One of the few changes left in the site redesign won’t show up until this weekend, probably. It’s a minor addition, but I’ve been working on a *My Story* tab for up top, a summary of the early years with AG, the accompanying lung drama, and what it took to get her health under control.
In the meantime, I want to learn more about you:
What’s your diagnosis story?
If you’ve been reading awhile or even if you haven’t; if you leave comments all the time or you’ve never left one before; consider sharing your experience below.
Mine’s really long! You can find it here:
http://asthmadaytoday.wordpress.com/diagnosis-story/
Looking forward to hearing everybody’s diagnosis stories!
Jack was only 5 months old when he started getting sick. We went back and forth to the doctor’s office for months complaining of bad coughing and icky discharge from his nose. It wasn’t until Jack was close to a year old that the doctor finally laid it out, well, sort of. I know how old he was because the Doc showed me Jack’s file and how many times we’d been into his office – every three weeks starting in January and it was then March, I think. He never said the word “asthma,” but he wrote us prescriptions for Orapred, Zyrtec, a nebulizer, Albuterol and Pulmicort and a WHOLE LOT of instructions. I had no idea what all of these meds were for as I had never heard of them. When the nice young man arrived with the nebulizer and sat me down to show me how to use it, I remember sitting there thinking, “What is all of this?”
Then I started talking to my friend, Amy, who had been dealing with her daughter’s asthma for a few years and it clicked. Oh no, it’s asthma. Then I started reading the books she gave me and the websites she told me about and it all started coming together. He had bad cradle cap and sensitive skin and was moderately colicky as an infant — click. Coughing at night — click. Runny nose a few days before coughing — click.
I’m still disappointed that my pediatrician at the time wasn’t more helpful with the diagnosis and I got the distinct feeling that he was avoiding it in case he was wrong. He wasn’t wrong and I would have benefitted from more information and maybe made less mistakes. Thank God for Amy because I learned more from her than anyone else. Too bad she didn’t have an Amy when she and her little one were making heads or tails of it in the beginning.
My now 6 year old daughter was perfectly healthy (except for GERD/cholic) until she started daycare June 4, 2008 just before her 5th birthday. She almost immediately caught a cold that didn’t go away, and the coughing began June 19. From there, she was on numerous rounds of antibiotics. Her primary dr started her on albuterol, which didn’t do much. He then said it was asthma, and started her on a low amount of flovent. August 1 we saw her asthma dr for the first time, who immediately diagnosed her “cold” as a sinus infection. She almost cleared up, but not quite. We then saw an ENT who put her on 3 straight weeks of zithromax. Her sinuses finally seemed to clear around Halloween. Then in November she developed croup twice (spasmodic?)… she couldn’t even talk she was coughing so much. Then came December and walking pnuemonia. I think I will forever be traumatized by this experience. There was the fever and this loud rattling/gurgling sound when breathed. Fortunately, her fever broke exactly 48 hours after she began the antibiotics, so we were able to avoid hospitalization. Her primary doc doubled her flovent, and I took her to see the asthma doc again. She suspected GERD problems (see croup in Nov), and ordered some tests, which showed that she had not outgrown the GERD she had as an infant (test showed numerous reflux episodes). Her doc put her on prevacid, which has made a huge difference regarding upper respiratory issues. She was doing okay, aside from continual sinus infections, until she developed pneumonia June 1 (2009). Her sinus problems seemed to go away after her adenoids were removed (July), but we’re fighting again with a “cold” that will not go away (4 weeks now). She is coughing quite a bit and is very tired out… all I can think about is “what if she gets pneumonia again?”
I wanted to share our story, so others would be aware of the interactions between sinus problems, adenoids, GERD and asthma. If you/your child do not get any reprieve from symptoms for a good period of time, I would definitely ask your/your child’s doctor about additional tests regarding the above.
My 6 1/2 year old son was officially diagnosed when he was 5 (June 2008). It took about a year before then to get to the diagnosis. He suffered through a dozen ear infections as a baby until he got tubes at 18 mos, but never any respiratory issues. I have a strong memory of him coughing with a cold one evening when he couldn’t catch his breath when he was 3 or 4 but I didn’t think much of it. Then came the fall of 2008. He was sick on and off (mostly on) for all of September and October. He never stopped coughing. My husband called from home saying he was going to take him to the doctor because of the cough. He called an hour later from the doctor saying he had bronchospasm (I had to look that up) and was prescribed prednisone, albuterol, and that we needed a nebulizer. Apparently kids aren’t supposed to suck in their throats when they breath… Who knew. He’d get better, then sick again, went thru way too much prednisone. The term bronchospasm was used for a while then Reactive Airway Disorder. It seemed the doctor didn’t want to say asthma quite yet. In the meantime, my poor son was sleeping under a down comforter, in a room with old carpet, a cat, and dust mite filled pillows.
After several rounds of this, the doctor recommended Advair. We tried that for a week before I got freaked out by the black box warning. We switched to Flovent. It helped, kind of. One night out of seemingly nowhere, my “spider sense” told me something was up — I jumped out of bed and found my son in a full blown attack — not even able to cough. The next day we found out he had an ear infection.
Spring came and the Flovent wasn’t cutting it. He coudn’t run outside without needing some Albuterol. Finally, we took him to an Allergy/Asthma doctor and found out he’s allergic to dustmites, molds, grasses, cats (mildly) and got the official asthma diagnosis. With much handholding from the doctor, we made the switch back to the dreaded Advair — the best decision we’ve made. He still has 1-2 big flares a year that need prednisone, but with the Advair, some Claritin, and a Neti Pot, his asthma is very well controlled.
