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New Here – any Asthma parents out there?

Hello everyone – my 2 year old daughter was just diagnosed with asthma this past July after a terrifying acute attack in which she was life-flighted to the nearest Children's hospital with respiratory failure.  As a mother, it was my worst nightmare and I have experienced PTSD symptoms since.  We had no prior knowledge of asthma or any idea she actually had it (only being 2 years old).  This has been a scary journey for us (me in particular!) and I am trying to surround myself with as much knowledge and information as I can going forward to try to make the best decisions possible about her care and in our plan going forward.   I will be honest, as new as this is to us and as scary as our experience was, I do live in fear of this monster called asthma.  I am happy to join the community and hopefully meet some other parents who have been able to successfully control their childs asthma and not live in fear of it.  

This is the first Fall season we've experienced since our diagnosis so if any parents have any advice, I'd love to hear it.   She is on Singulair in AM, Zyrtec in PM and 2 puffs AM and PM of Flovent 44mg.

We've had one flare up (due to a cold) since then and we were able to control it pretty well with her albuterol inhaler.  Still makes me so nervous, I wake up at all hours of the night to check on her still.  

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  • K8sMom2002

    Hugs, hugs, hugs and welcome! I manage asthma for both me and my DD — she's 16 now, but I fully recall those scary toddler years when her asthma was far less controlled. 

    You're smart to be asking about things you can do to help prevent asthma during the fall season. . 

    AAFA has plenty of great resources to help — here's a few:

    •  - even though you have had to manage asthma for a while now, it's still new. Like you said, this is your first fall season, and you'll have at least a year of "firsts."
    • The  - a detailed blueprint of what to do when, which helps me tremendously. 
      • I'd also ask about a "sick plan" so you know exactly what to do in the event that your kiddo starts to come down with a cold or other illness.
    • Info on — a great blog post about how to help reduce the risks

    And then there's us — we're here to vent to and offer shoulders to cry on and tips to help you figure things out, depending on what triggers her asthma. We're so glad you're here!

  • Tiffany F.

    this helps so much, thank you.   I cant express how nice it is to talk with people who have managed this!  I don't know anyone else with a young child who experienced anything like this so its been tough to find support other than the hospital staff.   Thank you again! I am looking through all of these resources in detail. 

  • MadE

    Hi,

    Sorry to here about your little bean. My son too at the age of two had his first Asthma attack was put into ICU,found out at that visit allergic to all antibiotics and singular!  It is so scary,You got this. I would sleep in his room when he was sick.I would sleep sitting up back against the wall and him propped up on my chest. So i know what your feeling. Did your doctor give you an asthma plan-follow it. Any food allergies? My sons asthma is worst in the fall with the leaves falling and higher mold counts and the weather changes hot then cold. I can tell when a storm is coming by his breathing.Colds virus will automatically flair his asthma. So knowing the triggers helps me avoid hospital trips and a phone call to the dr. And a bottle of orapred is always in the house. Most kids do out grow asthma,mine hasn’t,yet.

  • Jen

    Hi @Tiffany F. and @MadE,

    I'm glad that you found us.  What are some of your biggest challenges or burning questions right now?

  • Tiffany F.

    Hi @MadE its nice to chat with some parents who have also been down this road! 

    @Jen for me: my daughter goes to daycare.  I have struggled with the idea of pulling her out, even quitting my job/career.  Her doctor feels that may be a rash decision and has stated that she may turn the corner at 3 and not get sick as much, her immunity may hit a strong point.  She said she will either experience it now, or in 2 years when she goes to Kindergarten either way its coming and may as well build up immunity now.  I am not sure how that all works but trying to trust her doctor there. In the meantime, we are trying to prepare for illness this winter.  I live in fear of every cough and runny nose now (sounds a little crazy, but I had some ptsd symptoms after her attack and I am still learning how to both manage her condition and my fear of it!) now and I am trying to learn to decipher what is OK and what is NOT OK.  I am still unsure.  We went to Children's Hospital Of Pgh (CHP – we are told, one of the best) and I still left unsure and feeling afraid of sickness.  

