is all based on what our pulmo has told us (like I mentioned before I'm not a doc or nurse).

  • Allison

    If your daughter has been on the same med this whole time with no improvement, I'd speak with the doctors about switching to a liquid med in the nebulizer, and ask about doing the albuterol first, before the controller med. It may take them a while to get used to the face mask, so TV or a tablet is your friend there…

    Also, I don't know anything about so I went to the website, and I see it is approved by the FDA for people 4 and up. So it is probably worth a call to the doc for a new plan of attack.

    I don't know anything about the blisters, sorry! Have you seen a dermatologist? 

    Has she been tested for environmental allergies or shown signs of reactions to foods? 

    Does she also have eczema?

  • K8sMom2002

    I'm not a doctor, but the low levels on some of those are what our doctors have referred to as "low normals" — close enough to the reference range that they don't seem to be concerned about them.

    However, if it's a trend, then that's something to remind your doctors about. And sometimes that "low normal" or "high normal" is the clue you need. Two "low normals" are what helped unlock our mystery for DD.

    I have no clue on the blisters unless you're seeing them on other places OR they are happening within 20 minutes of eating a food or taking a drug. 

    I'm glad you have a solid plan on what to do when she has an episode/exacerbation.

    Have you asked her doctors about ways to boost her immune system to help overcome the effects of the steroids? 

    Allison's recommendations are what I would recommend as well … and know that we are here. 

    How's your little one doing today?

  • K8sMom2002

    Another thing — depending on where you live, you may want to think about traveling to hospitals that are known for their work with tough respiratory cases. 

    Out west,  and are known for their work with respiratory patients. On the east coast, has a great reputation for solving mysteries — our pedi was about to send us there when we finally found a doctor here in Georgia who could solve our mystery case.

    I know you may wonder at traveling out of state or a long way away, but sometimes the main problem is finding the diagnosis. Once you do, and you get a plan in place, your local doctors can help carry that plan out, and you only have to see the original doctor once a year or so. 

  • Mandy

    My heart goes out to you Kaco! I am the asthmatic in our house and I can only imagine the heart ache and frustration of having a sick little peanut. The other ladies have given you some excellent recommendations. Hugs and if your Mommy Tummy is telling you it might be something else as well…keep searching! That tummy is often right.

  • GigiGibson

    Kaco, welcome to our support community. I am so sorry your daughter and family have had such a scary and frustrating time. It's so hard to take care of someone who can't speak up about what's going on. I know you would take it from her in a minute.

    I also know you probably feel insane pressure from within to find the solution or at least answers, the amount of pressure others put on you to find the right doctor or test can be even worse. My biggest headache was taking everything everyone told me to do and not getting offended or angry. I don't know if this has been your experience but it was a tough issue for me. They all mean well but I took it as "I'm not yelling for answers loud enough". I have gone for second opinions and told a senior pulmonologist to get out of my room and not talk to me. Know what I found out? The younger doc doing a fellowship agreed with me and we moved forward with his plan for me. How do you feel about her doctors? Search your heart and gut and decide if he or she has done all they can. If you don't feel like they have then begin researching who can offer her more or different testing. Has she been seen by an immunologist/infectious disease specialist that offered their input after specialized testing? 

    Once (or if she has already had) all rocks have been looked under for weird and major diseases you may find her with just bad asthma. Let me now back up and say it's not "just"  bad asthma. It's a big deal, a lifelong ordeal for some. My son had allergic and exercise induced asthma when he was little and "outgrew" it by adulthood. He was on all sorts of inhalers and sprays from age 3. I on the other hand developed asthma over the last few years but just got diagnosed in March and began having attacks in June and am now very limited by this monster of a disease. What I'm trying to say is it is an evolving and variable thing we deal with. It's not what we see on tv with a few puffs of albuterol then on with the scene. Sure if I'm playing wack-a-mole with symptoms that is the case but when an attack breaks through or jumps on me suddenly it takes me down. Might put me on my butt unable to hold my freakin head up for a day or might put me on the bed a week. I am serious. The inflammatory results can last for weeks after a bad attack that may have just been 30 minutes. Your daughter is a warrior. She is strong and mighty. Just keep encouraging her, teach her to rest and still be engaged with activities that don't exert her  and day by day perhaps she will have a smaller monster to deal with. If it's "just" bad asthma there's a good chance she will get better as her lungs get bigger, airway passages increase in size and she can tell you more about how she feels. I don't know if any of this helps but at least you know you and she are not alone. 

