Last Friday’s H1N1 update generated this comment:
I just don’t know how to get thru this winter without going crazy with worry… I have cried my self to sleep more than one night already… please some tips for sanity & balance?
Reading everything I can find, writing this blog, and interacting with you guys in the comments helps keep my head (mostly) clear about asthma in general, but swine flu is another story. Since AG came down with – and recovered from – H1N1 recently, a large portion of my worry over this pandemic evaporated. Sure, I’m still trying to keep the Steadfast Sidekick healthy, but with no asthma and only mild allergies, she’s not at high risk for complications the way her sister was. And sure, I’m keeping an eye out for any evidence this virus is mutating into a far deadlier form, but so far that doesn’t appear likely.
The point is, I can’t answer this reader’s question very well, but maybe some other readers can. A couple of you helped each other out in that same comment section with answers and information about pneumonia vaccinations. Plus, you left some good tips of your own on my Flu Survival Guide.
Therefore:
I turn to you, and I give you a trial run of this new Tuesday feature. Help another asthma parent out, and share your coping strategies below. Plus, if you like this feature and/or have a question of your own that you’d like to throw out there for other readers on future Tuesdays, let me know here or email me through the Contact form.
I don’t know how to help, since I’m currently worrying so much I can’t sleep. My 6yo asthmatic has H1N1 as of Friday, and first he was on the same track as the other kids in his class (19 got their symptoms on Fri.). Then, last night, his fever went back up to 102 and his breathing got rough. This morning–no fever, breathing OK. Is it only overnight that things are bad? Neither my husband nor I are sleeping. Ugh.
Off to read what your readers wrote before in the comments.
honestly, if my husband is around and I have not slept in a few days I have taken xanax for my mother-of-an-asthmatic-child anxiet. We are useless if we do not take care of ourselves and sometimes we are flat out not capable without help. I don’t take it lightly but there are times when the worry induces insomnia
I am so glad you posted this. This spring, my anxiety over this was bad enough to cause panic attacks (of which I am prone). All summer, I felt pretty good about it. But now that it’s here HERE, I’m struggling again.
I take comfort in news reports that say, “It’s just like any other flu, CFR may be as low as .007, Australia didn’t think things were TOO bad, etc.” And I freak when I read those other reports. I also take comfort in stories like yours: I/my child had it. We were sick, now we’re better.
I also tell myself, frequently, that within a month, the vaccine will be available OR we will have gotten it. Like you, I’ve almost wished we could catch it (assuming all recover uneventfully) so I could quit worrying so much. Crazy, I know.
Right now, the people around me with fever and cough are multiplying like crazy. Everyone is sick, but no one is calling it the flu. My family just came down with sore throat, runny nose, bronchial cough, and a little nausea. NO fever, no chills, very little fatigue. I keep thinking, “Maybe that was it!” But the chances of none of us having a fever seem slim.
My preschooler will miss school again tomorrow, even though she’s mostly recovered, because I know at least two of her classmates had high fevers Monday night. I don’t want to risk her catching this while she’s still so congested.
Hang in there, everyone. You are not alone. And thanks, Amy, for creating a forum where we can share our thoughts.
Gina–Hi, and thanks for stopping by. So sorry your son is having a rough time. My daughter’s 10, and her coughing was far, far worse at night. Which is pretty normal whenever her asthma acts up, of course, but she hadn’t been that bad for 3 or 4 years. The good news is that, although she sounded TERRIBLE towards the end, even after her flu symptoms left, she did recover without oral steroids.
Ang–The insomnia is the worst, isn’t it? Even when they’re not coughing, you lie awake, waiting for that next cough. When it gets really bad & I’m absolutely desperate for sleep, Mr. Asthma Mom is assigned to AG’s portion of the house & I go sleep somewhere I can’t hear her cough.
Her Grace–Sure thing! I’m telling you–asthma message boards saved my sanity when AG was younger.
When AG came down with it, one thing that was reassuring for me to remember — H1N1 still doesn’t cause as many deaths as seasonal flu.
Whenever my son is doing fine (which is most of the time), I ALWAYS forget how stressful his flares are. Then as soon as the first cough starts, my heart races, and my stomach flips. His worst big flare last winter sent my anxiety thru the roof and me to the bathroom
. It took me 3 months and lots of probiotics to get my digestive system back in order from that stress trigger. So, I don’t have any answers for how to cope, just some empathy for how stressful it can be to have a little one struggling for breath.
