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I’m new…and overwhelmed :(

I am new to this group but not asthma really. I was diagnosed with asthma as a kid it was usually brought on by sickness and sports. But as I got older it wasn't as much of a problem. We never really talked about or researched anything about it I just used my inhaler when I needed it and that was life.

Cut to my son. He has had issues breathing since birth. I was told at the hospital it was from the csection my other 3 kids were also cesarean and never had issues but I trusted them and let it go…then the wheezing continued…days…weeks…I mentioned it at every doctor's appointment and they never really said anything even though I specifically asked about asthma multiple times saying his breathing wasn't right. At 4 months old he got RSV. Took him to the doctor and his pulse ox was under 80%. They gave him 2 breathing treatment in the office and sent us to the picu. They gave him 2 more treatments and sent him home with albuterol. Many more ups and downs later and lots of appointments he was diagnosed with asthma they put him on prednisone to get him under control and Flovent twice a day and albuterol as needed. 

The doctor said he has given us more trouble then most especially for his age but he is under control now and she is happy with our plan. We haven't went to a pulmonary specialist or a allergist yet. He was diagnosed at 4 months and is now 13 months. 

Tonight he had his first real bad asthma attack since being diagnosed. We have had wheezing we have had flare ups (especially since crying and being upset is a trigger and he is one and that's how he communicates) but nothing like this. It scared me and him and it took a lot of energy out of him. 

I'm not sure there is a real question here…mostly to vent to someone who will understand the panic that you have but can't show and the feeling of total aloneness and helplessness even though your not alone. 

Am I doing it wrong? Did I not get the welcome packet full of information on how to coupe with your baby struggling to breath? 

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  • Melanie Carver

    Hi @Kyler's Mom,

    I wanted to send you a welcome and a virtual hug. I also was diagnosed with asthma as a child and still have it to this day…but it didn't prepare me for the horror/panic of seeing my child not being able to breathe. 

    I'm sorry to hear of the recent asthma episode and I hope that treatments have worked and his breathing is improving and that you'll both be able to get some sleep tonight. 

    Tomorrow, or in a few days, when you are ready – we don't have the welcome packet you are asking for, but we can help in other ways. 

    • Keep reaching out here! We understand your worries and your fatigue. Sometimes just having other people who listen and understand can be a relief.
    • We do have various asthma education programs that are designed to help you recognize symptoms earlier, prevent asthma flares, understand treatment options, and how to communicate with your care providers. 
      • We just recently launched a new free online course for adults with asthma:  It has videos, checklists and more – and you can pause/stop/resume at your convenience.  Although this class is geared for adults with asthma, it does have information that applies to everyone with asthma, too. It was based on a kids' program called Wee Breathers that we developed many years ago (that program is only available as a large PDF at the moment, so I recommend signing up for the interactive course for adults instead).
      • For information specific to kids, here is an article about asthma in infants:  
    • We have other options as well, so let us know if you are interested in different options. 

    Please keep us updated on how you and your son are doing. Don't hesitate to seek immediate medical care if he shows any red danger signs like these:

    • Fast breathing
    • Working harder to breathe (nostrils flaring, skin is sucking in around and between ribs or above the sternum, or exaggerated belly movement)
    • Panting with normal activities such as playing
    • Wheezing (a whistling sound)
    • Persistent coughing
    • Difficulty sucking or eating
    • Tiredness, not interested in normal or favorite activities
    • Very pale or blue coloring in face, lips and/or fingernails

    Thinking of you tonight!

  • Shea

    Kyler's mom, I am glad you found the group– asthma and allergic diseases ARE so difficult to cope with alone, and I love hearing and sharing about both struggles and solutions on this forum (especially on daily roll call where we have such a wonderful group– some with young kids who also have asthma and/or allergies.)

    I get frustrated hearing about your experience with doctors not being on their A-game with listening to you when you said he is not breathing right and waiting so long to identify his asthma– it can be a struggle to find a doctor you trust and like, get the right specialists, identify the triggers, and make a good solid comforting asthma action plan (I am hoping others will chime in about the specifics of an asthma action plan but it is basically a plan that specifies what to do when your asthma is well controlled and tgen what to do when it falls into different zones of difficulty breathing– like when to go get a steroid burst and taper, when to increase nebulizers, and what to do daily when you are feeling generally well.)

