JuliaRyan.com. Powered by Blogger.

Social Media

Life Lately | On Asthma and Food Allergies

January 27, 2015

First of all, I just want to say thank you so much for all of you who left comments, sent texts, or wrote emails checking on me and Tagg.  He is doing so much better!  Like two nights in a row of silent sleep better!  For those of you who are just now logging on, let me get you caught up.  Tagg started coming down with a little virus early last week that led into a full blown asthma attack.   It took an afternoon at the pediatrician followed by a three day stint in hospital to finally get his breathing under control.  We're still on daily nebulizer treatments at home but only twice a day.


This is where I've had to go back and change the title of this post from Winter Whites to Life Lately.  I just couldn't keep on with my regular blogging when there is something so big weighing down my thoughts.  I need this post.

So, asthma.  I'd be lying if I said this didn't sink my heart.  I'd be so completely full of shit right now if I skipped over the heaviness I'm carrying in favor of some lighthearted good positive spin.  I've been waiting to do an update on his surgery from this summer, on his food allergies, and his sleeplessness because I wanted to come on here and be the poster mom for positivity.  The shining beacon of how not to let if affect your life.  Full of recipes and advice.  But the thing is, that's not me and that is probably the hardest part.  I'm used to rolling with the punches and researching until I'm certain and feeling prepared, if not in control.  I'm having a hard time being Pollyanna when I feel unequipped to keep my child alive.  Oxygen levels and wheezing and monitoring and assessing the situation are frightening to me.  Is it an anaphylaxis allergy crisis or a serious asthma situation?  This feels like one more weight on my heart.

There are a million ways that this does and will affect my son more than it will ever touch me and that leaves me feeling even more down.  I feel like I'm failing at keeping him safe.  I realize in the scheme of things that his medical issues barely touch the surface of tragedy or concern.  I am so aware of all the ways that disease can ravage childhood and I am so truly thankful that we've escaped that path.  I don't want anyone reading this to think that I place food allergies and asthma above life-threatening long term illness or disability. 

But still, every single day I worry for him.  Each night I pray that the cough won't come or that I will know what to do at 3am if it does.  I worry for his safety and my ability to navigate his world.  I worry that the foods we buy are accidentally contaminated (have you seen the cumin disaster?  Try eliminating anything with "spice" or "cumin" on a box top in case of trace peanuts).  I worry that someone on the playground or the little kid shopping cart before us ate a peanut butter sandwich that could send him into respiratory distress.  I worry that every cough will send us to the ER.  The constant anxiety which I have suffered for the past six months has been crippling.  He coughs, a lot.  I hold my breath (ironic, right) and lose my appetite with every one.

This is where the hopeful part of this post comes in.  Hello, I'm not a total debbie downer.  I've been sitting on this asthma diagnosis for a full week.  A sleepless, scary, anxiety filled seven days.  But even just sitting down to write thins morning is helping.  I can literally feel my thoughts starting to organize in front of me.  Anyone who feels a deep underlying need to write knows what I mean here.  I'm hearing the quiet in my head and in my house.  After just a few days on a new maintenance  drug the coughing has subsided.  He's down to two breathing treatments a day and I've noticed that the coughing is only right before treatments start.  And we've had silent nights.  I can't even explain to you what a gift it is to sleep through the night.  Of course, I've been up some out of habit.  But my sweet sweet boy is getting the much needed rest his body has craved forever.  Literally.


I'm so hopeful that this new medicine works wonders on his cough and wheezing and reduces his anxiety as well as mine.  Poor baby is so aware now and it terrifies him each time his chest tightens.  He was so sweet giving Hmm a treatment with him the other morning.  He told me that He was brave but Hmm was not so she would need lots of love.  Child Psychology 101 over here. 

I know this post wasn't exactly my most well thought out or worded the best but I felt like it was something I needed to talk about before going forward so thank you for letting me be me here.  I'm so grateful to have this space here to talk about whatever I need to say.

Pin ThisShare on Tumblr

26 comments:

  1. Been there with the undiagnosed asthma right down to the toddler hospital stay. Asthma is an allergy, so not surprising he would have both. You will learn to manage it with meds and he will thrive. I thought the asthma diagnosis was the worst thing, but really it was the best because after we got it under control, he didn't cough all the time and slept better. Go to a respiratory specialist in asthma, many peds groups have one. And my guy was terrified too, he will get past that too, it just takes time! Good luck!

    ReplyDelete
  2. This comment has been removed by the author.

    ReplyDelete
  3. You are an incredible writer :) best wishes for rest and recovery for you, strong momma, and sweet baby boy!!

    ReplyDelete
  4. I am sure it has been a hard to road to navigate and you are most definitely allowed to be worried/a debbie downer/complain about the situation. It is your child and this can be a life threatening illness in extreme cases, so don't negate your feelings. I love how you said writing has helped you clarify and organize your thoughts; I know exactly what you mean. So glad you have a positive space to do that. I will be thinking of you and Tagg. Best of luck getting everything figured out. I hope this treatment plan continues to work for him!

