Saturday, November 25, 2006
He was tenacious before, now he's downright impossible when he gets his mind set on something. (For example, he started self-feeding on Thursday...now I'm not even "allowed" to feed him.)
Good thing he's still so snuggly and cute!!
And yes, I can bitch and moan about it til the cows come home, but ultimately, I'm happy the medication exists that can help my child BREATHE.
Monday, November 20, 2006
By the time we got to her office at 2:30, he was hardly coughing anymore. By the time we left, he was singing in the car all the way home.
Still doing nebs every 2-3 hours today, and we'll reduce to every 3-4 tomorrow.
But first, we'll see how tonight goes.
BTW, did I mention I've barely seen my office in the last week? I've been working from home since Iggy got sick last Monday. Only *slightly* stir crazy. :-)
- He was born in respiratory distress and spent his first 24 hours in the NICU
- He turned blue when he was about 4 months old (he was fine)
- He has had three illnesses involving serious coughs in the last 9 months, including the one last week
And to my friend who was asking about an alternative to Pulmicort, ask your doctor about Flovent and QVar, which are both in metered-dose inhalers (MDIs) rather than administered via nebulizer. Much faster, easier, and child-friendlier.
So...yea. Once again, I'll be rushing home from my plate of side dishes (hi, lifelong veg) to administer nebulizer treatments every 3 hours around the clock.
But really, I am thankful. I'm thankful that after over four years of dealing with asthmatic babies, I finally feel like I know what I'm doing. I fearlessly administer Xopenex at the first sign of a cough, and add DuoNeb every 3 hours if things start going south. I no longer feel compelled to go to the ER every time someone's cough spirals out of control. I don't even need to see the PP *every* time one of the boys is sick.
Don't get me wrong -- I still go when we need to. I just don't PANIC anymore.
I'm also thankful that not one of my boys has required hospitalization since 2002. Let's hope I can be thankful for that again next year. :-)
...one final note: Apologies for the two month hiatus. So busy with work and three kids, and big B's Asperger's Syndrome has consumed a good deal of my maternal concern. There may be another blog in that one.
Friday, September 15, 2006
Oz -- He's 2-1/2 now, can you believe it? GORGEOUS, too. Anyway, he's coughing at night and has been for a few weeks. He's had a goopy, green nose on and off for 2-3 weeks now. He's also been up 2-3 times per night pretty much all summer. Now that I'm typing this out, I'm feeling pretty idiotic for not having taken him to the peds. pulmo already. I'll get right on that.
Iggy -- 9 months next week. He's getting so big so fast! (SOB!) He's had a cold or two, but overall, he's been doing great. I've stayed off shellfish and kept him off dairy, and we haven't seen hives since. We'll do allergy tests at his next checkup.
In other Iggy news -- still not sleeping through the night, so I'm up with him at 2, Oz at 4, and dragging through my days. It's painful. He is babbling like mad, sitting up on his own, and ready to crawl. He's very cute!!!
My predictions for our next PP visit: Bryn and Oz both go on Flovent 44. I'm also guessing that Bryn will, once again, not successfully complete a PFT.
We'll see, soon enough!!
This year's just a difficult to kick off for me. I resolved (yes, I actually make resolutions at the beginning of the *school* year) to get up earlier, work out for 20 minutes, and then get the kids off to daycare before 9:00. But with Iggy still not sleeping through the night, and Oz suddenly waking up with him, it's hard to face the still-dark morning. And with the boys adjusting to their new teachers and curricula, plus my biggest work project due in less than two weeks...I'm cutting myself some slack.
There's a new hurtle, too. It's the reason I haven't blogged in over a month. If you've been with me for the last 2-1/2 years, you know I don't usually stay away from the blog for that long. If you something was wrong, you guessed right.
Not long after #1 son's 5th birthday, we managed to get in with the developmental pediatrician. She was a terrific doctor -- wonderful with little B, and wonderful with me, as well. Our appointment lasted more than three hours, during which time I was interviewed about little B, and he was given a bunch of activities to perform -- drawing, writing, building with blocks -- and interviewed, as well.
The school district's preschool disabled program and B's child study team had arranged the appointment, and they were paying for it. They wanted a diagnosis so that they could provide additional services for him. I questioned whether he needed anything more than the great services he already had, which included PT and OT, but was happy to schedule the evaluation.
In terms of a diagnosis, I expected to hear that he was dyspraxic, or that he just had poor gross motor skills, and he'd outgrow this. Or that somehow, as a result of his asthma or years of inhaled steroids, he'd developed some unusual sensory issues, but that he'd outgrow them.
What I wasn't expecting was a diagnosis of Aspergers Syndrome.
Children don't outgrow Aspergers. In fact, Aspergers becomes harder to manage as they get older, becuase that's when they begin to realize that they're not like other kids. Or at least, that they're not treated like other kids.
It had been suggested years before that little B had Aspergers. When he was 2 and obsessively opening and closing cupboard doors, even we thought he might have it. But every doctor under the sun ensured us that he would be fine, he made great eye contact, he was very social, there was no way he was on the autistic spectrum.
So I was pretty well blindsided on August 10.
Aspergers is not a death sentence. Even in my horrified state, I was fully aware that nothing had changed. B was still B -- the same wonderful little boy he'd been five minutes before his diagnosis. Still gregarious, sweet and smart as ever.
The drive home was a challenge -- I had to quickly convince myself that the diagnosis was a positive. It was a tool that would both help us understand B's "quirks" and enable him to receive more services through the school district.
Why the rush? Because my husband would be a lot slower to take on this viewpoint. He would need the time to grieve the loss of his perfect goalie, his future Toronto Maple Leaf. I had to be the pillar. I had to be positive or he'd pull me into the sorrow with him -- and for B's sake, I wasn't going.
