(she was pissed off, she could not breathe, the neb was not helping enough, and she was in NO mood for a pic)
I broke my no-net-for-spring-break rule after Alorah's Pediatric Pulmo appt. This new medication has had me pulling my hair out trying to understand it, and how it is indicated (because it is not recommended for kids under 12 anywhere that I had read on the net. There is a small (.5% vs .2%) increase in the risk of cancer, there is the risk of anaphylaxis, and some not so pleasant side effect possibilities. Trying to dissect all of the information via "Dr. Google" has been less than fun. Finally I found some good, solid break-down info especially pertaining to the under 12 crowd (which this drug is rarely indicated for-Alorah is 9). If you read THIS and follow it down it makes a little more sense. We are at step 5 with Alorah's asthma treatment. Alorah is now on:2 puffs symbicort BID (160/4.5)
1puff QVAR BID (80)
10 mg Zyrtec (am)
10 mg Singulair (bedtime, normal dose for her age is 4mg)
Flonase (pm)
liquid 500mg Vitamin D3
Nasal Rinse BID
Omega3
multivitamin
liquid lactobacillus
yellow zone we add
Vospire 4mg
albuterol 2.5 mg
red zone
Prednisone-30mg
albuterold 5mg 3x 20 min apart and then 2.5mg
Hives
2.5 tsp benedryl
hydro-cortisone cream
It's a real blast keeping up with all of that.
If you read the above link less than 6% of kids are treated with high doses of ICS (Qvar, she is on 80 the lower dose is 40) AND LABA (Symbicort) therapy. Only 2% of kids are not well controlled. Alorah's IgE in November was tested when she was in the hospital. It was around 1900. It should be less than 100.
I am NOT a fan of long-term oral steroid use. I want to exhaust every other option before we go to that. The frequency she is needing steroids is a huge issue as well. She has had 4 bursts since she was in the hospital-and she was on an insane amount in November. Keeping her at high doses of Symbicort has its own array of possible issues. In other words we cannot stay on this merry-go-round.
We are not going to go into the high morbidity rate among children w/ uncontrolled asthma even while on high doses of medications.
What we know about Alorah's asthma:
it is brittle (that was the diagnostic criteria her pulmo used)
it is HIGHLY allergic
it is not controlled despite high doses of several medications
it is causing problems in her small airway. Her spirometry reading in January was 82 (or 87, honestly I've had so many numbers thrown at me I know it was one of those) her reading on Wednesday was 52. That's not good. Asthma usually causes spasms of the large airway, hers (at least right now) is causing inflammation in her small airway (which is where your blood oxygenates carbon dioxide-and when it can't do that properly you feel like crap and you can't get your peak flow meter to even move and that is scary as hell-which is what happened last Sunday)
She has to use her neb almost every night because she gets tight
So, reading the study material in the above link gives me some hope that this may be the right road. I really, really hope so. I am not entering any of this lightly, researching this med has taken up a lot of my Spring Break but I never go into things like this blindly. I am so scared for her. She has been through so much the past few years with her Asthma and she has been so brave. She is my hero because if I had to put up with half of what she has had to deal with I'd loose it. She takes it all (mostly) in stride. The oral steroids make her incredibly emotional and cranky and loud and difficult, hungry, and demanding!!!
Tomorrow morning will be spent at the Infusion Center and we will go from there. Hopefully this is the key. It will blunt her IgE response and she can gain control over her asthma. That would be beyond amazing. Cross your toes!
3 comments:
That list of medications is, simply, frightening. I don't know how you keep it all straight.
After you're done with school would it be possible for you guys to move out of NM? I've never had seasonal allergies in my life and the past 3 days that I've been in Gallup have been pure and complete misery. I can't wait until my stint here is over and I can breathe again without sneezing.
Emily, 7 years baby---7 years. That is how long I have been navigating this world although the past 3 have been an utter nightmare as she has failed med after med after med landing us here. Keep in mind that this year has been awful for many, many people that have never suffered allergies (or have had mild allergies) because Juniper levels have been at a 10 year high so there is hope that next year will be better for you! Humidity is very hard on Alorah, even the shower can make her flare and she does not have a mold allergy (it was one of the only negatives she had when she had allergy testing). I doubt we will move, my family and support system is here and I believe firmly that kids need grandparents (and so do I!). IF the Xolair works then we will have some reprieve from the severity of her asthma and hopefully be able to reduce at least the amount of her meds. Right now every med she is on she is on very high doses so I would be thrilled if we could just reduce the amounts. Last time we tried it did not go well. At all. When I am done with school my kids will be in HS and I would never make them move during those years. Besides that in this state I am not allowed to move without written permission from their Dad and I don't see that happening...so it is pretty unlikely. This is home. When we visited family in Nebraska she had a really hard time. I don't know if there is a "safe" place for her. Most likely once I am done with school I will concentrate on making our home as asthma safe as possible (which means central a/c and no wood stove, no carpet, new windows, etc....or buying a house with those things if we lose this one). It's really complicated unfortunately. If your allergies keep up I would go see an allergist and do shots, they can work wonders for some people!
There is hope. My cousin was as bad as her making frequent trips to th ER for attacks and so many meds just like your little trooper. Through the years, he's had lots of ups and downs but survived to be a healthy adult. He is also a new mexican. There is hope. I believe that one day all of the mess and doctor trips will be a thing of the past.
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