    ReplyDelete
  5. Both you and Tag are doing an amazing job managing all of this. I know it's scary...I was in his place as a child. But as he grows he will be in such a good place to manage his asthma and it won't be nearly as crippling as it is now. Continue to trust your gut and put his health first, even if it means wiping down every shopping cart like crazy before he gets in! Stay strong for him but feel free to pour your (honest) heart out here. You have more prayers and friends thinking about y'all than you'll ever know!

    ReplyDelete
  6. Oh, sweet boy. I'm praying for you and your little guy. We moms take on such a huge sense of responsiblity with raising our children. As difficult as it is to accept, we aren't the ones in charge. With that said, I pray that the doctors will find the best treatment for him and that you'll have the patience and courage to deal with that. Hang in there! You're doing a fabulous job!

    ReplyDelete
  7. Been in your shoes and it's very frightening and such a feeling of helplessness. Stay strong, work with a a great doctor and also allergist that you trust completely-makes all the difference. In addition, I recommend talking with your allergist about Singulair. It saved my son and daughter as my son was put on it at 2.5 years old and finally came off of it when he was 12. It's a chewable tablet that worked wonders in my opinion. My daughter has been on it since she was five and is now 11.5 and still on it. It's been great for us in managing their asthma. We have a home nebulizer which saved us from so many hospital stays (we had SO many as babies with them and spent many Christmases in the ER/hospital sadly). As soon as a cold came on, we would put them on breathing treatments and it saved us every time. I highly recommend but again, work with your trusted doctors obviously, I'm just letting you know what worked for us having been in your shoes. Not an easy road to travel but I can tell you that with my kids, as they aged/matured, it became much more manageable and the occurences lessened tremendously. Best wishes for a much easier road for you all.

    ReplyDelete
  8. I haven't been in your shoes so I don't have words of wisdom, but I hope that you find peace and answers in the coming months and that this season too shall pass. xx

    ReplyDelete
  9. I'm so glad that with the new diagnosis and medicine that Tagg is sleeping and feeling better! I love that you always keep it real here. Real life is better than puppies and rainbows and fakeness any day. Thoughts and prayers that he continues on the upward path!

    ReplyDelete
  10. Thanks for the update! I have so been there! I have had asthma my whole life and now I passed it on to my 4 year old. Our life has changed since we have been able to have the breathing machine at home. Any time I hear a strange cough we do a treatment. Even if it is nothing, it is not hurting him so I am all about it!

    ReplyDelete
    Replies
    1. Reading the comments above.... we also take Singular daily and if he is off of it I can tell a HUGE difference.

      Delete
    2. I call Singulair the miracle drug. It was FINALLY the answer for us after years of frustration and countless hospital trips. Best stuff ever and zero side effects unless you go off of it because yep, instant difference is noticed. That's why it's a daily med not to be missed! We also keep Albuterol and generic pulmicort on hand as well. Again, I have fabulous physicians that keep us stocked and in check with visits. In fact, my daughter has a follow-up visit this Friday with the doctor on her asthma check and refill of singulair...happy to take her to these appointments for sure!

      Delete
  11. Prayers and hugs to you all. So happy that your blog is first and foremost a place for YOU!!
    XO
    Amelia

    ReplyDelete
  12. It was a wonderful post, I much prefer hearing the ins and outs (ups and downs?) of life than the lastest trend (though I like that too, but it's not as real). I'm so sorry you are battling this with Tagg. I cannot even imagine, and knowing how anxious I am, without these issues, I can't image being in your shoes. I hope this is something you guys learn to manage quickly and that it doesn't cause many problems in the future. Lots of T&Ps for strength to get through this... and wine too!

    ReplyDelete
  13. I am praying for your sweet and precious Tagg. This is your blog so be you, that's all we want anyway. This is hard for you, yes while it is something controllable and will get better I am sure it is very frightening. Stay strong. Thank you for your keen sense of design. I have learned so much through your blog and am so very grateful to have stumbled upon it. And....I am only an hour and a half from you!! www.ramseyliving.blogspot.com

    ReplyDelete
  14. I feel for you Julia and I feel for your son too. Thank you for sharing and I hoped writing this post helped provide some relief. My son was diagnosed with severe peanut allergies and asthma when he was 2 years old. He is 7 now and his peanut allergy while still bad not as severe. It has lessened over the years. And, I am so thankful. His asthma not so much, but as your son gets bigger and stronger, he'll be able to cope better. My son seems to manage it better even though he still has attacks. I'll be saying prayers for you, Tagg and your family!

    ReplyDelete
  15. Sending prayers your way. I can only imagine how overwhelming all this must feel. We are just dealing with the dairy allergy right now and it's enough to make you crazy. I am so overly aware now of how dairy is literally in EVERY single thing. It's insanity. And then like you said you worry about cross contamination. But to give you some peace I grew up with horrible environmental allergies which goes hand in hand with asthma and I turned out okay. I actually kind of grew of the asthma and just occasionally have some exercise induced episodes. So keeping you and your adorable family in my thoughts and hope things get better! XO

    ReplyDelete
  16. Glad Tagg is doing better, lots of prayers coming your way!!

