marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
2011-06-29 10:23 pm

Stupid atypical asthma

I've been increasingly fatigued lately, and just chalked it up to generic tiredness--lack of sleep, too much work stress.  I have always had the habit of leaning on nearby furniture when standing up for a long time, but in the past three weeks I've taken to also sidling up to walls so I can lean against them.  This is much harder to do in a casual way than leaning against a desk, particularly in an open-plan office, so I've had to explain that I'm tired a couple of times to people.

Then a couple of days ago I was playing trains on the floor with Charlie, which involves sitting on the rug and pushing a train on a track and saying "choo choo."  He supplies all the enthusiasm and I don't need to budge from the same spot while playing, so it's hardly a taxing endeavor.  But I found myself feeling exhausted and also very bored--like, really wanting to get up, move around, put on laundry, and do some other kinetic things.  That seemed strange to me, because my internal "I'm lazy" narrative would suggest that sitting on the floor would be my preferred activity when I'm tired.

So I checked my breathing with my peak flow meter and found myself in the yellow zone - that is, the zone that says it's time to use an inhaler.  No coughing, no wheezing, no symptoms that I've ever recognized as asthma symptoms.  Damn it!  And looking back I see a pattern of increasing tiredness for the past two months--basically, starting a month after I went off my inhaled steroid.  Google tells me that atypical asthma symptoms include sighing, anxiety attacks, fatigue, lack of concentration...I've spent a couple of months wondering if I'm depressed, but since my mood has been fine it's been very puzzling. Until now.  

So it seems that I may have this low-level constant pre-attack thing happening. I'm seeing my doctor tomorrow night to ask if I can go back on my steroid, and I'm taking a dose tonight because I'm pretty sure she's gonna say yes.

Normally I try not to be irritated with loved ones for unknowingly harming me, but I have to admit I'm irritated right now with all five of the smoking family members I shared a home with as a child. Grumble grumble passive smoke grumble.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
2011-03-13 11:06 pm

Well, foo.

Charlie woke up at 1:30 am (pre-DST-time) and eventually went back to sleep at 5 am (post-DST time) and stayed asleep until 9. Managed to have a playdate with only a couple of meltdowns, then took a nap (half an hour shorter than usual).  Don't recall if there was another meltdown after that or just generally being an asshole - in either case there was hitting, biting, and scratching, also some pushing and bouts of clinginess.  In between all that he took a bath without complaining and was cheery and hypomanic in phases. 

On the good side, this has shown us pretty definitively that his aggressive and moody behaviors come from being tired, period.  The fact that some drugs make him extra tired (benadryl) and that tiredness makes him less verbal also play a part.  Based on what we've seen over the last month, we can say with confidence that good sleep equals good behavior.  This is huge because it means he doesn't have a neurological/developmental problem, or at least not a serious one.

On the bad side, Singulair goes on the no list, because these recent sleep disturbances appear to be tied to taking it.  We stopped giving it today (we had been giving it in the morning, to better monitor its effects and to try to separate it somewhat from sleep, to no avail apparently).  If he's in clear need of it we can probably give it for 3 days or so, but we can't use it for regular maintenance. (We use albuterol for rescue bronchodilation during a flare, but the idea of the other drugs is to prevent flares from happening at all)

On the other good side, there's a possibility that the asthma improvement we've been seeing is really down to taking Tums twice a day, rather than due to things he reacts badly to.  This isn't entirely absurd, because he does have a history of reflux, and his asthma typically manifests as a cough with eventual vomiting, which could easily be GERD.  Also he's been eating us out house and home all week, coinciding with the Tums regimen.

Now I have to decide if my asthma doctor should continue to be his asthma doctor, or if we should go back to the overly busy other asthma doctor who is a genius-by-reputation and was on Mystery Diagnosis and is the regular pulmonolgist at the local Children's hospital.  They both do pediatrics but that's his specialty; her approach to immunology is more to my liking, but his approach to prescribing is a little more nuanced.  Before I take him back to either, though, we'll be seeing the GI specialist, which will inform the rest of the approach, I hope.