    Also getting mixed messages from her pediatrician vs pulmonogist at CHP.  For instance, pediatrician told us when she has cold symptoms she is OK to take albuterol daily as apart of treatment at bedtime and as needed.  When she is really bad, every 4 hours routinely when showing symptoms.   I asked CHP and the one Dr looked at me like I had 3 eyeballs and said albuterol is not meant for every 4 hours treatment for colds.  I am so confused on a lot of aspects and just want a solid, safe plan and to hear from other parents who have managed this scary condition.  I hate wishing away my daughters toddlerhood but I feel myself looking so forward to when she can communicate better and let me know what shes is feeling like before she gets bad.  The constant monitoring of her I do myself is running me ragged – when she has a cold im literally up every couple hours at night checking on her, checking the humidity monitor in her room, listening for her breathing distress.  Its driving me a little crazy.

  • MadE

    Me none,Just giving support to Tiffany. That she is not alone and to follower her dr. Action plan and try to figure out some asthma tiggers and let her know that weather changes could be a trigger.

     

    My biggest challenge is dealing with 16 years anxiety and inattentive ADHD but that’s another broad. 

    Thanks for checking with me,Jen

  • K8sMom2002

    @Tiffany F., my pleasure, and I'm glad I could help! It sounds like you could use a little less mixed messages from doctors, and I'm hoping your upcoming pulmo visit will give you that! I would definitely ask that question to a doc who specializes in asthma — either a pulmo or an allergist.

    @MadE, can't those nights can feel sooo long when you're nursing a little one through a very bad asthma flare?

    And it's really interesting that your son's asthma is triggered like mine — if the weather is turning stormy, my lungs don't like it!  I never mentioned it to anyone because I thought I was weird — and then I read AAFA's blog post about .

  • Jen

    Hugs Tiffany~  I think part of managing the fear (my oldest has experienced anaphylaxis due to food allergies, so I can understand your fear to an extent) is gaining knowledge and controlling what you can.  As for which doctor to listen to, personally, I would go with the pulmonologist, as they are the specialist.  If they questioned what the ped told you, I'd come back and ask what you should do differently.

    For yourself and your fear, do you have a therapist you can talk to?  Raising kids is tough.  Add in something "extra" like asthma and it's even more stressful.  It can really help to talk to someone.

  • Jen

    MadE – I hear you. Besides the various allergic conditions my family manages, we also deal with adhd, anxiety and autism/developmental delays.  It is interesting how challenges change with the various things we manage.  I'm glad that you're here to support Tiffany.  We are here whenever you need it too.

  • Pljohns

    Tiffany-I'm fortunate that I"m the only one with asthma to deal with and not my kids.  Our youngest had croup-and I mean SEVERE croup-when he was a baby.  The worst-Dh literally squeeled into the ER front door and I grabbed him and ran for it-they took him from me in respiratory distress-5 days in the hospital with that one.  I kept oral steroids on hand and at the first "bark" cough, he got a dose but after the hospital, I slept on his floor for almost a month until he was finally well.  They kept saying he would outgrow it by age 3, then 4, then 5-finally around 8 he outgrew it and hasn't been sick since.  There is not much more terrifying than having your child go through something like that.  You feel so helpless@!!!

    You have landed in the right place-this is a AMAZING group of people here with a wide range of experiences, suggestions and views and best of all SUPPORT.

    I hope you can get some straight answers from your pulmo and have a good plan in place before the fall season hits fully.  Welcome to the board!!

  • MadE

    Tiffany, I got that too !yes listen to the pulmonologist they are the specialist. You have questions call that pulmonologist and ask make a list, ask ask..

    As far as work, you have to do what you feel is best for you and your family. It’s not easy (((hugs))). I don’t think the docotor wouldn’t tell you the truth. With us the pediatrician and pulmonologist told us don’t put him in day care for the only fact he was anaphylactic to all the antibiotics they tried. It does help to speak to someone about your anxiety and educate yourself read everything you can on asthma knowledge is power.