So, here we are, a month later. We decided to keep B out of Kindergarten this year, at the suggestion of the Child Study Team. He'll stay in daycare (yes, I really do have three kids in daycare) and continue to do the preschool disabled program 4 half-days per week through June. We'll take things one day at a time and see where we go from there.
It's a sad September, partially because he's NOT in Kindergarten, and in my eyes, he's ready. But I recognize that have to trust the doctors and the CST better than my eyes.
It's also sad because now, I've got to keep a secret from his new friends, and that's just not in my nature. But it's important that his friends - and their parents - see him as an equal and don't treat him any differently.
For now, his social skills are pretty normal. He makes friends easily, and even though his teachers a daycare (who, by and large, are not in the know) feel there's something special and different about him, it's something they see as a positive -- a sweetness and naivete that sets him apart from the other children.
My eyes are on the future. My feeling is that for B, is as bright and as promising as ever. I just have to keep everyone around me believe that -- B, most of all.
Wednesday, August 09, 2006
We started solids at six months, introducing a new food every week. First rice cereal, then bananas, then apples, pears, peas, yogurt and carrots. Couldn't tell if it was the carrots or the yogurt, but naturally, assumed it was the yogurt.
The peds agreed it was probably the yogurt, but I put him on a reduction diet anyway. Bananas and rice cereal only since Sunday. (Poor guy's probably going HATE bananas.)
But the hives were back this morning, so I took him to the peds.
Thank God I'd put him on the reduction diet...I suddenly realized (DUH) that it was something I was eating, what with me nursing and all.
I had lobster on Saturday night, and then again for lunch on Wednesday. Pretty crazy...I'm a 20+ year vegetarian, but I occasionally weaken and indulge in crustaceons. It's a rare week that I have lobster twice!
So...it seems Iain might be allergic to shellfish.
(And that'll teach me to stray form the course of vegetarianism, right? Is this some conspiracy by Peta? Do they do this to all offending veggies?)
Could be worse -- I have a girlfriend whose son breaks out in a rash every time she eats peanut butter. I can't imagine life without peanut butter. I'm far too lazy a vegetarian to live without it.
Sunday, July 16, 2006
My kids don't wheeze audibly, so it can be hard to tell when their asthma's acting up. B's getting older, so he can tell me - but Oz can be a little mysterious.
Then it occured to me: I've never had a non-asthmatic toddler! I've rarely (if ever) had a preschooler who *just* had a cold.
So, based on conversations with friends and my own observations, here is how you can tell your kid may be having an asthma attack (or "flare," if you're using the new, non-violent lingo). As always, CALL YOUR DOCTOR if you suspect your child's asthma is acting up:
1. Regular kids with colds usually act like normal kids; they just have runny noses and coughs. If your toddler has a cold, is crying constantly (or like mine, begging to be carried everywhere), whining like mad, and /or not eating, it may be more than a regular cold. (Of course, it could also just be a sore throat or ear infection - make sure your doctor checks for those, too.)
2. Your child has a dry, hacking cough that disappears as quickly as it appeared.
With Oz's recent flare, he was miserable for 48 hours. His cough came on suddenly, but after two days of alternating DuoNeb and Xopenex, it literally dissipated (along with his whining) over the space of a few hours.
3. Finally, your child has a cough that responds miraculously to albuterol or xopenex - particularly after nothing else has worked.
Again, this is non-scientific, and I'm NOT a doctor. I've got nothing like a medical degree. I thought these tips might be helpful to others whose kids have the elusive variety of asthma my kids seem to have -- but if you think your child might be flaring, definitely call you doctor. I can't reinforce that enough.
Friday, July 14, 2006
Not sure if I mentioned it before, but the doctor seems to think the rash may have been caused by his Singulair. Sure, he's been on it for nearly three years, but he was on Flovent for three-and-a-half years, and since corticosteroids like Flovent are immunosuppressant, they suspect the Flovent supressed the reaction to the Singulair. As a result, the rash appeared when we tooke the steroids out of the mix.
In other news, I'm taking Oz to the PP today. He's not doing too well. He started coughing Tuesday, so I kept him home and nebbed every four hours. Yesterday, he seemed better, so I nebbed in the AM, and sent him to school with his albuterol MDI.
He was okay yesterday, but he did wake up from his nap coughing. The daycare called and I had them give him an extra dose of albuterol, which seemed to help. He was happy enough when he came home, and he slept relatively well.
He was a bit rough this morning, but that's usually a bad time for my kids. I gave him a neb and some Dimetapp, then we ran a few errands before landing at daycare. By the time we got there, he was so sad and clingy, I knew I'd have to turn around and take him home.
Now he's sleeping (totally uncharacteristic) and he's definitely a little bluish around the eyes and very goopy. No fever -- just the dry cough.
It could just be a cold, but we've only been off the Flovent for two weeks, so I'm not taking any chances!!!
Quite a way to spend my 35th Birthday. :-(
Sunday, July 09, 2006
At least the congestion gave me an excuse to start albuterol.
The worst part is that we've scared him with our concern. He was uncharacteristically teary and melancholy tonight (more from exhaustion, I'm sure) and he asked me, "Am I going to be alright, Mom?"
So, add guilt to my concern now.
Honestly, it's hard to not be concerned -- I'm damned near panic, quite frankly. He really looks THAT bad. All I need is one good wheeze, and I'm off to the ER.
Saturday, July 08, 2006
Here's the bad news: Bryn looks AWFUL. It may just be what the dermatologist determined was "steroid acne", but he's get a red rash around his eyes, on his nose and on his cheeks and chin that looks terrible! His eyes are red-rimmed, as the rash or acne is actually on his eyelids, too, and bloodshot. He's really pale, too.
He looks apalling, but seems fine otherwise...maybe just a little lethargic.