    I put a huge focus myself on triggers and trying to keep my home a "sanctuary"… I have asthma as past of a greater chronic allergic disease, so seeing an allergist and getting an accurate test, like a skin prick test, was helpful for me although for such a young child it might take a while for a test to be good and accurate, so journalling and using typical allergen avoidance practices and paying attention to things that are common triggers might be good. My son and I are both very allergic to cat and dog dander and live in a home with no furry or feathery pets. We also have dust allergies so I use a lot of the tips about weekly washing of bedding and encasements in hot water, HEPA purifiers and vacuums, etc. 

    I hope with time and more information through experience and education things will get easier and more manageable, I can understand how scary it is to see your child struggle and want to keep him safe and comfortable.

  • Kyler's Mom

    I am all for any information anyone has! We have a Asthma Action Plan I have it on our fridge so everyone can see it. We use flovent (2 puffs) twice a day. Ventolin as a rescue to use as needed. All used with a spacer. We have prednisone for when he is sick or if we are into the emergency plan. We also have a oral allergy medication and a cream for eczema. 

    He has been well controlled (with the occasional sickness and attack from getting upset) until the last week or so…I'm not sure what is causing the flare up. It could be the crazy weather and the horrible humidity (humidity and pollen seem to be two of his big ones) we have had or the fact he is trying to walk and is a lot more active then he used to be. 

    We use our pediatrician to do all his asthma stuff right now. They said we could just stick with them as long as he stayed controlled or I could choose to see a pulmonologist and a allergist. She told me it was possible since he has had such a rough go as he gets into toddlerhood and is a lot more active he may become more uncontrolled. 

    She also said when he goes into a pulmonologist at a young age they would put him through a cystic fibrosis test that he was already tested for and came back negative but the way they test it is hard on them and she would hold off on the pulmonologist until he is past that age.

  • K8sMom2002

    Welcome, Kyler's Mom! It is so tough with little ones! 

    It's good that you're thinking about an allergist or a pulmonologist. Since pollen seems to be a trigger, maybe check with an allergist? 

    Also, in my experience, specialists don't like to re-do tests that have already been done somewhere else, especially if the answers are very clear. As long as you have test results and visit notes, that might be enough. And just because they WANT to test him again for cystic fibrosis doesn't mean you HAVE to have him tested right now for CF.

    You're not alone — none of us got the "welcome to asthma" packet, either, so I know exactly how you feel. But this group of friends is a terrific support and we are here for you!

  • Shea

    Kyler's mom, that is awesome that you have an action plan, have it on the fridge, have the meds, and have an idea of triggers. Those are the big things and you have got it down!

    My personal opinion is that I like a specialist and that is because they usually keep more up-to-date and have more in-depth knowledge on the types and new treatments for asthma, AND mostly because I personally had bad experiences in the past with primary care doctors who missed key things in labs and– if they had referred me and I had seen a specialist sooner, I could have avoided a world of trouble (I had extremely high allergic blood cells called eosinophils that caused permanent damage to my organs, and are markers for a rare allergic disease that with correct treatment can be managed but can be deadly if not treated right, and for me I was diagnosed by a pulmonologist at the hospital after a bad attack that actually ended up being a heart attack, and my primary care doctor was just clueless about the disease and treatment). 

    So, I am a huge proponent of seeing a specialist , but also, with that said– you are the one in charge and can say no to testing and especially retesting that is upsetting to your child. My son did not like the skin prick test so we don't do the retesting for everything every so and so years– I am glad I had him tested twice for certain things– because I had family members (his father who I am not with) that wanted to put him around dogs and cats even though he is allergic and I had to get tests and doctors notes to keep him protected, but I only do tests I feel really bring a benefit,  especially if it is a test that is tough on him and he does not like, but when he is ready or if we need one because we suspect something has changed, then we will discuss it with the doctor and his doctor was understanding and communicates with us so that is an important quality in a specialist.  

    I think you have been really on top of things, I like how you keep the plan on the fridge–I have one on the fridge to, and another in the medicine bag I carry with us/travels with him. 

