"just" Asthma

Asthma: A chronic disease is one that continues once you get it. It usually does not go away for a long time, if ever, and cannot be cured. Asthma is an example of a chronic disease for which there is no cure. But just because a disease is chronic, it doesn't mean that you can't have quality of life with it.

On Wednesday Alorah & I had our first meeting with Asthma Allies a group Alorah's Pediatric Pulmonologist set us up with. She was bored out of her mind (thank-you again thee inventor of DSi). It was so great to sit and talk their ear off and be heard. Alorah has a team of specialists working to find out what is going on:

Her fantastic Pediatrician.

Her amazing Allergist.

Her Pulmonologist.

Asthma Allies.

and ME. I may not be a professional but dammit I want answers!

I signed all the releases so all of the above people can talk. A great team can't be an outstanding team of they cannot communicate! Alorah has everyone above scratching their heads. She is on the following meds every day:

Prescription Zytrec (10ml at 8am)

2 puffs of Symbicort at 8am

Nasal hell rinse 8am

1 squirt of flonase each side at 8am

8:20am peak flow 3x

1 pill of Singulair at 7:30pm

2 puffs of Symbicort at 7:30pm

Nasal hellrinse at 7:30pm

1 squirt of flonase each side at 7:30pm

7:50pm peak flow 3x

When she red zones (she very rarely yellow zones) she must do three 5mg (double normal dose) nebs 20 minutes apart and take a long-acting albuterol tablet....there are a lot of red-zone details. If she stays in red zone she goes on 5 days of steroids.

She red-zones at least once/week. She has stayed in red-zone twice since Jan 19th requiring two rounds of steroids. Now, normally steroids have a "bubble" affect, they last awhile after the last dose. Alorah still red-zones within a week of her last dose. It takes, on average, 6 weeks for lungs to heal after a major (steroid involved) asthma attack. Alorah's lungs have not healed since she was admitted to the hospital in November for 4 days just before Thanksgiving. Her lungs and immune system are on over-drive. Her Asthma Allies advocate describes it perfectly "it is like a bucket sitting under a dripping faucet. Eventually that one drip causes the whole thing to overflow". The drips are triggers, the overflow an attack. Unfortunately it seems Alorah has a shot glass trying to catch all these drips. It does not take much at all for her to overflow. At the prompting of all of her professionals my dad got her an air filter for her room. Her beloved Bunny sleeps in an asthma pillow case. Her pillows have asthma cases. I don't vacuum when she is home. I don't use most cleaning products when she is at home. She cannot go outside if the wood stove is burning. She must use her inhaler 20 minutes before PE at school. She gets very, very tight and her lungs hurt every.single.day.

Most asthmatics respond to medications.

A lot of asthmatics get better with age.

Alorah is NOT responding how she should with medications.

Alorah has gotten worse every.single.year for the past 3.

I wake up at 3am every night and check on her. I just ordered a stethoscope off of amazon.com to make it easier to check her breath sounds.

We used to go to Pediatric Urgent care for her attacks. Her Asthma Allies advocate strongly advises we go to the ER from now on because several things were very troubling concerning her admission in November.

I have 4 bags packed "just in case" she is admitted again. She is so brittle....

She is SO allergic to cats that she has an asthma attack instantaneously if she is anywhere cats live. I asked her Allergist about getting her an Epi pen, she said that cat dander cannot cause anaphylaxis. I am still, incredibly, worried about her coming into cat dander even ON someone. My Mom hugged her and 20 minutes later Alorah's entire back was covered in huge hives and she red-zoned down to 120 (her peak flow personal best is 320) and required a burst of steroids and a LOT of nebs to pull her out.

Last March she was on oxygen.

Uncontrolled asthma is very dangerous. There are 3 reasons that asthma while on meds can be uncontrolled:

1. med compliance (I am MILITANT)

2. improper use of medications (again: militant)

3. it isn't asthma

Next week she will have a nitric-oxide test done. This test will help us "see" if her small airways are inflamed and give us information about how well her asthma medication is working.

Not many hospitals have this technology, it is an important tool.

Her Pulmonologist is trying to get her a home spirometer. Because her peak flow readings can be so variable a spirometer would give us more accurate information. Her peak flow can be 300 and 2 hours later be 150. It can be 300 in the evening and 250 in the morning (morning pf's are commonly lower but hers vary quite a bit and her technique is good). Her peak flows almost always go UP with nebs so I trust that she is doing them appropriately.

I asked for a pulse-oximeter, her asthma allies advocate isn't sure if we are there yet but we may be able to get insurance to cover one. Cross your toes, I have wanted one for years (they do not routinely have them for home use, you are supposed to use your instincts, your child's symptoms, etc...this can be really hard at 3am when you have been up every 90 minutes giving nebs...trust me).

My brain has been swirling since our meeting with Asthma Allies. Is it asthma? how in the hell are we going to get this runaway train to stop? Will Alorah end up back in the hospital? If she does will my professors understand? Will Alorah fall behind? What else can *I* be doing to help her? I just don't know anymore. I feel so helpless. Everyone tells me (Asthma Allies, nurses, doctors) that I am a great asthma mom, but if I was Alorah's asthma would be under control :( She wouldn't be flaring a minimum of once/week (usually more). She would have normal lungs!

Alorah never had any problems with her lungs until February of 2004. She got RSV and her lungs have never been the same since. Are her lungs forever scarred? How does the RSV play into her asthma? Why...WHY....does she get worse every year.

I know allergies play a huge part in her lung disease. She has not been able to have allergy shots lately. She cannot have them if she is flaring. She hasn't stopped flaring and I can't take the chance of her immune system being ticked off any more than it is. When she was in the hospital they did blood work that showed her IgE is very, very high. They did a CT of her sinus that showed she has thickening of her mucosa.

What does all of this mean?

That is what I pour most of my "free" time in the evening into figuring out. I don't have the degrees or the experience but I do have the will to get my child better.

I want to see her run without getting winded. I want her to be able to go to friends houses. I want her to be able to hug people without worry. She has only asked "why am I always sick" a handful of times. She knows her siblings rarely miss school. She knows her siblings don't have to stop what they are doing and be hooked up to the neb. She knows. I give her a LOT of responsibility and ownership of her asthma. As much as she can administer herself I let her (with supervision, always!!!).

If we don't figure this out she will end up back in the hospital. Uncontrolled asthma is no joke. It is serious and it is scary.

We need answers. We need to figure out what is sending her over the edge. Something...SOMETHING...is keeping her from healing.

Asthma is never "just" asthma. It is a serious disease. Even if kids are free from it for years that doesn't mean it will not come back in adulthood or pregnancy or during periods of stress. It can be intermittent but asthma is CHRONIC.