I'm so worried about him. I've called four doctors (yes, really) and they all think I'm nuts. Our PP and her nurse-practioner are both on vacation (the nerve of them, vacationing at the same time! Didn't they know I'd need them?), so I've had to speak to two other doctors in the practice who think I'm a looney hypochondriac who wants her kid back on steroids. We actually *saw* our pediatrician, who was baffled but largely unconcerned, and a dermatologist who thought it was steroid acne (as mentioned above).
Any thoughts? This all started just as we were tapering him off the Flovent. I feel like we're working up to a major blowout flare. And he really looks so bad that I'm considering a trip to the ER.
Ozzie will stay off indefinitely; B will go back on a low dose for the winter. We're so happy that they've been healthy long enough to go drug free. Yea!
Wednesday, June 14, 2006
THURSDAY, June 8 (HealthDay News) -- Adding to the ongoing controversy over a popular class of asthma inhaler medications, a new data review suggests the drugs may be dangerous.
Compared to placebo, the "long-acting beta-agonist bronchodilator" inhalers (which include Serevent and Advair) more than tripled users' risk of asthma-linked death, according to the report. Risks of hospitalization and life-threatening complications also went up.
"These agents should not be used," concluded lead author Dr. Shelley Salpeter, a clinical professor of medicine at Stanford University and a physician at Santa Clara Valley Medical Center in San Jose, Calif.
However, another doctor said the drugs are still safe enough to use -- although they should be prescribed carefully.
Long-acting beta-agonist bronchodilators are designed to help relax airway muscles and improve breathing. They include popular medications such as Serevent (salmeterol) and Advair (which combines salmeterol with a steroid). The drugs are reportedly expected to gross nearly $7 billion in sales to consumers this year.
Another family of bronchodilators, called inhaled anticholinergics, are "very safe and effective," Salpeter said. But long-acting beta-agonist drugs have been controversial. Last year, the U.S.
Food and Drug Administration issued a warning that the drugs could worsen symptoms and even lead to death.
In the new report, Salpeter and colleagues launched a broad review, or "meta-analysis," examining the results of 19 asthma drug studies involving nearly 34,000 participants.
The findings are expected to appear in the July 4 issue of the Annals of Internal Medicine.
The experts found that, compared to placebo, long-acting beta-agonists boosted the risk of asthma-related hospitalization by 2.6 times and the risk of life-threatening complications by 1.8 times.
The risk of death rose by 3.5 times, although the researchers caution that the very small number of deaths recorded in the studies limits the "reliability" of that number. Even so, the findings suggest that salmeterol could be responsible for 4,000 of the annual 5,000 asthma deaths in the United States, the study authors said.
"The take-home message is that long-acting beta-agonists worsen asthma control and increase the risk for moderate asthma exacerbations, life-threatening asthma exacerbations and asthma deaths," Salpeter said. "These can occur without any warning from increased symptoms, which make them especially dangerous," he added.
Not so fast, said the author of a commentary accompanying the report findings.
While they have dangers, the drugs can still "be helpful to some people," said Dr. Jeffrey Glassroth, professor of medicine at Tufts University in Boston.
If the drugs weren't used, "we might prevent some adverse reactions, but we might create as many, or even more, problems in our asthmatic population," Glassroth said. "What I would like to see is more rigorous adherence to the current guidelines that suggest they aren't first-line therapy. There are other things to be used first, and, for many patients, that may be all they need," he said.
Meanwhile, research findings suggest that some groups -- such as African-Americans -- might be at especially higher risk if they use the drugs, he said.
It's unclear how the drugs work, and it's not known why they can be dangerous for some people and not others, Glassroth added, although genetic factors may play a role.
The brief summary: The neurologist thinks they're all nuts. Apparently these things are "soft markers" for autism, he's completely fine, and the regimen of Physical and Occupational therapy he's currently getting through the school system is sufficient.
I think she was just glad we weren't looking for a prescription for Concerta or Ritalin! I think the docs around here are pretty sick of prescribing that stuff...
Anyway, we're still going to have to take him to another Neurologist, as the school system will be sending him to theirs, but needless to say...we're relieved and pretty optimistic!!
I called and checked on him in daycare yesterday repeatedly, even though he'd been okay during the day -- just rough from late afternoon through early AM. But I was ready to pick him up if need be, and I'd left instructions to give him albuterol twice during the day.
I called the peds. pulmonologist yesterday just to give them a "heads up" and make sure I was taking action appropriately. I was sure I'd have to rush him over there this morning.
But, in typical asthma flare fashion, he was completely fine by the time I picked him up yesterday. Not a single cough the entire evening.
How weird is that? Monday night, he's coughing his head off. Tuesday night, nothing.
I'll taper off the rescue meds gradually, just to be safe!
Survey: 1 in 3 Fatal Asthma Attacks Involves a Child With Mild Form
VIENNA, Austria — One in three fatal asthma attacks worldwide involves a child with a mild form of the disease, and nearly half of all parents are unaware of the death risk, according to a new global survey presented Wednesday.
The European Academy of Allergology and Clinical Immunology said the findings exposed a critical information gap between doctors who treat asthma and the parents of youngsters diagnosed with it.
"Many patients with asthma underestimate their disease severity and overestimate their degree of asthma control," the academy warned in the report issued at its annual conference, held this year in Vienna.
Dr. G. Walter Canonica, of the University of Genoa in Italy, said the survey underscored how effective treatment "is a shared responsibility requiring continuous communication among physicians and children with asthma and their parents."
"One place to start is in the area of treatment side effects ... in many cases, parents are not able to identify these side effects," he said.
Experts said that with each decade, the prevalence of asthma increased 50 percent. Worldwide, more than 300 million people are afflicted and more than 180,000 die of the disease each year, the Global Initiative for Asthma says.