Meanwhile I really hope Singulair has a short half-life!  Because this up-in-the-wee-hours horseshit has worn out its welcome, for serious.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
2011-03-11 02:05 pm

Better sleeping

Charlie slept well last night, except for a bad dream at 4 am, from which I was able to rouse him and then settle him again without a problem. However, we prefer to have no bad dreams, at least not medically induced ones, and he still got up a little earlier than he should have, considering that he must have been wiped out from the previous night's shenanigans. So for this morning's dose of Singulair I gave him half a pill instead of a whole one, and We Shall See.  Hopefully we will not go back to having everyone's sleep disurbed by coughing and barfing, as is the case when his asthma is acting up.

On the plus side, his behavior has been so consistent lately that we have dared to engage our teenaged neighbor to come over and babysit him on Saturday, after several months of not daring because we didn't want him to go all slappy on her.   I will be out and Mike will mostly hang around the house and get some things done while Charlie & neighbor get reacquainted.  If it goes well, next time we'll both go out, togther, like a couple of childfree hedonists! 
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
2011-03-10 03:20 pm

Singulair Day 6

Charlie got up at 2:30 this morning.

And stayed up.

Mike got the short straw and has stayed home with him today, since sending a manic toddler to daycare does not produce good results. 

OTOH, Singulair is controlling the hell out of his asthma.

And he did take a nap finally around noon.

And he hasn't been angry or aggressive.

And he's eating well.

Tomorrow morning we'll decide, based on whatever shenanigans occur tonight, if maybe we should cut him back to half a dose.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
2011-02-14 04:01 pm

Puzzling

Oh 2 pm daily asthma attack, where are you coming from? I eat lunch at noon, and I don't have a snack til 3 if I have one at all. Is my 9 pm dose of singulair wearing off right then? Is there a miniature invisible dust storm that passes through on some kind of regular schedule?
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
2010-12-31 09:42 am

Allergy doc wins again

So we took Charlie to my/his allergist/asthma specialist, and she listened to his lungs and switched up the plan a bit.  She said not to give him the singulair or the pulmacort right now, because those are to prevent a problem and right now he's already having a problem.  She said to keep him on the antibiotic, give him more frequent breathing treatments (nebulized xopanex), and start prednisone right away.  In a week we're going back and at that point she'll evaluate him for asthma, but she said there's no point in trying to diagnose it when he's in the middle of a respiratory infection. 

If she does diagnose asthma, she said she'll probably put him on once-a-day pulmacort for 6 weeks or so, and then take him off it again, which will get him through the winter.  She said parents prefer to start with singulair because it's a chewable tablet whereas pulmacort is nebulized, but singulair only prevents one type of asthma whereas pulmacort prevents all types. So she always starts with pulmacort and only adds singulair if the asthma isn't controlled with just pulmacort.  It is SO WEIRD to have a doctor explain the whole rationale for prescribing stuff, seriously.  Also with the prednisone she said there are two types, liquid and a quick-dissolve tablet.  The tablet is more expensive but the liquid can cause an upset stomach, so which would we prefer her to prescribe? OUR CHOICE. 

At the same time she's not touchy feely at all, and she was like, "here, he should take this first prednisone tablet immediately, oh, you're nervous about giving him prednisone because of a possible rebound eczema flareup when he finishes taking it? Well, if he doesn't take it he's going to end up in the hospital, so how about you give him this right now.  You have cream for the eczema, right? so shut up, mom."  Not in those exact words, of course, but that was the basic idea.

So we have a followup with her in a week, and a followup with the regular pediatrician in a week, and that gives us time to find a nice way to tell the regular pediatrician "uh, we only sort of did what you said and we mostly totally went to another doctor, but we still love you, sorry!" 
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
2010-11-30 09:17 am

Mostly recovered

We had a very nice turkey day, followed by Charlie having a big old allergy flareup on Friday afternoon & evening, persisting through Sunday morning. Rash, cough, vomiting, wheezing. Not a lot of fun. We think he may be allergic to dogs, since he spent most of Thursday playing with, hugging, and kissing my brother's dog and otherwise didn't have any unusual exposures.