    The pulmonologist  also told us don’t use the fire place in the house. 

     

    Jen, I always mention crazy trigger that set my son off, because I come to find out it’s not crazy he is just one of those drastic sensitive kids that doctors love to learn from. 

  • Kathy P

    Welcome and hugs Tiffany! It's scary to watch your kids struggle to breathe. What helps for me is keeping things under control as well as I can and acting quickly as soon as I get sick to try to head things off. I can't wait. 

    My daughter still has asthma but it's mainly exercise induced. She does have issues when her allergies are bad. My son mostly outgrew his asthma issues but still has chronic sinus issues that will cause asthma and flare an autoimmune disorder. For him, it's a matter of acting quickly at the first sign of any illness or flare. We can never take a watch and see approach. We need to work with his doctor to start meds right away.

    It's been critical to have that action plan with specific steps to follow so there is no guess work. 

    MadE – teens are definitely their own challenge!

  • Shea

    Welcome to the forum! 

    My main suggestion is allergy tests, and trying to identify triggers. 

    I was diagnosed with a chronic allergic disease called Churg-Strauss Syndrome (it is previously VERY rare but is becoming more common and is being correlated with Singulair–I myself used Singulair for 2 years to try and control my cat and dog dander allergies, and then developed asthma and nearly died from a heart attack from allergic blood cells called eosinophils surrounding my heart and suffocating it–right now there is not enough evidence to prove CAUSATION with Singulair. But I tell you, I will never take it again and I always give this warning to anyone prescribed Singulair. Singulair helped my allergic symptoms to cat and dog dander initially, and so I ended up moving in with my boyfriend at age 26 and living with his cats and dogs. At 28, while pregnant, I started experiencing sever asthma symptoms and started needing inhalers. My primary care doctor was very inept–he missed blood tests, he should never have toldme to take Singulair in order to live with what I was allergic to–he should have said don't live with animals you are allergic to. He should have noted that my CBC results had very high eosinophils. He should have recommended me to a pulmonolgist or immunologist or allergist. He should have done chest xrays. Instead I had a heart attack and nearly died and left my infant orphan. ANyways I recovered and the boyfriend (now-ex)/father of my son refused to find a home for his pets so the baby and I moved out. My son is now 5 and has had severe dander allergies since he was born, has positive skin prick test for that as well as molds and dust mites and some other environmentals. If I had not known this and taken actions like living in a dander-free home, using hepa purifiers in bedrooms, frequently washing sheets and pillow cases in hot water–I swear he would have developed asthma… but so far I have been paying close attention and he is very healthy, just some exzema and stuffy nose stuff that usually subsides after I take extra measures to keep our living space clean. 

    I am so glad I do not have to put him in daycare and am able to stay home with him because there are now published studies that show kids with asthma and allergies who are in classrooms with more cat-owners have more frequent attacks just from the dander carried in!!!

    It is a big deal. My main suggestions are to get an allergist and or immunologist, and talk about how to identify triggers–my son has his kin test at age 3, although I started having him avoid dander after he reacted at a babysitters house once, and since my dander allergies are so severe anyways, it wasn't difficult for me. Classrooms with hard floors and in which keep backpacks separated form the main room and do not have the kids sit on the floors are better options for daycares… also HEPA air purifier in the bedroom is helpful for me with my asthma and my son with his allergies. 

    Let us know how everything goes—it is a learning process dealing with asthma and allergies, and it is individualized, so try to take it step by step!

  • Tiffany F.

    @shea what an awful experience for you – its sad that this issue effects people so profoundly!!  Truly awful!  

    She was allergy tested in August, and tested negative to everything except dog dander (which she flagged low positive for) we had a dog and we did re-home her within the last month.  We don't want to take chances.

    I have three HEPAs in my home actually, I've had them for a few years and I am wondering if that hasn't kept her dog allergy under control while we had a dog.  I just bought a smaller one just for her bedroom after we got home from the hospital as we didn't know her allergies or triggers at that time.  They are Germ Guardian Pure HEPAS with UV.  Our allergist told us we could get rid of the dog, or we could try a number of things and see what happened.  We opted to find her another good home.  She tested fine for cats, surprisingly. 