Asthma is a chronic lung disease caused by airway inflammation, and certain stimuli cause the windpipe to become obstructed. Symptoms include wheezing, coughing and a tightened airway that causes shortness of breath and can be life-threatening. Allergies are responsible for more than 50 percent of asthma in adults.
Treatment for the condition costs society more than tuberculosis and HIV/AIDS combined, the European Academy said.
Its survey of 5,482 asthma patients, their doctors and the parents of young sufferers focused on cases in Britain, Canada, France, Germany, Italy, Japan, Spain, Switzerland and the United States. The academy called it the first sweeping global study of what parents do and don't know about the hazards of asthma.
Many parents cut back on treatments such as the use of drug inhalers when their children suffer side effects, the study found. Others switch asthma medications or discontinue treatment altogether, it said, cautioning that doing so "can be dangerous and greatly impact health outcomes."
Reducing or stopping treatment usually means a child's condition worsens, the report warned.
"More than three-fourths of children who are not compliant with their asthma treatment all the time experience at least one of the following: increased symptoms (66 percent), limited physical activity (48 percent), nighttime awakenings (46 percent) and more frequent asthma attacks or exacerbations (40 percent)," it said.
Those who don't follow doctors' orders end up with 38 percent more visits to physicians and are 14 percent more likely to wind up in an emergency room or hospitalized, the survey said.
Experts said that although 59 percent of parents say they comply with their doctors' instructions all the time, only 9 percent of physicians believe it because the child's symptoms are not controlled. And parents and doctors both complain that the other side doesn't initiate discussions about treatment and side effects.
"Patients with asthma, parents, and the physicians who treat them should pay close attention to the findings from this survey, which show that the way we currently treat asthma is unsatisfactory," said Dr. Erkka Valovirta, a pediatrics specialist at Finland's Turku Allergy Center.
Thursday, June 01, 2006
Let me know what you think. I'm hoping it's not another scam site selling liquid oxygen or something ridiculous like that. It would be cool to have another useful, unbiased asthma site in the universe!
Thursday, May 25, 2006
When I asked why, I was told that in the roof repairs currently underway, they were using a glue that produced an odor that "smells really bad."
It wasn't until I went to get the boys' things that I realized the place smelled like it had been freshly spraypainted from floor to ceiling! "Smells bad" was the understatement of the decade.
And of course it triggered the boys' asthma, only a little. I felt badly -- they'd been really, really cranky that night, and I'd assumed it was because they'd missed a snack in all the hubbub. When I realized they were both working pretty hard at breathing in their sleep, I felt really bad! I 'd been a little short with them (three cranky kids under the age of five...you tend to be a little short occasionally!). I hadn't even thought it could have been their asthma/RAD acting up. Duh.
Wednesday: I have to say, I'm pretty psyched to finally be in the office three days a week. My plan is to go in Monday, Weds., Thurs, but I have an out-of-town, work-related party today, so I worked from home with Iggy, then dropped him with my Dad at 3:00 so I could make the 4:000 event. I'm happy. It's a gorgeous day, and I'm meeting my CEOs and some co-workers for dinner on the porch of a Victorian hotel. I'm wearing a long flowy skirt and dreaming of lemonade.
I'm about 25% of the way there when my mobile phone rings. It's the daycare. They're closing early because of the fumes. Can I please come get my kids?
I pull over and try to call my husband, because I *really* don't want to miss this event. I *really* don't want to turn the car around and pick up the kids instead of sitting in the sun with my coworkers.
And I'm EXTRA pissed off, because I'd specifically mentioned to the director that I was concerned about the odor because of the kids' asthma, and she assured me all was well. (I also told #1 son that he should ask for his albuterol if his chest hurt or if he was coughing. He's pretty reliable with stuff like this, despite his young age.) I had also spoken to the area director that morning, who neglected to mention the persistence of the fumes.
So I eventually get B on the phone, and he does leave early to get the kids, and MAN is he mad! He's especially mad because he's found out that the center was supposed to close at 3:00 -- and we didn't get called til 3:40!
Do you think they should have called the asthmatic kids' parents first? There definitely are enough of us!
And while I did make it to my event (yea!) I did arrive home to the terrible news that center would be closed today and Friday. :-(
So much for three days in the office THIS week.
The daycare did call the Department of Health, and apparently everything is safe, but they felt better airing out the fumes.
And PS, Little B is coughing tonight.
Do you believe this nonsens. I swear, Icouldn't make this stuff up if I tried!
Sunday, May 21, 2006
Can't say I'm happy about that. On the most superficial level, I never would have (a) had another baby or (b) bought a new house if I EVER thought I was going to have three kids in daycare at the same time.
On a slightly deeper level, I'm sad because he's SO bright, I really believe he's intellectually ready for school. But his CST is so concerned about his arm-flapping, toe-walking, and impulsivity, they really think we should wait.
What helped us make the decision to wait (we were so against it!) was talking to other parents. Since we are in one of the nation's top school districts, it seems things have gotten very competitive around here. Lots of parents whose kids were born in the summer (like B, an August baby) wait until the following year to start their kids in school. Which means that not only might B be the youngest if he starts next year, he'll be the youngest by FAR. And apparently, kids around here are dating and fooling around by the sixth grade (was that vomit I just tasted?) and the age/maturity difference between B and the others might be so profound, that the social damage could be irreparable.
And nevermind that in this town full of over-achievers, being 10-11 months younger means he'd have to work that much harder to keep up academically, too.
Seems parents of kids without learning disabilities make the decision to wait - sometimes at birth!- so we'll do it while we can. Once we start public kindergarten, there's no going back. At this stage, he won't realize what we're doing, and he's happy to stay at his daycare another year with Oz. (Iggy will be there too in the winter.) If we held him back once he was in the public school system, he'd realize it -- and so would the other kids.
