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Friday, July 30, 2010

Flash back Friday- VCD

VCD stands for Vocal Cord Dysfunction and it's one of those conditions that can be confused with asthma. Sometimes, when the severe asthma is uncontrollable on medication, they look at VCD.

#2 Son was evaluated for this, once again more fun at the hospital! He LOVED having a probe stuck up his nose as they watched his vocal chords during speech patterns. Nasal endoscopies are a great way to start the week!

His vocal folds turned out to be normal, but for many people it is an answer as to why they are displaying symptoms of asthma, yet not responding to normal asthma medications. Some people are needlessly taking asthma medication when in reality, it is a problem with their vocal folds.

Once again, diagnosis can be confusing. We are lucky to have a great asthma doctor who carefully ruled out all other possibilities before deciding on a treatment plan for #2 Son. He does have severe asthma and that is why he does Xolaire injections.

But do a little research and carefully consult with your doctor. Asthma isn't all cut and dried and can have other things that contribute. Ah, thank you genetics. Once again, we are genetically defective, I want a refund!

Wednesday, July 28, 2010

Xolair



(photo from www.xolair.com)


I'm surprised about how many people have never heard of Xolair . Of course, it's a small percentage of the people with asthma that actually need it. Since only 5-10% of people with asthma have severe asthma, many people are unaware of Xolair.




From what I have learned so far in lay-people terms, Xolair is an "IgE inhibitor". There are different immunoglobulins in the body, but "E" is associated with allergic responses. Apparently, there are little 'mast cell' (they look like little prickly balls) in the body that are filled with histamine granules. When an allergic reaction starts, those mast cells break open and the histamine is released, thus starting the allergic response. We all know what that looks like, swelling, sneezing, coughing, etc.




Rather than treating an allergic reaction (with anithistamines), Xolair is supposed to stop that allergic reaction from taking place at the cellular level.




With #2 Son's severe asthma, we were unable to keep him stable, even after Advair, Singulair, Zyrtec and 5 year's worth of allergy shots. Despite all that, he would still end up on Prednisone (oral steroids), followed by Decadron (injectible steroids), and then finally in the hospital. Then we started oxygen and IV steroids. It was getting a little old.




Our insurance company probably hates us already, and certainly doesn't want to pay $1000 a month for Xolair (our co-pay is $150). But I have this weird thing about wanting to keep my kids alive, call me crazy.



Now my heart doesn't skip as many beats when he gets sick and his peak flow drops 100 points, I know I can give him a breathing treatment and he'll respond like 'a normal kid'. Usually, he would be admitted to Pediatrics at the hospital within two days.



I hope none of you never need to use this, it's a last resort. But when all else fails, it does help keep your child alive. File it away for future reference, just in case.....

Monday, July 26, 2010

Pioneer day & triggers

It was nice to celebrate Pioneer Day with the kids this weekend. One of the cities close by hosts a pioneer celebration in the park, and it has a lot of fun activities.


#1 Son and Kitty had fun competing in a log sawing competition, followed by carving 'petroglyphs' at the Native American Village. Surrounding the park were several activities which Kitty rolled her eyes about (apparently she is getting too cool to participate in kiddie activities). We didn't hunt for the Sheriff, put her in the jail, pan for gold or participate in the watermelon eating contest.

I made sure we gave a wide berth to the station that was hosting a "needle in a haystack hunt"-just walking by all the piles of hay with kids clawing through them was enough to make us start sneezing.

Then Kitty spied the miniature ponies from across the park. She dragged us over there, but oh, what a shame, the line was too long! What a disappointment! We also told her that it looked like it was just the little kids who were riding on the miniature ponies. And lucky us, there was also a petting zoo. Great. More hay and dander. As I saw her eyeing the animals I distracted her by saying, "I know it's not pioneer food, but I think I saw a pizza stand on the other side of the park!"

Shameless, I know. But you've got to know what diversion tactics work for which kid. Of course she did bat her eyes and give me her biggest smile while sweetly asking if we could get a pony for the backyard. (Ongoing joke) Sure! Let's get two so he has a friend!