And Gina — it’s always the nights that are bad for me when my 6yo is sick. He’ll be basically fine during the day, but come 12:30am, that’s when the action always starts. I hope your all doing better and can get some sleep.
Sorry to hear that another child on this website has H1N1. Amy I am so relieved that AG has made a full recovery. My twins got in the car Wed. after school last week and told me that there were 3 sick kids in their class. I didn’t send them in Thursday for fear of them catching something, and the principal took everyones temp. My son’s band leader came down with flu/fever Wed. evening, just hours after hand over hand teaching my son how to hold his trumpet properly! Friday morning, my husband and I couldn’t stand the worry anymore and made the decision to homeschool our children (4th grade) until they get their H1N1 vaccines. School is unbelievably understanding (only 100 students – private school) and are sending their work home, I have all their text books and we are doing 5 hours schooling a day. Think we will be ahead of everyone else at this rate. I am very lucky in that I am not working outside of the home I know. My stress levels have decreased to almost normal now…. I never used to worry about germs and sniffles, but since my son was diagnosed with asthma, it has changed me into a completely different person – I would like the old carefree me back. I have no tips on how to deal with the anxiety and fear, but just know there are others out there going through the same thing.
Allison–”I ALWAYS forget how stressful his flares are.”
Yes, that’s it exactly. Since AG is 10 and was diagnosed at 2, we’ve been doing this eight – EIGHT! – years now and still, every bad flare ratchets my nerves right back up. The one thing that makes it easier now than when she was little is that she’s old enough to come tell me if she’s having problems breathing.
Louise–Thank you very much! She went to volleyball practice last night after missing a week and a half’s worth of practice and games, and it was a relief to see her back to her old self.
It sounds like you made the right decision for your family & for yourself–and the school sounds accommodating and wonderful.
Well, I have to confess that post was me at a moment of stress… I thought I was in a good frame of mind (I had just saw my GP for my flu shot and to ck on my own mild/intermittent asthma and got a dose of common sense while there) THEN, I came home read your post, and then checked out the Effect Measure site… there was a blurb about how all the modern medicine/ventilators are not going to help. It was just enough doomsday to send me over the edge after the the state (MN) announced that a healthy child with no underlying symptoms had died after being sent home from the hospital.
Since, then I have decided I’m not going back to the EM site. Too much info for me. My AB (2nd grader) has had a bad cough/cold this week and did have to go to oral steroids. My Ped said at this dose for 5 days doesn’t compromise the immune system as long as it doesn’t keep happening. The first day my son was out (monday), his school reached the 5% of whole school with influenza symptoms which the state requires them to report. I don’t know what it has been for the last few days. He will probably go back Friday.
I am wondering if one of our asthma kids gets H1N1, obviously they should get anti-virals, but as far as the cough/ asthma would they do oral steroids if nebs weren’t working? What are the options? Then I assume you would have to take them in every other day or so to be listened to, to be sure pneumonia isn’t developing?
It’s nice to know I’m not the only one that loses a bit of sanity over this… hope by next summer this all in the past.
Karen, my daughter has probable h1n1 and they gave her tamiflu and steroids because the neb was not cutting it-at all! hope that helps.
oh, and nope, we are not going in for checks for pneumonia. Only if her fever rebounds or her breathing worsens.
Hi, Karen–Yes, the next step is usually oral steroids if the flaring won’t stop. It won’t be the same for each kid and each dr., of course, but the toughest time AG ever had with the seasonal flu (when she was younger) went like this: short burst of prednisone, 4-day break while she kept up her regular nebs, another short burst of prednisone, then a weeklong stay in the hospital on oxygen. She got admitted when her lung x-rays showed pneumonia & after the steroids didn’t help.
I’m sorry Effect Measure made you worry more! I think your comment brings up an important point, though–coping mechanisms aren’t going to be the same for everyone. What works for me–reading everything–may be the thing that sends someone else over the edge.
As far as EM itself goes, I can’t speak for its writer but I got the impression (especially from the comments) the text was addressing casual attitudes about H1N1 rather than warning that ventilators and such won’t help. The anti-vaccination crowd drives EM sort of nuts, and the point is that people shouldn’t ignore the dangers any flu poses and/or avoid preventative measures based on the assumption that modern medical technology will cure them. That doesn’t mean it won’t cure anyone, but that there are no guarantees & so we need to do what we can, too, rather than just rely on the hospitals.