  • Melissa G

    Hi Kyler's Mom! Welcome to AAFA! So glad that you found us! 

    This time of year can be really rough with people with allergies/asthma! Have you seen our  I wonder if fall allergies could be making things worse?

  • Kyler's Mom

    It is very possible we are in Ohio so it's been a rough couple weeks here with up and down temps humidity and pollen…especially on the days where we need coats to go to my daughter's bus stop then air on by noon then in fleece pjs at night. This is the craziest part of the year!

  • Melissa G

    I agree! We have had our air conditioning on, and probably by Saturday, we will need to have our heat on. This weather is crazy!

  • Debbie Alves

    Hi, Kyler's Mom! I have had severe allergies and asthma since birth (and was one of the kids in the '50s they didn't expect to survive.  I'm 62.  So hang in there

    I really think you should take him to get evaluated by a pediatric allergist or pulmonologist.  Is there a Children's Hospital where you live?  A large medical school?  Those are frequently going to be where those specialists are affiliated.  By all means, take copies of your son's charts and all test results, from birth.  Asking for a second opinion (or third) is not a slap at his pediatrician, it's a recognition that no one can know everything, and what we are learning about asthma and allergies is improving exponentially.  Remember, if you are ever faced with it, that taking him to the Children's Hospital ER will automatically get him in to see a specialist more quickly than just cold-calling for an appointment.

    And here's a major pat-on-the-back as Kyler's mom, for being so on top of this.  The reason I survived all the close calls?  My mother, who was (and still is) fierce, and who would not give up (this was long before even rescue inhalers and they didn't give infants and children steroids back then). YOU are Kyler's best advocate, and his gladiator — do not let any doctor or nurse make you unsure of what you know, or less willing to demand what he needs, or you need to care for him.  

    We're all here, so let us know how he's doing (and you and the sibs).  We'll be thinking of you!

  • Tiffany F.

    With a trip to PICU, I'd see a pulmonolgist.   Our daughter was life-flighted in 2017 and stayed in PICU at Children's Hospital.  Children's was MUCH more detailed and helpful than our general pediatrician.  They are a lot more in-depth (had her allergy tested, etc) and much better than just a general ped.  Since asthma can be very life threatening, I wouldn't mess with just your pediatrician but that's just my 2 cents after our ordeal.   

    Don't worry, your child sounds like the average asthmatic child.  Nothing out of the ordinary for a LO with asthma, so you aren't experiencing anything abnormal.  Also why it's important to see a pulm… IMO with a comment like that (your child has given you a harder time than most), it doesn't sound like that ped has dealt much with asthma which would make me nervous.    Trust your gut because our ped sent our daughter HOME that morning…later that day she was life-flighted in respiratory failure!  I don't trust anyone but experienced pulms with this kind of condition!

    Debbie was right, you are your child's biggest advocate.  I have taken my child to the doctor just to get checked out many times when others thought I was over-reacting.  Not that you have to be paranoid by any means, but a moms instinct is irreplaceable.  The day of our incident, both our pediatrician and my husband didn't realize how bad the situation is.  I instantly knew something wasn't right and bypassed all others – not a moment too soon.   I really believe God gave moms a 6th sense about our kids.   If you feel your child needs more care and support, by all means.

    I have actually started an asthma moms support group locally as well… it's nice to have the support of others!  It helps with that overwhelm to be surrounded by those who have walked before you and come out on the other side, and those in the trenches with you too.

  • Tiffany F.

    PS.  You are not alone with being really overwhelmed by it.   It took me almost 9 months working with a therapist to be able to overcome the crippling PTSD that I experienced after my daughters life-flight experience.  There really is nothing more horrifying than being that helpless when it comes to your kids.  Honestly, the biggest thing that helped me was not hearing it from anyone else but the actual experience of seeing the medicine work, and I did that in my nephew having an asthma attack himself.   He had a decently severe attack, we gave him the rescue inhaler and I experienced seeing the medicine work almost immediately. He was back to playing happily a short while later. Since then I have made leaps and bounds.  The support is an incredible resource though.  This site is wonderful, as well as anything locally you can find or establish.