It would be nice to be able to go somewhere without always scanning the surroundings to make sure there wasn't anything that was going to set off someone's asthma. At least #2 son wasn't with us, so I didn't have to scan all the food for tree nuts!

Ah, my life as an asthma mom......

Friday, July 23, 2010

Flash-back Friday - terminology

If there's one thing I've learned over the past 10 years, it's to know asthma terminology. It helps immensely when I am at the ER to be able to say, "He's asthmatic, his peak flow is usually 350-right now it's 200." Knowing your kid's peak flow gives them a concrete reading, rather than just saying "he's having a hard time breathing".

We're also lucky enough to be able to use a friend's oxygen saturation monitor. So I can also say, "their oxygen level is reading at 89 on my sat monitor" (you should be be closer to 100). They usually admit the kids to the hospital if their oxygen level is at 89 or lower.

I tell them not to bother looking for retraction, because my son suffers from air trapping and experiences the 'barrel chest'. Retraction is when they are trying so hard to breath that they use all their accessory muscles, usually sucking in the skin surrounding the chest when they breath. You can see the skin suck in along the collar bone, and in the 'u' shaped bone at the base of the neck. You can also 'count the ribs' because the skin sucks in between the ribs.

You should of course know what maintenance medications they're on and what doses. Also, include any rescue medications, or if they are on oral steroids now or have received a steroid injection.

I also always let them know how many time the kids have been admitted to the hospital too, so they know if I'm there, it's serious!

So, use that terminology- tell them peak flow readings, sat levels, retraction, maintenance medications and rescue medications. I also usually tell them, "I know I'm in over my head, they need oxygen and solumedrol" (IV steroids). Plus round-the-clock nursing care & respiratory therapists who get paid to stay up all night and monitor them.

Hopefully none of you have kids who end up being admitted to the hospital, but if you are in the traige area, be sure to use all the terminology you know so they listen to you and get you in quickly!

Wednesday, July 21, 2010

Air quality

It's been really dry lately, I think we've had a trace of rain all month. (Of course just enough to dirty hubby's just-washed-truck)

Call me crazy, but when you can "see" the air your breathing -or cut it with a knife- that's not good. I have felt a difference in my chest, and I have a friend who's wheezing can be heard across the room! Our local news stations list red, yellow, and green air quality days. So we adjust our schedule and avoid being outside in the heat of the day.

I exercise in the morning or late evening, when the ozone levels aren't as high. We've also found LOTS of things to do indoors. In fact, we've seen a lot of movies lately.

But hey, it's summer and the kids are out of school. I need to minimize any risk I can. Since asthma triggers can accumulate, I don't need to start with a base of dirty air making my lungs inflamed, then add a few pollen irritants, and top it off with a respiratory infection. Sometimes that's the straw that 'breaks the camel's back'. So if I can cut out one thing that's going to cause problems with the asthma, I will.

So enjoy a movie! And pass the popcorn.

Monday, July 19, 2010

Prescriptions - "that's how much?!!!"






I thought this cartoon was hilarious, it's from my daily calendar. I know how this lady feels, I almost passed out when I went to get Kitty's prescription refilled last week.

I had switched to a warehouse pharmacy, hoping they would be less expensive. They weren't.

When the pharmacy tech rang up Kitty's prescription, she said "that will be $92". I said "no, no, no, that's not right. It's always $32." I was sure they had made a mistake. She helpfully asked if I had a new deductible or if the new insurance year was just starting for us. DOH! (insert Homer Simpson inflection.) Yes, it was technically a new insurance year (never mind that it's July). Like most normal people, my new year starts in January-silly me.

So, it was $96 for a one month supply. Now, all 3 of the kids take multiple medications for allergies and asthma, I haven't needed any other refills yet. I'm cringing thinking of the thought of another $96 refill.

We did discover some co-pay assistance. #2 son receives injections once a month for his severe asthma-a cool $1000 a pop. Our copay is $150 per month (cough, cough). We found a very helpful website that lists co-pay assistance called Needy Meds, luckily we were able to find a foundation that offers co-pay assistance for his particular inject-able medication. http://www.needymeds.org/ I wish we had known about this earlier, it's worth checking out especially if you have multiple people in your family taking medications for chronic diseases.