The plan for next year is to put him the Kindergarten class at his daycare (it's certified, but I doubt it's as good as the public school) but send him to the preschool disabled program he's currently attending. Right now, a mini bus picks him up at daycare and takes him to and from the program in the afternoons. Next year, it will be the same.
The CST said he had really made improvements since starting the preschool disabled program in January. Their feeling was that he should have all or nearly all of his problems ironed out by next year.
Their also sending him for a full development evaluation at the great hospital nearby. They're concerned about the physcality of his issues -- the arm flapping, toe walking and head shaking, which all look like autism. He's clearly not autistic, but they'd like him to have an eval. just in case.
Fine by me. I've been trying to get an appointment for an evaluation there for MONTHS and I can't even get a return phone call! I'm taking him to a pediatric neurologist next month at the other nearby hospital...but I'm really glad they're getting us in with other doctors.
I absolutely don't think B is "on the spectrum," but we'll see.
We'll be going to the PP soon just for a check up for both boys. We'll see how that goes. I'm hoping to get Ozzie off the Flovent for the summer (although with the grunting, I don't see that happening) and big B down to the 44. Considering he was on Flovent 22o less than a year ago, 44 is an ambitious goal!
I'm also supposed to take Baby Iggy for a chest Xray. Not sure if I'll do it. I guess I should...what with respiratory distress at birth, a possible case of pertussis and then his turning blue. And he's barely five months old!!! I just hate to do it, not only because of the radiation, but it is such a pain in the ass to take your baby for an Xray at a major teaching hospital. It takes hours, it's horrible...there's just nothing nice about the experience. Maybe they'll let me go to the imagine center here instead.
Anyway. There's your update.
Monday, May 08, 2006
But Oz's asthma seems completely different. I feel like I'm learning asthma all over again. All the doubting and denial, the wondering if I'm overreacting...it's all so exciting and new again. And I don't mean that in a good way.
Tonight, as with many nights before, Oz was very fussy at bedtime. He wasn't coughing or wheezing as far as I could tell, but he got really whiney and cranky when I put him to bed. You'd think that was just a normal two-year-old thing, but it's not something he habitually does. Usually, he'll just happily climb out of bed and silently find something better to do. (I've found him playing with the glider in the nursery, "reading" in my bed, etc.) He doesn't usually CRY.
When I got into his bed to console him, he was grunting again. When I looked at his belly, it looked like he was retracting a bit. Hard to say - I'm no expert on retractions. But it looked like the skin was sucking in between his ribs a bit. And his breathing was definitely labored.
I wasn't sure...I don't always trust myself when it comes to my kids' asthma. After all, I didn't go to medical school. But even though I half-doubted what I was seeing - I mean, he's TWO, who's to say he's not going to start suddenly crying at bed time - I got out the albuterol MDI and Aerochamber.
Sure enough, he was breathing more comfortably within minutes...and sound asleep.
Guess I'll be calling the pediatric pulmonologist tomorrow.
http://everydaykidz.com (Astra Zeneca: Pulmicort)
http://asthmamatters.com (Novartis: Xolair)
http://www.asthmacapitals.com/ (Seems to be related to the Xolair site)
and this non-pharma one:
http://noattacks.org/ (EPA/Ad Council)
And of course, my favorites:
Check them out -- there's not much new to learn at this point, but refresher courses for parents and better ways to explain things to your kids are always a help.
Sunday, May 07, 2006
Anyone know if this is a regular asthma thing?
He's also been especially cranky upon waking up and a little whinier than usual. But...he's also two years old.
And, can I just say, he is absolutely one of those two-year olds who would shove a sandwich into the VCR. It's a good thing he's sooooo cute.
Wednesday, May 03, 2006
According to the article I read: "Ben Affleck and Jennifer Garner's daughter Violet Affleck was rushed to a Century City medical office because she was having trouble breathing. The 4-month-old was then treated and tested for asthma before being released an hour later, said an insider."
Tested for asthma. Really? How did she do? I didn't realize there was a definitive test for asthma! I'll have to alert my pediatric pulmonologist. I'm sure she'll be pleased to hear the news. Gosh, when I think of all the time we've wasted on pulse oximeters, chest x-rays and peak flow meters. And all this time, there was a test!
Maybe you have to be an A-List Celeb to get one. Sort of like a scheduled C-section (for no reason other than to accommodate Mom's busy schedule).
Oh, and I loved this comment on that post:
"Asthma can be very scary, but it is also very treatable if it not too severe.... The good news is if she does have asthma, the odds are extremely good that she will outgrow it by the time she is 4. Childhood asthma is much more common than most people think. Hopefully, she will be okay and all will be well!"
And it's all good ..until the part about outgrowing it by age 4. Another bit of good news for me! Who knew that we could have taken #1 son off his Flovent, Singulair and Nasonex eight months ago, when he turned 4? Think of all the time and money we could have saved....
Sorry if I'm being uncommonly bitchy, but ignorance REALLY pisses me off.
Monday, May 01, 2006
I didn't completely panic, because he was still fussing and breathing well. But I did put an emergency call in to the peds, who told me to bring him right in.
He was fine by the time we got there, although I was (not surprisingly) a mess. The doctor told me this would probably never happen again. But she said that if it did, it would happen soon, within a few days.
So again, not surprisingly, I haven't slept much this weekend.
Also, Ozzy was coughing all day Saturday, but seemed to do well after lots of albuterol. This morning, though, he was grunting a lot while he was sleeping. I started the albuterol again, and I'm calling the PP now.
What a rough few days!!!
He's an astoundingly smart, outgoing kid. He's articulate, friendly...at age 4.5, he's writing, very close to reading, adding small numbers. And he's nice and polite, too.
