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I forget sometimes

October 10, 2009

I forget sometimes that normal life for everyone doesn’t include making sure you have 3 medicines stocked for daily consumption by one child.  That normal life doesn’t include having to know when the date of expiration on the emergency inhaler is for 2 children (and yourself).  That you have to remember what the correct dosage of the daily inhaler is when it’s needed, and how far apart the two inhalers must be.  That you have to remember where those inhalers are at all times.  That you have to remember the rules on the emergency inhaler…how many how far apart before you head to the ER.

I forget that not everyone has to evaluate a cough on whether it wheezed on the way in or on the way out (one is croup and one is asthma, and I typically have to call the nurse to remember which is which).

I forget that not everyone knows that a child, under doctor supervision, can have zyrtec maximum dosage, claritin maximum dosage, and benadryl all during the same day.  I used to know the maximum dosage amounts and the staggering times for giving the dosage.  I’m sure I’ll know them again this winter (dust mite populations are at their largest between now and sometime next spring).

I forget that not every parent has had to knowingly give their child a drug from the pharmacy that when you go to get it refilled you learn it has been pulled by the FDA, and because it was the FIRST drug to have worked on slowing down the cough spasms you think you might cry.  Then you rejoice 2 weeks later when it’s back at the pharmacy…and you wonder exactly why it was pulled and if you should be terribly concerned yet you give it to your child anyway to help them stop coughing every 10 minutes.

I forget that not all kids know how to use a nasal spray thing correctly by themselves before they enter school.

Not every family has to think about how the daily meds affect the level of thirst a child feels and the impact that might have on bed wetting.  Do you withhold water or not?

Not every parent has to start a phone conversation with an on call nurse/doctor with “My child has asthma, he’s caught a cold…what cold medicine can I give him that won’t interact with the following medications?”  Not every parent has to carry a gallon ziplock bag of medicines to a doctor’s appointment with a notecard for dosage amounts. Most of the time it’s just the box labels in the bag these days.

Not every parent has to place both the box springs and mattress, bag the pillows, make sure the comforters, blankets, and sheets are all easily washable on HOT water and dried at the HOTTEST setting weekly.  Nor do they have to refuse to allow their child to have stuffed animals, extra decorative pillows, extra decorative type blankets.  Nor do most families have to insist that their child have wood floors with no rugs.  Nor do they have to insist on no beautiful curtains, just blinds and washable valances.  Nor do most families have to monitor humidity levels in the home because dust mites can’t thrive below a specific humidity level.

Nor do most families fear a simple cold like they would influenza.  The result is the same, terrible asthma flare ups leading to asthmatic bronchitis and possibly pneumonia.  Influenza though results in it faster, like overnight.

I also forget that leaving normal families do not have to write out detailed descriptions of what meds a child should have for which symptom when leaving them overnight with someone.  We also make sure someone has all of our contact information.  If we leave the child with a family member for any length of time, our family has medical releases and health insurance cards as well as all doctor numbers, medical history information, etc.  I forget that most grandparents do not have to have these items when watching their grandchildren.

To me this is normal life.

But you know what…I did all of the above for 18 months and a child was STILL coughing daily.  I remember asking the doctor, what exactly is our goal?  To have them stop coughing?  Or is it to have them cough LESS per day?  Think about how YOU would feel if you coughed every day for 18 months.  Now put that in a small child, like preschool to early elementary age child.

Yeah.  Then to find out the medicines I put my child on to HELP them, actually cause stunted growth the first 1-2 years when they were already flirting with the “failure to thrive” diagnosis.  *sigh*

So, when the pediatrician and the allergist both suggested I do a trial of medicine for reflux, I thought, “What the heck?!”  When it’s explained that chronic cough is caused by 3 things, asthma, allergy induced reactions like post nasal drip, and reflux and that they’ve treated the child for 2 of the 3 and they are STILL coughing so let’s try that 3rd one, and I wondered if my  child is just a guinea pig.  Yeah…that’s not normal family life.  But I went ahead and did it because what IF it works?  So what that at that time my child was on 2 inhalers, 2 allergy medicines (max dosage for weight), cough med (that had been pulled by the FDA before), a nasal spray, and a pill for the lactose intolerance…so what is another medication in with that?  Especially since they had just finished a steroid for the lungs (which btw the docs will only do VERY limited times throughout the year because it can lose effectiveness and it’s our last ditch effort before hospitalization).

Do you realize what kind of RELIEF you can feel when 2 days later you realize your child did not cough at ALL that day, and you wonder, is it fluke?  5 days later I knew that reflux medication was the answer.  Then we ran out of the medication, and the cough came back.  I called the doctor and got that added to the daily med mix.  The cough stopped.  I called the allergist to see about backing off the other meds…slowly…until I took something away and the cough came back.  I ended up, through trial and error, finding out that the reflux med and normal dosage on ONE allergy med works (3rd med is the lactose intolerance therapy).

That is, it works unless a respiratory illness hits or allergens get out of hand.

We are one year POST diagnosis of reflux, with a weight gain of over 5 pounds in one year when the weight gain the previous 2 years did not even equal that combined.  Not to mention the gain in height.  I truly believe the child did not feel hungry for 2+ years.  I often wonder what 6 years of untreated reflux could do to a child’s esophogus.

BTW, when I say God has a sense of humor, think about what He gave me.  A child who would vomit multiple times a week/month/etc during a particularly bad asthma flare up when that is one thing that sets me on edge.  I still don’t like it, and while I can handle that somewhat okay…other kids doing so…not so much.

Oh, and in case you are wondering, we did test for Celiac’s.  Rapid test came back negative, but I still wonder.  I think we need to go gluten free for another child, so we might find out if it does help or not.  Gluten free just seems like such a HUGE change.

3 Comments leave one →
  1. October 11, 2009 1:09 pm

    Wow. You sure go through the trials, don’t you? It must have been hard to see your child go through that! Poor little tyke! … Glad you figured out what the cause was!

    P.S. I did a post on the meanings of the kids names. :D

  2. October 12, 2009 7:28 am

    Maybe you might want to rethink staying here! LOL It might send you know who over the edge. ;)

    Maybe I need to rethink Kera’s room a bit more.

    Oh and I remember the whole puking thing in China! LOL Between Princess and the woman who came into her room late one night and puked, it was far more than enough for you.

  3. October 12, 2009 6:44 pm

    Thanks for the RAW info! I’m really curious about the whole breathing in and out thing…which is croup and which is asthma???? Oh, I carry around meds too…but I have to carry a huge syringe filled with Valium to insert in my daughters butt if she has a seizure. Yeah…fun… Glad you are finding some answers though.

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