    Soon she will be mandated to attend Kindergarten so I don't think we can avoid classrooms long-term.  

    Asking about an alternative to singulair is definitley on my list for tomorrows follow up with her pulm.   We haven't liked it either and I haven't read anything good about it.  Thank you for sharing this, it further cements our trying to inquire about an alternative.  

    She does have a pulmonologist and allergist at childrens.   An immunologist is on our list to inquire about tomorrow.  

    Makes me sad – she is only two years old, such a sweet happy girl and on too much meds and too many doctors IMO!  Frustrating as a mom.

  • Tiffany F.

    @Kathy P wow.  How did you discover these triggers, just time?  Thats the scary part, trying to figure out all of these missing pieces.  I am so glad your son has mostly grown out of it.  Can I ask how old your kids are and how old they were when diagnosed?

  • Tiffany F.

    @Pljohns thank you for your reply!  Thanks for sharing your story, I know it can be hard to recount sometimes.  Its daunting to think of it taking until she is 8 to outgrow this….  ugh.  Such a scary thing.  I am glad your son has rounded a corner, I cant imagine the relief to have that all in the past.  I can completely relate to that.  The crazy fear and OCD I experienced in the aftermath I do not wish on anyone.  The strangest things trigger it sometimes to come back. Hoping this goes away in time and with knowing we have control (I hope) of the asthma.  Thanks for your suggestions and help.  Very glad to have found this board.

  • K8sMom2002

    It IS frustrating, I know, Tiffany, and it can make you full of anxiety, especially if it came out of the blue. But you are doing all you can to help her live a full and happy life and I can assure you that kiddos with asthma can thrive. 

    I know you don't deal with food allergies, but Kids with Food Allergies (they're a part of AAFA) has a , and I think it applies to any sort of chronic condition that parents have to watch out for. I know it's helped me — my daughter has asthma and food allergies and a rare bleeding disorder, and if I hadn't had good support from the AAFA community and the KFA (Kids with Food Allergy community), I might have come unglued. 

    It absolutely helps to have people who understand and who have been there and who have gone through it. 

    Time and a good symptom/trigger diary will help you identify triggers. Over time, as you jot down details, you'll be able to see patterns. You'll also see something else — what sort of difference the changes you make have on her asthma.

    Could you make a blank template with headings like:

    • What happened
    • date and time
    • how long did it last
    • temperature and humidity
    • activity before it happened
  • Kathy P

    Both of my kids got diagnosed with asthma when they were toddlers. It was mainly illness and allergy triggers. Both have pretty significant allergic disease including eczema and food allergies which has changed and morphed over the years.

  • Jen

    Tiffany – One thing at a time of course, but reading and preparing is a good way to help keep anxiety in check.  When you're ready, AAFA has some great resources on .  In the meantime, keep reading, asking questions, etc.  

  • CAPuttPutt

    Tiffany-

    Our youngest son sees a pulmonary doctor at a children's speciality hospital for his asthma. He wasn't diagnosed with asthma until he was 3, after being put into ICU for 3 days for complications due to RSV. He's now 4 and just this year alone, we've had pneumonia twice within a 3 month period (late December and then again in February), and the beginnings of pneumonia the following June. When Pre-K began this August, he missed 4 days for a common cold that triggered his asthma (which usually includes croup, low O2 levels, treatment with steroids, and long, long sleepless nights). 

    Generally his asthma flares up when he is sick (colds & such), but at the moment he's been at home with me the last 2 days for just his asthma issues (coughing, rapid "belly-breathing", higher pulse rate, etc.). On a daily basis he takes Flovent 44 – 2 puffs morning and night- and takes singular at night. 

    Our son has only had 3 actual "attacks" where he was wheezing, croupy and gasping for air. Thankfully we were able to control it with his albuterol, until we got to the ER. 