    ReplyDelete
  17. Julia, I am glad to hear your son is doing better. My two year old son, Wells (named after his Great Grandfather), also has a severe peanut allergy. And he too has coughing fits often. We thankfully have a nebulizer at home after a scary bout with a respiratory virus a few months ago. Now I cringe anytime his nose starts to run in fear of the scary wheezing. It's amazing to me how children now need so many doctors and how we get sort of passed from one to another. First the pediatrician, then we saw a dermatologist for his eczema, then an allergist for the peanut incidents. Now I am wondering about who to see about a potential asthm diagnosis. It's enough to make any mother a worried mess. So, I just wanted to say, you aren't a Debbie Downer. Just a worried mama who happens to share her life through writing and it would be inauthentic for you not to share your feelings on this. Sending you warm thoughts to get though each day, even if it's one at a time!

    ReplyDelete
  18. Gosh that is so hard. Wheezinng and coughs are really scary. I don't know if you do this, but when my son can't breathe well, I feel like I can't breathe either. My brother and my best friend growing up had terrible asthma. My mom is still traumatized from my brother even though I can't remember ending up in the hospital with him. I know she always says she thinks she could have done more. But the good news is he has grown out of it and runs marathons and is one of those crossfit junkies and doesn't really have any complications as a grown up. Praying that you have the same outcome! (As I'm typing this, I hear a coughing fit down the hall. Time to get out the neb!)

    ReplyDelete
  19. You are one strong mama, Julia! No one expects perfection or Pollyanna-- you're a mom who loves big and gives her all. Tagg couldn't ask for a more wonderful mother.

    ReplyDelete
  20. So thankful Tagg is ok and mama is too but thank you so much for this post. We are dealing with a peanut allergy over here too so appreciate the honesty.

    ReplyDelete
  21. I'm so glad Tagg is better. Praying for his health, and peace for you. You are an amazing Mom!!!

    ReplyDelete
  22. Julia, Thank you for posting this. You really spoke to what I feel in my heart everyday as a mom with children with food allergies/asthma. My son (now 5yrs) has life threatening allergies to milk, eggs, beef, peanuts, tree nuts and shellfish, as well as asthma and eczema. In the beginning it was very frightening, navigating all of the diagnoses and realizing through lots of trial and error what they meant. My heart sank as well, but we've gotten used to it with time. My heart stops and adrenaline/anxiety start pumping with each cough as well, so thankfully they are few and far between now.
    My kids have been on Singulair for almost a year, and it has really cut most of the random/non-food related coughing out. Qvar has also done a wonderful job of keeping the asthma in control, apparently the particle size of the medicine is the smallest on the market and can disperse into the lungs much better with lower doses of steroids than competing inhalers. Waking up in the middle of the night is a rare occasion for us now, thank goodness.

    Thankfully we have found a group of understanding friends that don't act like it's a drag that we can't have Cheetos, Klondike ice cream bars, Goldfish, uncrustables, Doritos, Pirates Booty when we get together. It can be frustrating with the challenges that restaurants, birthday parties, trips to the grocery, play cafes, etc. present. I am with you and feel very blessed that this is our only challenge and we are not facing a terminal illness, or unfair and crippling disease. It just takes a lot of planning, organization, and pro activeness on our part. We are the ones hosting most of the playdates and parties so I can control what foods we eat and that helps a lot. Good luck Julia, I started following your blog because I love your style, and it's nice to know there's someone out there on the same path as us. xoxo

    ReplyDelete
  23. My 2 cents: I have 3 kids. My two oldest ones have outgrown their asthma (they are 13 and 11). I have not slept very well the last 2 nights because my youngest one (7) has asthma and severe environmental allergies. It will get better, I promise. My little one used to get sick all the time but she is getting much stronger - she had not coughed in 3 months and during winter!!! You have to find a asthma/allergy specialist that you trust. I adore mine and that makes all the difference. My daughter is also on singulair and antihistamines and we ALWAYS have albuterol and steroids in hand. It is completely understandable to be terrified and at your wits end when you child can't stop coughing but again, you get that hang of it and your boy will get better :)

    ReplyDelete
  24. My 2 cents: I have 3 kids. My two oldest ones have outgrown their asthma (they are 13 and 11). I have not slept very well the last 2 nights because my youngest one (7) has asthma and severe environmental allergies. It will get better, I promise. My little one used to get sick all the time but she is getting much stronger - she had not coughed in 3 months and during winter!!! You have to find a asthma/allergy specialist that you trust. I adore mine and that makes all the difference. My daughter is also on singulair and antihistamines and we ALWAYS have albuterol and steroids in hand. It is completely understandable to be terrified and at your wits end when you child can't stop coughing but again, you get that hang of it and your boy will get better :)

    ReplyDelete

Thanks for joining the conversation!

 

Julia Ryan© Theme by Blog Milk