Anyway, I’m not trying to tell you to read EM–I just don’t want to add to your worry!
On a related note, Tamiflu really, REALLY helped AG. I didn’t take it, and I probably felt worse and for twice as long as she did. Her flu time was cut in half compared to mine, even as her asthma symptoms lingered.
Thanks for all the info. By short burst Amy do you mean a 5 day course? Is the 4 days as your daughter had what is required so that it is not a continous dosage that would affect her immune system? My son will finish his orapred Friday. If he goes back to school and get’s h1n1 and is back to severe coughing he could not then be on it again until Wednesday? If this is how it works then I think I will wait until Monday to send him back. There is a confirmed case in his class and about 10% of the school is out.
Which brings me to another question, has anyone read much about flu WITHOUT fever? AB Ped commented this bug was similiar to H1N1 without the fever… then this erupts at school on Monday? I read 1/3 of confirmed cases in Mexico had no fever but nothing has been said about this in US cases?
I have always been a read everything person, but after how many years of asthma (since 4m old) /food allergy (since he was 18m) issues this might be the year just to not read too much. Thank you for clarifying EM, your interpretation makes sense, I just took it too literally at the time.
It is really nice to get the opinions/hear of experiences of others here that have similar histories. Many times friends and especially relatives that don’t have these issues don’t get the proactive parania that sometimes is standard operation procedure for some of us.
LOL…I love “proactive paranoia.” That’s so great, and so accurate.
My daughter did have 5-day bursts, and the break came b/c after the first burst, she improved slightly and seemed to be on the mend. When it became clear that she was flaring badly again, her ped. tried one more 5-day burst on the assumption that since she improved a little the first time, maybe she needed a little more help.
5-day bursts are definitely pretty standard for kids b/c drs. don’t want to overload their systems, but I don’t know how common it is to do 2 in a row with a short break in between. In my daughter’s case, she didn’t seem that bad off when she started the second burst. If her symptoms had been worse (like they were by the END of that second burst–pulse ox had dropped, fluid on the x-rays, etc.), I imagine they would have admitted her to begin with, if that makes sense. She was 4 years-old at the time, btw.
As far as the fever goes, I’ve never heard of H1N1 w/out it. Maybe someone else on here has?
In the U.S., the no fever thing is being completely ignored, but both Canada and Mexico reported a good number of cases without it. It’s hard to find any information, though. Basically doctors here are saying no flu, no fever.
Just last night my cousin told me, “Boy, if it weren’t for no fever, I’d think I have the flu.” She has cough, congestion, body aches, chills, severe fatigue. Her husband had exactly the same thing.
Another friend ran a fever just for an afternoon – -about 100 degrees. It’s my suspicion these people have the flu, but since no one is testing, who knows?
I just read this article and really liked it. Thought you all might too: http://www.newyorker.com/talk/comment/2009/10/12/091012taco_talk_specter
I nearly cried when I read the responses to this post. To see so many other moms out there going through exactly what I am – and feeling as I do – is so reassuring. Lying awake waiting for the cough, then jumping a foot and having your heart race and stomach clench when it comes…sneaking into their room in the middle of the night to listen to how they sound…wanting to read everything you can and realizing it is only making you more anxious…I feel like I am losing my mind sometimes! I wish I had some good coping mechanisims, and am considering anti-anxiety medication, but reading these posts and realizing it is not just me ‘over reacting’ will help, especially in the middle of the dreaded night. Thanks to you all!
Hi Lesley, and welcome to the site. I’m so glad you found your way here & happy that reading comments from other asthma parents helps…I know it sure helps me. Please stick around–I’d love to see more of your input in the site.