The problem is that he's got problems with his fine and gross motor skills and motor planning. He has a hard time holding a pencil, and he tires easily when he's running or climbing things. But he's great at building towers of blocks and he loves to draw things like snakes and spaceships.
He also has problems that, while less inhibitive than the motor skills problems, confound his therapists. He flaps his arms when he's excited. He walks on his toes a lot of the time. He has low muscle tone. These, to me, are quirky things, but they're also some of the visible manifestations of autism -- although my guess is that my son isn't on the spectrum.
So he has these problems, which we've only identified in the last six months or so. (He's always flapped his arms, but we had no reason to think he wouldn't outgrow it.)
Now, as we draw to the end of the school year, his special preschool (which is part of the public school system) is recommending that he wait to start Kindergarten.
#1 Son does have an August birthday, so holding off on Kindergarten a year wouldn't be unheard of. Lots of parents do it. But I do have some concerns about going this route:
- He's already writing, adding, and ready to read. Is it fair to condemn him to another year of colors and shapes?
- Public school = free. Another year of daycare = $10,000. I hate to bring that up, but I do have #2 and #3, both of whom will be in daycare. It's a little financially dehabilitating, quite honestly.
- Will another year of special preschool really help? Or would a year of kindergarten with PT and OT be just as (or more) effective?
In answer to the third question, I've been attemtping to schedule an appointment with a pediatric developmental specialist.
For three months now, I've been attempting to schedule this appointment.
The peds. dev. specialist I've been trying to get him into at the big regional hospital my insurance company prefers (and I love) is so popular, I can't even get a return phone call. If they ever do call me back, I'll have to wait six months for his appointment.
So I tried the big, regional hospital around the corner, which both my insurance company prefer slightly less. Here's how that went:
- Dialed, got auto-attendant
- Option 2 asked me to leave a message (ha! cos I've had such luck with that at the other hospital!) or hold for an attendant. I hold
- Six minutes later, I ask for the doctor suggested by my insurance company suggested, who is a pediatric development specialist.
- I'm informed that this doctor hasn't been with the practice for four years, and I'm referred to another doctor.
- Doctor #2 is one I've been asked to avoid by my friend, and anyway, she has no appointments available until AUGUST
- The attendant recommends a pediatric neurologist -- who isn't on my plan
- The attendant recommends another pediatric neurologist -- who *is* on my plan
- I hold for about ten minutes while she finds an available appointment
- I make an appointment for early June
- I smile as the attendant passively dismisses my request to be put on a cancellation list
As if having an asthmatic child with "preschool disabled" classification wasn't enough. Sheesh!
Monday, April 24, 2006
The rest wasn't quite what I expected. For starters, his lungs really did sound clear. This wasn't so surprising, his cough had really tapered down to nothing -- thank God! It had been two weeks since it started, after all.
She did, however, think the cough he had was Pertussis, aka Whooping Cough. She figured he had a mild case, since he'd already had one course of the vaccine. But apparently, it's been going around, and the way I described his cough sounded about right to her.
She asked if I'd given him albuterol for the cough. I explained that, as Iggy is FOUR MONTHS OLD, I wouldn't presume to give him albuterol. Especially since he'd never been seen by a pediatric pulmonologist before! She said that, given our family history, it would be alright to do so. Since his airways are still very, very tiny (AWW!), he'd only get as much as he needed if we administered the stuff via nebulizer.
I'm glad she trusts me to administer medications to my babies like that, but I still think I'd prefer to call her and/or have her SEE the baby before I go and administer an emergency bronchodilator to an infant.
As for the chest Xray, I may well skip that. I'm not sure he needs it at this point.
I'm almost excited to see what Ozzy's allergic to, on the other hand. There's so much he won't eat, I wonder if he's actually allergic to some of those things. That's how #1 son was. He wouldn't eat eggs after they made him throw up once or twice. Turns out, he's allergic.
I'm betting Ozzy's slightly allergic to grapes...and I'm curious to see what else! Bets, anyone?
One last bit of good news: I'm bringing Li'l B and Ozzy in next month for checkups, and there's a good chance we'll be able to lower B's Flovent to 44 (awesome, considering he was on 220 about a year ago!) and take Ozzy off the stuff completely for the summer. Yeah!
Friday, April 21, 2006
He still has a trace of that cough, 2 weeks later, and I'd rather be safe than sorry. I mean, the kid's not even four months old yet!
We went to the regular peds two weeks ago, and they didn't hear any wheezing, but still... this cough sounds seriously scary. Scary enough that all the cousins had this blanched-looking expression on their faces when they heard it at dinner last week.
If nothing else, this will get him on Dr. W's patient roster. This way, if he does have a, um, *concerning* illness later on, I can page her directly. And if I think he has RSV, we can get him in with her right away.
And if, God forbid, there is something wrong right now, we can get the action plan started right away.
Meanwhile, I've gotta get the other two in with her next month. I'm hoping to lower #1 son to Flovent 44 (down from 220 last year!) and #2 off the stuff completely for the season.
But that's another post...!
Tuesday, April 11, 2006
Not optimistic. But why would I be?
Little B is doing better -- I didn't hear him cough once today. Hardly any snot either, thankfully. I was just about to take him to the PP for a sinus infection. So, good news there.
#2 son seems fine.
Can it be? Will we make it through the week without anymore albuterol? Might be a record!
Wednesday, April 05, 2006
Members of my family had concerns that he had an autistic spectrum disorder, but he's so smart and so demonstrative, even our doctors dismissed the concern.
But when I started to see his quirks beginning to interfere with his activities and possibly his education, I requested that he be evaluated for the special needs preschool in our town. As stated, he's enrolled, and while he's getting PT and OT through the program, it's his "autistic tendencies" that are really beginning to concern me.