Guess I'll go through the cupboard and take stock of what prescriptions need to be refilled. * Sigh * Oh well, it keeps the kids alive, right?! That's all that matters!

Friday, July 16, 2010

Flashback 4th-cont'd

I needed to add a little to last weeks' Flash Back Friday. Writing about #2's ICU admission took awhile, but wait! there's more!

When #2 was in ICU in pediatrics, it was my hubby's turn to stay at the hospital and I was at home with #1 son and Kitty. We had a bad night when someone tried to break into the house. Kitty was crying, so I got up to check on her during the night and heard a distinctive slam of the front screen door. (Our clergy leader had warned all of the neighbors of several attempted house break-ins and to be aware) So my heart was racing as I grabbed Kitty out of her crib and ran across the house to check on #1 son-who was sound asleep. I heard some rustling in the lilac bushes by his window, so I called 911.

I was crying so hard the dispatcher could hardly understand me, but I did manage to get out that one son was at the hospital, and I was home alone with the other two kids. When the officers arrived, they couldn't find the suspect, and they asked me if there was someone who could stay the night to help me feel better. It was a great excuse for my father-in-law to ride over on his Honda Goldwing and he then spent a fitful night trying to sleep on the couch.

I called my hubby at the hospital ( note: hospital operator will not patch you through to a room after 10pm unless it's an emergency-which it was)

So for the rest of the hospitalization, I spent the nights at the hospital where I knew I was safe.

Then Kitty became sick and couldn't stop throwing up and having diarrhea. So I took her to the pediatrician in the morning (after he had done rounds at the hospital and had already seen #2 son.) She continued to have problems (now I know to ask for anti-nausea medication!)

When #2 was discharged, I took him home where Hubby watched him. I put Kitty in the car and took her back down to the pediatrician, where she was admitted to the hospital with dehydration. The nurses did a double take when they saw me and said, "WHAT are you doing here?!" I had such fond memories of Pediatrics, we couldn't bear to leave! Ya, right!

So, we spent another 4 days at the hospital with Kitty on an IV, she was so sick it took that long to re-hydrate her.

What did we learn that LONG week? That even during ICU hospitalizations, it is important to keep an eye on the other kids as well. Just because one of them is sick doesn't mean that we can only focus on that particular kid. Also important is to follow your gut instinct as a mom. Even though the pediatrican said we would just have to ride it out and to keep trying to give Kitty fluids and she would be okay, I knew something was wrong. So I kept going back until they figured out what it was and admitted her. Many times I'll say, "something's wrong, I just can't put my finger on it". And the doctor seems to take extra time and listens. Trust that gut instinct as a parent!

Wednesday, July 14, 2010

BIG tonsils and asthma

So what do BIG tonsils have to do with asthma? Well, a lot if you can't get much air past the tonsils to get to your lungs.

Kitty and #2 son both have big tonsils. In fact, the doctor said, "those things are huge! You could go bowling with them!"

#2 son had his tonsils a few years ago during Christmas break. It's really fun when you run out of liquid Lortab and have to drive around on Christmas day trying to find liquid Advil and Tylenol. We did manage to find one 24 hour drug store open on Christmas day-it was funny to watch all the customers trying to find last minute presents!

Back to Kitty-her tonsils are so big that they were almost touching. That causes her to snore quite loudly. Sometimes we have to get up during the night and roll her over so she stops snoring. She was sick again this Spring and she kept all of us up during our vacation. In fact, she snored so loudly, she woke up her half-deaf grandpa! He was quite surprised that someone snored louder than he does!

The tonsillectomy and adenoid removal was a quick operation, but a long recovery. It's been two weeks now and she said, "I'm really tired of ice cream for breakfast, can I try something else?" It seems like the ice maker on the fridge has been working over time to keep up with her ice chip consumption.

We're hoping this surgery will help her the next time she gets sick so that she can breathe a little easier. It seemed to help #2 son when he had his tonsils and adenoids out. When the hospital sends the bill, I think I'll just tell them to put it on my tab!