It is two weeks ago today that my more-than-precious grand-daughter(on her 7th birthday!) was diagnosed (x-ray) with pneumonia. She has viral-induced asthma, among other allergies she is also dairy(hives) and penicillin sensitive. B/C of her dairy issues, we also keep her away from chocolates/seafood/and of course all nuts to be on the safe side. Poor babe has never enjoyed a real ice cream cone or hot cocoa or P& J sandwich. Started using the nebulizer at 2 months with bronchiolitis. She seems to share any and every germ in her classroom. This most recent bug was very unusual. When we picked her up from school, (Thursday) she had a slight cough. She was very animated telling us about her fun gym day b/c she was chosen captain of her kickball team. So we assumed her cough might be from running outdoors with the Autumn mold/allergy stuff. She ate well, had no fever but Mom gave her a xoepenex treatment before bed for the increasing by now junky-sounding cough. Mom kept her home Friday just in case. and went to the Ped who said it was probably a virus. Now this was with NO fever, no runny nose(a bit of drainage in throat) but LOTS of coughing. Mom was told to give neb treatments every four hours during the day. A few hours after going to sleep, we were all awakened by her shrill crying and non-sensical sleep-talking. She could not comforted/quieted which is very unusual for her sweet demeanor. Her temp was 98.8 and she was having alot of retracting breathing and unsettling nausea. She was actually better when she finally vomited(cleared the gunk a bit). The night call nurse told my daughter NOT to give her any more treatments until she was re-checked. She said the treatments can cause the issues she was having. Despite our better judgement, (with years of going through this with her Mom and four other kiddos with varying allergy/asthma issues), we decided maybe we needed to listen to the nurse. Our darlin’ woke up still feverless yet horrible constant coughing. A trip back to ped(of course, regular dr not there) and NP gave her a treatment which did not alleviate wheeze then gave her a duo-Neb which still did not help so xray at hospital confirmed pneumonia showing in left lung. So home she went…azithromycin, oral pred(both 5 days) and duo-neb (7 days)and pulmicort 2x day, last one today. Coughing lasted a good 6-7 days even with all the treatments. This is actually how most of her cold flares go. I can vividly recall with my own kids, its like cough day one, more cough day 2, tons of cough day 3 -5, then slowly it starts to back off. Through even the worse illnesses(lots of coughing w/higher fevers) she had never had pneumonia.
After all this extremely long dissertation(SORRY!) my point is, the drs never mentioned flu and I could not believe she progressed to PNEUMONIA without FEVER or even prior cold symptoms! Very scary. Esp. since she comes down with these runny nose = cough-cough sessions several times a year. We are all worried about the NEXT time. Pneumonia has always been the dreaded end-all of the flu and yet she was diagnosed without really being sick beforehand! So, IS this a new bug…a fever-less flu? Final Dr. visit said it was mucous-plugs in lungs causing her problems….but still, it seems very strange the way this evolved. She was back in school all week and (thank goodness) has no new symptoms of germ-sharing yet! And there so far has been very minimal absenteeism in her school.
Thanks for listening to this Mom(35 years already!) who as a “Mima” worries even more(and I was a major mess back then too!)
Roe,
There is an odd comfort from hearing others going through the same thing. My daughter’s asthma started from a sinus infection that did not go completely away until almost a year later (had an adenoidectomy). After numerous rounds on antibiotics for it, her dr wanted her to have a break on them since the SI was looking like it was cleared up. 2 weeks later (in the middle of summer) she developed a high fever just before midnight…the ER x-rays showed that she had pneumonia in her right lung. She seems to be better now after the adenoid surgery, but to know that she can seemingly, just randomly, develop pnuemonia keeps me in a constant state of anxiety. She has a cold now, so we’ve seen her dr., increased her maintenance meds, added an antibiotic nasal wash (to her usual ritual of saline rinses and nasonex). The good news is that when we saw the dr. last week her lung function was really good – this is an improvement over her ususally deminished lung function during colds. My daughter’s asthma is always worsened by any post nasal drip, whether from allergies (she takes claritin daily with the nasonex) or a cold or sinus infection or her GERD. I hope your grand daughter stays better and doesn’t have to go through any bouts of pneumonia again.
I can’t thank you enough Amy for creating this site! I’m a single asthma mom, so in addition to actually being all alone with my AG, this disease has made me feel even more isolated – it’s great to see I’m really not alone.
Hi. I just found this website and it was really encouraging to me to discover that other moms also have anxiety about their child’s asthma. My 5 yr old and 4 yr old boys both have asthma. My 5 yr old has h1n1, no symptoms for my 4 yr old… yet. I am wondering, does anyone know if the albuterol treatments @ neb could possibly push the infection down deeper in my son’s airways. I know that sounds dumb, but I was just wanting another opinion. My dr. said not to bother with tamiflu, so I am giving robitussin for chest congestion, albuterol @ neb, ibuprofen for headache and fever. Any other suggestions?? Thanks