My cousin, who's an Occupational Therapist, thinks he may have Dyspraxia, which I'm trying to learn more about. I'm not finding too much -- I don't even know if it's on the autistic spectrum, but it does seem to make sense, based on his behaviors. But I'd like to do a little more research before even mentioning it to our pediatrician.
I've found that other kids on the asthma-parents list have kids with ASDs or SI dysfunction, so I'm wondering....
If you have a child with and ASD or SI dysfunction, or if you can link to any Dyspraxia info, please share!!!
Here's the rant, though. I went to daycare on Monday with instructions to give him albuterol at 11:00 and 3:00 every day this week. Monday, he seemed to have gotten it. Yesterday, he told me he didn't get his medicine. My husband asked the director if she gave him the meds, and she said yes, but little B said she didn't. His teacher said she "didn't *see* him get it." (Note the politically correct wording there.)
Today, he told us he got it ONCE. Not twice.
So tomorrow, we'll have to have his teacher call us before she administers each dose.
Little B may be only 4, but the kid really doesn't lie. I take his word over the director's any day.
Tuesday, March 28, 2006
Just a quick update -- I took Oz to the doctor Saturday, and he had a pretty bad ear infection. I was concerned because he was REALLY congested and coughing a lot. Plus, paranoid as I am (hello, whole blog dedicated to my kids' asthma!) I couldn't help but remember that he did develop an ear infection when he had RSV in November.
So, PS, the weekend utterly sucked. He was so miserable Sunday, I think I would have thrown myself under a bus if I thought it would make him feel better! He was spiking fevers, his ear obviously killed, and he was just crusted with snot. (Fortunately for him, he's actually cute enough to pull off that crusty snot look. Kidding.)
But of course, by Monday, when I needed to work from home (huge amounts of work to do, too) he was just about fine, and as high-energy and cranky as any two-year-old in the world. Welcome to my world. But at least he was feeling better!
I did have him on a three-day course of Zithro, as well as DuoNeb/Albuterol. It all seemed to work. He's still a bit cranky, but hey -- isn't that what the terrible twos are all about?
Saturday, March 25, 2006
I'm not saying all kids got asthma from their drinking water. The vitamin D theory didn't work for me either.
Certainly not ALL asthma is caused by fluoridated water...asthma definitely predates treating public water! Genetics, possibly more than any other factor, will definitely predetermine which kids get it and which don't. But the number of kids with asthma has definitely skyrocketed in recent generations, and I'm always poking around to figure out why that is.
Pollution, for sure, is a factor, too, but I don't know that it's THE cause. I mean, I'm 34. I had exactly one friend with asthma in school. Now that I'm a parent in the same town, almost everyone I know has a nebulizer for their kids! Can the pollution have become that toxic in the last 30 years?? (Yes, diagnostics are different/better now, but I don't think it's the only reason!)
What changed? Was it just the environment? Or was it something we DID to the environment? Was it the vaccines we gave our kids, or something we did or didn't do (or take) while pregnant? Something they're using to treat road surfaces??
If you look at the numbers of kids with asthma, with autism, with life-threatening peanut allergies....all of these things (and other conditions) have become way too prevalent -- only very recently. And I just find it hard that this is simply evolution at work. Something, or perhaps a combination of things, has to have caused it.
I'm not a paranoid consipiracy theorist. The numbers are just too crazy to dismiss.
Forgive the rant!
Friday, March 24, 2006
SATURDAY, March 4 (HealthDay News) -- The link between maternal health and
childhood asthma is becoming clearer.
Researchers presenting new studies at
the annual meeting of the American Academy of Allergy, Asthma and Immunology in
Miami Beach have recorded associations between maternal nutrition and stress
with asthma in children.
One study found that expectant mothers who take
higher amounts of vitamin D may decrease their child's risk for asthma.
Vitamin D deficiency is common in areas where asthma is also widespread,
raising the suspicion that the two are linked, said Dr. Carlos Camargo, senior
author of the study and an associate professor of medicine and epidemiology at
Harvard Medical School in Boston.
I was just talking to a friend the other day who thought fluoridated water was the reason for the asthma epidemic. Definitely a new theory. Perhaps a kooky one, but I'll do some research!
Wednesday, March 22, 2006
#1 Son: Gooky green stuff in nose started on Sunday. Coughing started today (Wednesday). Coughing is very infrequent, but I started albuterol because our action plan says to "at first sign of a cold."
#2 Son: Gooky green stuff today, but not enough to start albuterol.
All winter long, I've felt just a little too lucky as far as their health...like I've been waiting for the other shoe to drop.
Hopefully, that's not what this is. (I know. I get so melodramatic when they start coughing!)
Saturday, March 18, 2006
"Fungal?" I said. How could he get a fungal rash on his FACE??? She said, "Well, it could be from a number of things," and rattled of a list. When she mentioned thrush, the lightbulb popped on.
"Thrush," I said. "Can't Flovent cause thrush?" "Yes," she said.
And while Bryn didn't have the white tongue usually associated with thrush, this was the only explanation that seemed to make sense.
The rash was a little resistant to Lotrimin cream, but ultimately, it did work! Mystery solved!
It's also a hint that I probably need some new spacers!
They actually sent the script back, which says to me that this is probably going on for a while.
Our pulmo warned me this could happen back in December/January. When the local pharmacist was able to fill the Rx I didn't think it would be a problem. And I certainly didn't think it would be a problem so many months later!!
Weird isn't it? Why would there be a Flovent shortage? Is it just the Flovent 440, or are the 110 and 220 in short supply as well? Can I give him one shot of 110 twice a day or a single puff of 220 daily instead?? Is there a Qvar shortage, too??
The worst part is paying the $40 co-pay for one MDI instead of paying $40 for three, which is what I'd pay if Express-Scripts was filling it....
Tuesday, February 14, 2006
So I started a blog instead of a regular journal becuase - hey - I'm a professional Web marketer, after all.