Monday, July 12, 2010

Scout camp and boating

Well, an early morning departure for a scout camp out for my hubby, #1 son and #2 son. I stayed up late worrying about the logistics, such as where can they use the nebulizer? If they leave the truck at the dock, does the boat have a cigarette lighter that they can use to plug in the nebulizer? I packed #2's inhaler, but his asthma is so severe, that only a nebulizer will provide relief. He simply can't breath deep enough to use the inhaler when he starts coughing.

My husband called from the dock, he knew I was worrying about if there was a medical clinic close by, luckily there is. I hope they don't need it. (Unfortunately, the worst case scenario has come true many times for us!) They have enough supplies to take care of any first aid accident, I firmly believe that if I pack it, they won't need it! It's the one time I forget to pack a medication that they suddenly need it. It's Murphy's law.

There's no telling what plants or pollen are in the area. My hubby and kids could all be fine, or they can be up all night sneezing, coughing and wheezing. And the joys of sleeping out in nature, I hear there are lots of scorpions too! I'm glad I'm not there, it's 102 degrees at the lake.

They should be back safe and sound in a few days, I told them if they drown, I'll kill them. (our family humor). It comes from years of watching M*A*S*H, we can't help it!

I'm expecting sunburned husband and kids to return, stuffed with s'mores - ah, summer!

Friday, July 9, 2010

Flash Back Friday 4th Hospitalization

Well, 4th of July always makes me a little jumpy. Is it possible to have post-traumatic stress disorder from traumatic hospitalizations?!

About 8 years ago, the fun started with #2 son when the neighborhood started to fill up with smoke from a forest fire. He had been outside playing with friends, but we brought him inside and gave him a breathing treatment. Later, he wanted to go out that night and watch fireworks so we reluctantly let him watch a few neighborhood fireworks. The coughing was persistent, so we did another breathing treatment and watched him throughout the night.

The next morning, after giving him another treatment, I went into the kitchen to wash out the nebulizer. When I walked back into the living room, I saw a side view of him laying on the couch-his stomach was sucking in dramatically and his lips were turning blue.

I called my next door neighbor and said "come quick! I need to take #2 to the ER!, watch the other kids!" I put the emergency flashers on my minivan and rushed to the ER. By the time I got there, the engine was smoking. I scooped #2 up and rushed into the ER. They motioned for me to have a seat and I yelled "he's having problems breathing, I need help!" They took one look at him and put the oxygen monitor on his finger. His level was between 79-81. (He should be close to 100) And his respiratory rate was at 77, they said it should be closer to 20. The nurse screamed for help as she wheeled him around the corner to a triage room. Not a good start. They put him on 6 liters of oxygen (adult level) and tried to stabilize him.

He continued to struggle and the doctor asked me what I thought. I said "something's wrong, he just doesn't look right", so they admitted him to the pediatrics floor. I watched as they put a heart monitor on him and thought it was strange that there were so many nurses in the room to get him set up.

Later, the head nurse confided that she took one look at him and thought "please don't crash! please don't crash!" I didn't realize he was in classified as being in ICU, but she said that he was very close to going into cardiac arrest and needing ventilation. It ended up being a very stressful 4 days, and he ended up coming home on oxygen.

The problem with #2 is that he drops hard and fast, even catching ER doctors off guard. We've learned to be more aggressive with his asthma, keeping bottles of prednisone on hand and supplementing that with Decadron injections. Sometimes it's effective at keeping him out of the hospital, other times it doesn't seem to work. It's always a learning curve!

I'm just glad we have insurance and we know enough now to prevent situations like this from happening again.

Wednesday, July 7, 2010

Allergies anyone?!

Wow! Is anyone else having a hard time with allergies?! Grass and cattail are in the "extra high" category right now - and I can tell! Anytime I go outside, my nose stuffs up, I sneeze uncontrollably, my chest tightens up and I start coughing. Now the recurrent nose bleeds are starting.

It's driving me crazy! My yard is so pretty this time of year, my stress relief is to go outside and putter around in my flower bed. Pull a few weeds, water or trim. And the backyard has strings of lights going across the yard and it's beautiful to sit back there at night. But the longer I sit outside, the worse I feel.