    This group's support has helped me so much. I hope you find the support you need here too. I am here for you. 

    Gigi

  • K8sMom2002

    Gracious, how fortunate and lucky we are to have such wise voices as Allison and Mandy and Gigi … I learn something from them every day!  

    Yes, yes, and yes to what they've said!

  • Jen

    Hi Kaco – Welcome to our asthma community.  Hope things are going ok today.

  • Melanie Carver

    Hi @Kaco, I also wanted to welcome you to AAFA's asthma community. Thank you for sharing your journey with us. 

    I hope today has been a good day for you both.

  • Kaco

    Thank you. Things have been okay. She still sounds like she has a blockage when she sleeps, but again her sleep study came back normal. She did wake up with a rash around her mouth/nose today. Raised red areas. I'm glad with all the support and advice. It feels good to know that I'm not alone. 

  • Kaco
    K8sMom2002 posted:

    Another thing — depending on where you live, you may want to think about traveling to hospitals that are known for their work with tough respiratory cases. 

    Out west,  and are known for their work with respiratory patients. On the east coast, has a great reputation for solving mysteries — our pedi was about to send us there when we finally found a doctor here in Georgia who could solve our mystery case.

    I know you may wonder at traveling out of state or a long way away, but sometimes the main problem is finding the diagnosis. Once you do, and you get a plan in place, your local doctors can help carry that plan out, and you only have to see the original doctor once a year or so. 

    We live in Boston. They said she was tested for allergies, but I feel like I should get more testing.

  • Allison

    Do you mind if I ask where you went in Boston?

    If you don't want to post it, you could send one of us a private message.

  • K8sMom2002

    Glad she's hanging in there! But what about Mom? How are YOU doing?

    It is so frustrating when the tests aren't answering our questions! 

    Are you seeing any kind of reactions from food?  Was that instance of red rash around her mouth connected to something she ate? I ask because in some cases (1 out of every 10) a food allergy test can say you don't have an allergy when you do — you have a reaction to a food even though the tests say you theoretically shouldn't. Here's some info from Kids With Food Allergies about and the .

    I, too, am curious about where you're being seen in Boston. There is Boston Children's Hospital. It has an asthma and allergy program and it also has one of the oldest CF centers in the country. 

    Above all, no matter where you go, you want to be HEARD and you want doctors who are committed to figuring out exactly what is going on. 

  • Kathy P

    Hi @Kaco - how are things today? Is the rash still there? Does she still sound like the blockage is there?

    Watching your first video, I can understand why you are so concerned. Those retractions (the sucking in of her chest) would have me worried to. 

    Gigi has many good points – if everything else has been tested for and ruled out, it might be "just asthma." Many don't realize that asthma can be "that bad" and still be "just asthma."

    What is the biggest thing that you are struggling with right now in dealing with this?

  • Kaco

    Her rash and blisters are still present. She on the other hand for the past few days has been much better. Even when she doesn't have th episodes she always is sick and looks sick. I have a fb page if anyone is interested in checking it out with more videos and updates. I'm doing good today. Thank you:-)

  • K8sMom2002

    I'm glad she's doing better … but on her still being sick and looking sick. I know that has to hurt your heart. What do the doctors say about her rash and her blisters?

  • Kathy P

    Glad she seems to be doing better. 

    When you say "she's sick and looks sick" what do you mean? What symptoms are you seeing that concern you?

    Has she ever been tested for celiac disease? Has anyone biopsied the rash when it's flaring? I'm asking because there is a rash that can be associated with celiac called dermatitis herpetiformis that can have yellow blisters. That may be a rock you've already looked under, but I thought I'd throw it out there just in case.

  • K8sMom2002

    Kaco, a bit worried about you … how are you and your little one doing? Check in when you can!

  • K8sMom2002

    Hi, Kaco … I'm hoping no news is good news, but do check in when you can. How are the rash and the blisters?

  • Jen

    @Kaco - How are things going?  Are you all ready for the holidays?