It's become sort of an all-purpose asthma bulletin board, but I really do need to remember to use it as a journal. It's pretty key in keeping up with the boys' health -- especially now that I have three of them!
So...#1 son is home sick today. That rash on his face cleared up for a day or two, then came back badly yesterday, along with a low-grade fever. He's been coughing a little here and there for weeks, but BADLY since Saturday. I've got him on nebs every three hours today.
#2 seems okay, but he was in bad shape Sunday. Seemed to be non-asthma related...whiney, cranky, bad diaper rash, yukky diapers. I suspect he's allergic to grapes, and that was the culprit. But don't know for sure...
Have a call into the PP now. We'll see if #1 son needs to be seen, or if I'll get the usual action plan:
Alternate albuterol and DuoNeb every three hours via nebulizer; Dimetapp at bedtime; keep up Flovent 110 (2 puffs, 2x daily), Singulair, and Nasonex.
$10 bucks on that, unless they want to test for flu.
Tuesday, February 07, 2006
Rather than easing constriction and swelling, researchers are working on a
treatment that would actually reduce mucus production in the lungs:
A two-drug treatment may one day help restore healthy breathing in those
with asthma and chronic bronchitis, according to a study at Washington
University in St. Louis.
Dr. Michael Holtzman and other researchers found that some cells lining
the air passages of the lungs transform into another cell type in mice and
humans with those disorders, leading to the overproduction of mucus in the
Though researchers expect it would take at least a few years for
further testing of the treatments, they think that combining two drugs
ultimately could prevent the harmful transformation of the lining cells,
allowing for healthy airway function.
Even if it is a few years off, it's still a glimmer of hope!!
To be continued....
Tuesday, January 31, 2006
It seems an upper respiratory infection has hit his lungs. Typical - we used to see this in #1 son all the time.
The PP said that "he wasn't moving air well" and his resp rate was up, although his sats were fine. And the poor baby looks and clearly feels miserably.
Bottom line: Nebs every 3 hours around the clock. Alternating DuoNeb and Albuterol (or Xopenex). Zythromax. Continued Flovent. Dimetapp if needed. Hopefully, no Predisolone necessary.
The 'round the clock' bit should be especially fun, since I'm nursing a six-week-old. I'll be in great shape tomorrow!!!
But it beats the PICU, any day.
Anyway, as luck would have it (for a change) my best friend asked to come over to use my wireless Internet. She just got a new Compaq laptop, and the wireless card wasn't working. She needed to call tech support from a location with an available wireless connection.
So - long story short - I let her use the wireless in exchange for a few hours of babysitting! #2 son got his emergency PP visit, the baby got to sleep safely through the whole thing in the comfort of his own home, and I got to do significantly less schlepping than I thought I would. And to make it a *real* win-win, Compaq tech support was able to resolve my friend's wireless issues.
Sometimes, life can be beautiful.
Thursday, January 19, 2006
On two seperate occasions, he's come home from preschool, declined dinner, sacked out on the couch, and crashed. And then he slept straight through til morning.
How weird is that?
Now, granted, we're moving next week (albeit six houses away), he's just gotten a new baby brother, and he's gearing up to start kindergarten next year. If he *was* sixteen, it'd be a sure bet that he was suffering from adolescent depression.
But at age four?
Sure, it could be depression, but I really do think he's a happy kid. He loves his little brothers, he's psyched about having a playroom in the new house, and I don't think he's quite grasping the whole moving-to-a-new-school thing for next year.
More likely, he could be having a growth spurt. He's barely fitting into a 4T at age 4.5, and after two years on corticosteroids, it's about time he shot up a few inches!
But could it be a new asthma symptom? Is that possible? I'm sure I learned at our hospital's pediatric asthma class lethargy is a classic symptom. (MENTAL NOTE: retake that class!)
Just to be safe, I'm keeping an eye on his breathing these days.
Isn't it great how we asthma-moms love to make ourselves crazy??
...I'm also a little embarrassed, as I'm a little behind on posting. Blame Baby Iggy -- it's a little tough to keep up with him, work, moving AND blogging!
Friday, January 06, 2006
I'm committed to it, as I already have two asthmatic sons, and I'm determined to give Iggy the best possible odds for beating asthma. And since I nursed my other two, I definitely owe him this.
But, God -- it just SUCKS. I'm so sore, I'm too big for any bra on this planet (seriously, Pamela Anderson would be jealous), and if I do wear one (like if I have to actually see an adult who isn't an immediate relative) I end up with a painful plugged duct.
I know this is temporary. After six weeks, it will be a piece of cake, but this is just HELL.
Ah, the things I do for my boys. (But I promise to never, EVER hold this over any of them!)
But here's what I would suggest: Get a referral to either an Asthma/Allergy specialist or a Pediatric Pulmonologist, if you're not already seeing one.
Since your daughter's asthma clearly isn't under control yet, there are a few different things your doctor might recommend. Possibly, you could increase her Flovent dosage. Or, you could add another medication -- we've got both Singulair and Nasonex in addition to Flovent on my oldest's action plan. It may be something as simple as adding an over-the-counter antihistamine to your daughter's nighttime routine. We find that helps a lot, but I don't know if it's even an option for someone as young as your little girl.
But see a specialist if you haven't yet. Hopefully, there's one near you and on your insurance plan. There's a huge difference between a pediatrician and a pediatric asthma specialist. For us, it made an enormous, life-saving difference.
Some other resources: http://aanma.org - Everything from discount nebulizers to news. But Nurse Christy, an asthma educator you can speak to for free, is by far their best offering.
I also HIGHLY recommend the joining the Asthma Parents discussion list at http://asthmatrack.org/list.html. You'll learn more than you ever thought possible from these wonderful, supportive moms!