    Asthma can be a monster. But it doesn't have to make you live in fear. Here are some of my tips:

    -get an O2 monitor at home (Amazon or CVS carries them) It'll tel you the O2 levels as well as the pulse rate

    -use a baby monitor for your daughter, this way you can hear her breathing better at night

    -when she's sick, sleep with her & have her propped up on your chest (we do this quite often)

    -don't be afraid to call the dr in the middle of the night 

    -make sure you have plenty of albuterol at home & in your purse 

    -if she tells you "I don't feel good", listen & watch her for a while. Many times young kids can't articulate what's wrong, they just know they don't feel "right"

    -sometimes a hot steamy bathroom helps with croupy cough or air from the freezer

    Our pulmonologist said today that she would probably be upping our Flovent to Flovent 110 vs the Flovent 44 that we currently use. He's only been on singular since June 2nd and at first it seemed to be helping. Now I'm not sure. 

    Keep us posted on your little one & how you're doing with everything You can get through this momma, I have faith in ya.

     

  • Jen

    Hi @CAPuttPutt,

    Welcome to AAFA's support forums.  Thanks for chiming in with those great tips!  I hope your son is feeling better soon!

  • CAPuttPutt

    Thanks @Jen! 

    Pulmonologist ended up going ahead and changing our sons preventative from Flovent 44 to Flovent 110 & put him on steroids (again ��). He improved over the weekend and has been at school all week this week. And he says his lungs "feel good". Yay! �� 

    On a side note, I advise any working parent of a child with asthma to make sure they fill out FMLA paperwork!!! It's a lifesaver! My husband and I both have it for our youngest son. Husband works for UPS & I work at our sons school. Without FMLA, we'd have gotten grief (to put it lightly) over being out with our son. My husband and I take turns being out, but it still adds up quickly when a flare up or complications arise. 

  • Tiffany F.

    Thank you so much @CAPuttPutt and my heart hurt just reading about you having had to go through multiple exacerbations.  Thank you also @Jen

    I wish our first experience with asthma wasn't so frightening and dramatic (life flight, ICU, calling codes at the hospital – it was so traumatizing) I feel like I'd be better able to deal with all of this and not get terrified at the first cough.  

    I copied and saved your advice to a Google Drive doc I've been saving bits and pieces of info on and will refer to.

    Thank you for the FMLA tip, my mom worked in HR and suggested that this summer in case, and I did speak with my employer (family-owned, small business) and they were adamant that it wasn't an issue for me right now.   I am keeping that info in my back pocket though in case it does become necessary. I have been scanning all of my doctors notes and paperwork should I need to refer to them and covering my butt as much as I can.   She is absolute priority, no matter what so I won't hesitate to take off when need be but it's tough to know when its necessary and when she can stay with husband or grandma.  (they aren't as in tune to her symptoms as I have been which makes me a little nervous – hubby is much better than he was). 

    We just seen her pulm last friday and they did the same thing for us!  They rose her up to 3 puffs twice a day of Flovent to "try to get her lungs ready for the season".  We seen Dr. Kurland at Childrens (he's done transplants, professor teaching new doctors etc) and based on a new study of asthma patients, he also wants us to begin albuterol at the first sign of a cold instead of waiting until the cold irritates her lungs. So she is going to be on preventative albuterol at the first sign of sniffles now.  It was a little off-putting at first, I always worry about her getting too much of anything but I am going to trust Dr. Kurland, he certainly knows more than I do on this. 

     

    Thanks again for the helpful information, this board has been amazing and helped my sanity! 

  • K8sMom2002

    CAPuttPutt, yay on your son doing better and being back at school — and super helpful reminder about the FMLA paperwork! 

    Tiffany, our DD's doc also suggests pre-treating at the first sign of a cold, since one of DD's triggers is a cold or upper respiratory infection. And like you, I was a little nervous at first, but it really did work in her case, so that's part of our sick plan now. I actually have the same sick plan, and I can tell you that it has REALLY helped me. 

  • K8sMom2002

    Tiffany, you were one of the members that I thought of when I saw AAFA's latest blog post … AAFA has posted easy-to-follow instructions on how we can register our comments with the US Department of Transportation about how !