Looking back, I wish we had gone to an allergist sooner. It would have saved him a lot of discomfort that year as well as several doses of prednisone — the drug we love to hate (or is it hate to love).
I’m 50 years old and was diagnosed when I was 12. I wasn’t controlled on medications until I was in my 20’s. When I had an respiratory infection that kicked me out of control, and found a great pulmonologist at age 35, he looked at my history and said that if a child presented now with what I did at ages 3-4, the child would be diagnosed quickly.
I still have moderate-severe asthma, but have avoided ERs since 1995. I’m using multiple meds to control things, but I wish that they’d had these drugs when I was a child. I find I keep a sharp eye on my niece to see if she recovers well from colds, etc., but so far she has shown no signs of asthma.
Michelle–Thank you! That’s incredibly flattering. I can remember comparing driving-to-the-ER stories, can’t you? Asthma did totally blindside me, partly b/c–as I’m sure you also recall–just being a mom in the first place blindsided me, partly b/c there was no known asthma in the family, and yeah–partly b/c no one I knew was dealing with it. My initial reaction was, “ASTHMA? No, this isn’t asthma.” Oh, how very wrong I was.
Kelley–I can relate. My daughter was hospitalized with pneumonia at age 4, and it is impossible to feel unchanged by that. Thank you so much for sharing and emphasizing the asthma/GERD connection. It’s something I don’t write about much b/c my daughter doesn’t have it, but it IS an important risk factor and trigger to remember. I hope your daughter’s current illness/flare heals soon.
Allison–Thank you as well for emphasizing another crucial connection–the importance of allergy testing to either identify or eliminate possible triggers. So happy you found good control, and your *who knew?* comment about breathing made me laugh. I have video of AG at a year and half, before she was diagnosed at age 2. Poor kid sounds like she’s hyperventilating, she’s breathing so heavily–at the time, though, it didn’t sound abnormal to me. She was my first child. Who knew?
Barb–I know a few adults who have lifelong asthma, and they say the same thing about childhood medications. I’m extremely grateful for the advances made in medicine between then and now–asthma is hard enough, but at least my child has inhalers that work well w/few side effects that help her lead a healthy life. And your niece is lucky to have you watching out for her!
My older daughter has not been diagnosed, though I suspect we may be moving toward a “mild” diagnosis in the future. (Fingers crossed I’m wrong.) Your stories are amazing. You are very strong women and mothers!
I was diagnosed when I was 27. I’d been told by many doctors that I wheezed (and had frequent “chest colds” as a child, as well as pneumonia once when I was 6), but no one ever suggested that I do anything about it. After a bronchitis I couldn’t shake, I finally went and saw a pulmonologist, who diagnosed me. I’m 37 now, and my asthma is well controlled with QVAR and Astepro. I’m currently trying to wean off Nasacort. What REALLY did it for me, though, was allergy shots. I’m nearly at two years of them, and the results have been dramatic. I still need them weekly, though — haven’t been able to wean down to the once-a-month version.
I am sitting waiting word from my daughter who has our sweet asthma grand-daughter back at the doctors. Been waiting in the office almost an hour. Jolie had feverless pneumonia (her first ever bout) September 25 which lasted a week. Yesterday she awoke saying her throat hurt a bit. Mom kept her home just in case. By 11Am she had a 99.9 temp…her normal everyday temp runs low…around 97.6. So she surely was on her way to something. No one’s been out in her class but yesterday we had 8 out in a second grade class with fevers and coughs. I work in admin. so I’ve been keeping tabs. Thought we were actually slowing a bit with this bug. Jolie awoke needjng another xopenex (sp)and pulmicort neb at 5 AM. She had a 102 temp and diarrhea with nausea. Looked awful…..BTW, she was not able to get any flu shot b/c of being on the antibiotics and steroids for the pneumonia and had not been re-scheduled. She has many allergies specifically dairy and drug allergies. This is scary but yet similar to other viral bouts she’s weathered through the years. Keep us in thought as we do with all you suffering with this and your precious asthmatic little ones.
I sort of diagnosed my little one myself.
My older daughter had RSV when she was a baby, and now has reactive airways. She is symptom free, for the most part. It took about 7 years to get to that point, though. She would flare and need prednisone, and treatments…and then, almost like a switch, all her asthma symptoms went away. (but it was 7 years of good education)
My little one started with a cough, and trouble breathing when she was about 2. (she also has other medical issues..all starting about age 2) I remember calling the pediatrician and saying…”can I give M. a neb treatment, she sounds like A. when she needs one” We tried it, it helped…and thus began what seemed like a never ending cycle of more time ON the nebs than off. After 2 months, I brought her to a pediatric pulmonologist, who couldn’t get her under control, at ALL…his answer was “more medication” if 2 puffs of Flovent a day doesn’t help, try 3, 4, 5…at the end point, before I fired this doctor, she was on 12 puffs of Flovent a day, and she wasn’t even 3 yet. Her official diagnosis came at 27 months. We have family history of asthma, and it didn’t seem to make sense calling it something else, when we all knew what it WAS.
We started with a new doctor who is fabulous. He has tried several different medications. We are now on a plan that kind of works. She is not stable, but our plan keeps her out of the ER, which, really, is all I ask for at this point. Apparently, her Dr. would like to see her not need rescue meds at all (or at least less than once a week)….I thought that only needing them 4 days a week was pretty good…it’s at least far less than we USED to use them.
I spend a lot of time reading and learning, and trying to navigate…and find that middle ground between over protective and underprotective. I spend quite a bit of time being mad, sad, and scared. I’m so glad I found this blog, because it’s informative, and it makes me feel like I’m not alone in this.
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