I finally had to take my own advice and start showering at night. Our asthma and allergy specialist has always recommended this, and the kids shower every night. Of course, their allergies are so bad that they're doing immunotherapy (allergy shots). If they don't shower at night, they roll back and forth on their pillows all night long with pollen covered hair and skin. Say hello to swollen eyes and a stuffy nose in the morning!

I also have to keep all the doors and windows closed so the pollen doesn't come in the house. At least we have air conditioning instead of a swamp cooler, but this is going to be a long summer!

Tuesday, July 6, 2010

4th of July fireworks - and smoke!

No posting on Monday, I was having fun on another 4th of July weekend! My heart still feels like it's going to burst when I watch the parade-with the American flag and all the servicemen.

There's nothing like a good BBQ, watermelon, corn on the cob and ice cream.

Of course we have to top that off with fireworks, but the smoke always makes me nervous. In fact, whenever I hear one of the kids cough, I say "Who's coughing? Who's coughing?!!" Sometimes my worry is warranted, other times one of my teenagers will say, "Mom, chill. I just swallowed wrong!"

I think the thing with asthma is that you never stop worrying. Of course many days go off without a hitch, but other days you get blind-sided by something you didn't anticipate. Like smoke from fireworks. Can't we be a normal family and just light fireworks on the 4th of July without me hovering and making sure the kids don't get too close to the smoke?!

It also makes me nervous when the kids go on campouts with my husband. I insist on packing all the asthma medication, nebulizer and the adapter for it so my husband can use it in the truck.

But, this year, no problems. #2 son did end up in the hospital one year due to smoke from a forest fire and fireworks, but I'll save that for a Flash Back Friday.

Hope everyone had a great 4th of July and enjoyed the fireworks!

Friday, July 2, 2010

Flash-back Friday

Hmm, my first flash-back Friday post. I guess I should start with the first time one of the kids was diagnosed with asthma.

#2 son was 5 years old, and was sick and coughing (as usual). I had previously taken him to the pediatrician with an article from a parenting magazine about asthma. He seemed to be sick quit often, and when he was sick, his cough was horrible and would last for weeks. The pediatrician assured me nothing was wrong with him.

This time, along with the cough, sore throat, and malaise, he was quite pale and I felt like something was wrong. When I got to the pediatrician's office , I explained that I was supposed to be on strict bed rest, (I was 8 months pregnant) and could they quickly take a look at him? I thought they would give him a prescription for an antibiotic and send us on our way. But, they took one look at him and suddenly the room was full of people working on him. They administered a breathing treatment, and I had to hold him up as he kept passing out. His oxygen level didn't increase after the treatment, so the doctor said "he needs to be admitted to the hospital so we can help him with his breathing." Apparently, his oxygen level was 82 (it should be as close to 100 as possible).

I took him out to the car, and drove around to the hospital entrance where the valet took the car. The pink ladies took one look at me and couldn't tell which one of us needed a wheel chair! I pushed him up to Pediatrics and it took the nurses 5 tries to get his IV in because his oxygen level was so low. Of course the stress sent me into preterm labor, so I had to be treated as well.

Although my husband works an hour away, he made it to the hospital in record time!

After doing a breathing treatment, the respiratory therapist said "did anyone ever tell you he has asthma?" I sputtered "I just had him at the pediatrician's office to get checked for asthma and he said no!" Well, they assured me, he does. I told him that I didn't know much about asthma, so he came back a few minutes later with 30 pages worth of printouts from the internet. I'm the type of person that read everything, highlighted, asked questions, and learned as much as I could. Talk about a crash course in asthma! That was 10 years ago, and my life has been full of asthma episodes since then.

Asthma has completely changed the direction of my life. Originally trained as an Interior Designer, I have made the decision to return to school for a secondary bachelor's degree (this time in Public Health). Even though I have spent the last 10 years helping other families understand asthma, I now have a much broader reach. I feel compelled to help others with asthma, so they don't have to learn the hard way like I did. I'll spend as much time as someone needs me to explaining the difference between maintenance medication and rescue inhalers, showing how to use a nebulizer and clean it after wards, knowing when to take their child to the doctor versus the emergency department, etc, etc.

Well, sorry for the long post. Hopefully some of my stories can help other people out there!