Fortunately he was good about taking his Albuterol via nebulizer--we have an inhaler but he won't use the staging chamber thing that helps him to inhale it properly, and the neb just works better because it doesn't require him to be able to breathe well to use it. So we got through the weekend without an ER visit, yay! However the Albuterol made him hyper like whoah. Sunday night he was feeling fine, as evidenced by his getting up at 1:30 am and playing until 3 am.

Monday I dropped him off at school and took the day off from work--I only have a few days left for the fiscal year (which doesn't end until March 31) but I was at the end of my rope, so heck with it. I lay on the couch pretty much all day and it was AWESOME. I haven't taken a day off where I didn't have to do anything in, jeez, months I guess.

This morning I'm feeling pretty good--I woke up at 5:30, 30 minutes before my alarm, and was rested enough that I got up and puttered around instead of going back to sleep. And I got to take my shower without a little helper pushing me into the shower and shutting the door for me, unlike most mornings. So today it's back to the grind but it feels much less grindy.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
2010-11-01 08:04 pm
Entry tags:

Another reason I like my asthma doc

She wants me on steroids for serious, but doesn't want me on them constantly.  The inhaled steroid she put me on, Alvesco, has been helping a lot (I blew a 500 on the meter, above my former-best of 450), and she said she wants me on it for two more months, then she'll do another breathing test and start stepping me down, and I shouldn't need it in the warmer weather, basically just for fall and winter.  But I will need it every fall and winter.

Then she asked about my rhinitis and what I take for it (just pseudophedrine--I gave up on the Flonase because of the smell) and she gave me Nasonex, which is a scent-free nasal steroid.  For that one she said just take it for three weeks or so when I'm having a problem, and then go off it again.

It's still not awesome for my bones to be taking all this on top of depo-provera, but right now lungs > bones.  This combo of long steroid-free periods combined with occasionally beating my tissues into submission with shortish courses is ok by me.

Since I was raised Catholic I am already thinking of steroid-free time as "ordinary time."
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (collage1)
2010-10-07 09:49 pm

Doctor's verdict

So, I had a skin test for a whopping pile of food allergies, including the ones I'd had identified through blood testing 12 years ago or so.  I hadn't been to my current allergy doc in about 8 years, but she did my immunotherapy shots for cats/dust mites/mold/trees back then, which worked wonders.  And she's Charlie's best allergy doc and is also starting to work on my husband.

When I got to the office I noticed that the sign on the door says "Allergy/Asthma."  My primary care doc is managing my asthma, but it's been haywire all month, so I figured I'd mention it to Allergy doc and see what she thinks.  Before we really even started talking about it she heard me cough and said "oh, you have the reactive coughing-type asthma.  You need to be on a daily inhaled steroid."  Listening to my lungs and such confirmed that, but she said I probably only need to be on it during the bad seasons (fall & winter--cold & dry are bad) and can go off it in the spring, since I don't have pollen problems any more.  

Then she stuck me with a bunch of stuff for testing--everything I have on my prior list as a positive (milk, egg, chocolate, coffee, garlic), everything I have suspicions or worries about now--wheat, soy, lemon, etc.  I included anything I eat really regularly even if I don't have a problem with it--shirimp, for instance.

Result shows I'm allergic to only four foods.  Soy, cinnamon, lemon, orange.  Three of those are likely ingredients in my more-than-daily Diet Coke; the fourth, Soy, is an ingredient in everydamnthing, including random stuff like Reese's Pieces.

But what about all the other stuff that makes me sick?

For the wheat/reflux problem, she said to see a gastoenterologist, because it's a real issue, but not an allergy.

For chocolate, milk, egg, and some others, she said it's likely I have a condition called vasomotor rhinitis, which is where certain foods--either those with vasodilation effects, spicy foods, and very hot or cold foods, cause vasodilation that leads to congestion, runny nose, and asthma attacks.  She said her father had this condition and would get asthma from washing his feet in cold water. Certain foods he could eat in the day but not near bedtime since asthma is worse at night.  She said if her hands get very cold, her nose runs, but she has no allergies. This matches up to my symptomology so well it's alarming.

So her instructions are, 1. get on the inhaled steroid right away, because my asthma is not well controlled. 2. Totally stop eating soy, cinnamon, orange, and lemon. 3. Once the steroid builds up--about 4 or 5 days--experiment with eating milk, etc and see what happens, with the understanding that they will probably cause some problems. Her take is basically if they don't cause asthma, but just a runny nose, I can eat them; just expect to have a runny nose. 4. controlling the asthma & reactive airway may help with the reflux/wheat problem and other upper GI problems; if it doesn't see an innards-doctor about it to figure out if there's a way to help that other than continuing to eliminate wheat.

I'm a bit boggled. It's nice to know that I don't have as many allergies as I thought, because I was beginning to be fearful about the overall state of my immune system. On the other hand, I still can't eat any of the stuff I've been not eating, at least not until many experiments have been done, and avoiding soy is going to be a bitch and a half. However, it seems that I might be able to eventually have occasional chocolate, as long as my asthma is well-controlled and I get a schmancy organic type that is soy-free. Which is certainly a fine thing to contemplate.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (zombatar)
2010-06-10 07:56 am
Entry tags:

Stupid lungs [whining]

I can't find my peak flow meter and the mold spore count around here is like eleventy-zillion, and I've been coughing since last night.  Since I have coughing-variant asthma instead of normal-variant wheezing asthma, it's hard to be sure when I'm having an asthma attack, since coughing can mean all kinds of things.  If I had my peak flow meter, I would know which medicine to take and how often, instead of just going eeny-meeny-miny-mo over my two inhaler options and guessing.  If I had enough wind I could go pull out all the containers by my desk and see where I put the fracking thing.  It's not terrible--even when I'm doing badly I blow above 300 on the meter--but it's damned annoying.  Cough cough. Whine.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
2009-06-26 01:08 pm
Entry tags:

Three things make three-fifths of a post

1. I will not be going to [livejournal.com profile] think_galactic  this weekend, boo.  Persistent sinus infection is persistent, and so a weekend of rest is in order.

2.  The Chicago chapter of the Society for the Appreciation of Train Schedules* had the pleasure of meeting up with Jo Walton for dinner earlier this week.  As I was talking with one person I heard Jo say to another person, "Human society is basically good,"  which surprised me a bit. Once I tuned in properly, however, it emerged that she was talking about programming for a future con, and saying that the "Human Society" track was pretty well set for panelists, i.e. basically good.  Heh.

3. I have an asthma action plan!  I have singulair and xopanex and a peak flow meter.  I have a followup appointment in a month to see how the singulair works for me--since my asthma is mostly allergy-triggered, I am hopeful that I won't need to step up to a flovent or advair, but if I do, the clinic will hook me up.  The peak flow meter is a thing you blow into to measure your air flow.  For a person of my height/weight who does not have asthma, the expected number is about 630 on a scale of 800.  Right now mine is 400. Whee!  Really I'm supposed to measure against my own personal best, not that 630 number, but I have to wait until the sinus infection is gone to get a good measurement.   The meter is a cool thing, because it gives me an empirical basis for determining if I'm in distress, rather than just how I feel.

*me, Neil Rest, [livejournal.com profile] beamjockey , [livejournal.com profile] ashnistrike and Nameseeker.  Jo's train was rather late and Nameseeker's train was elusive.

marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (charlie2)
2009-06-14 07:02 pm

Yum, Albuterol!

Charlie is finally feeling better, thanks to motrin, tylenol, rooibos tea, some kind of steroid they gave him at the hospital, and an *HOUR LONG* nebulized albuterol treatment.  This means that mommy and daddy each spent about half an hour inhaling albuterol while trying to keep the little schnozzle pointed at the face of a squirmy baby (who will not wear a mask; masks are for chewing on! Nom nom nom!)  My airways feel great but my heart is a little racy.  Probably my imagination, since I take albuterol via inhaler pretty often myself..anyway, we're home now, and he does not have pneumonia (he has a viral thing*, they think, that caused a reactive-airway flareup), and he's not barfing on me, at the moment anyway.  So the weekend is a win, except for the parts of it that were supposed to involve getting stuff accomplished. 

*a no-fault viral thing, dear ones.