Thursday, February 15, 2007

All Reglan is not created equal

Since Ellie left the hospital she has been on a whole string of medications to help her gut do more of what it is supposed to do.

These are not your average drugs and can’t come from the CVS or Walgreens down the street. Instead, the have to be ‘compounded’ by a special kind of compounding pharmacy. This is usually the older independent pharmacies that you may not even notice in your town.

A couple around here still call themselves apothecaries, a term that I thought went away with Romeo and Juliet, phrenology, and leeches.

Apparently I was wrong.

When we left Children’s in December we got Ellie prescriptions filled at the apothecary that the hospital knew that is close by the hospital. It is a tiny place in the basement of a building with beakers and vats of stuff cooking. It is a bit of a pain to get to, but it had the drugs that Ellie needed and made them quickly for us so we got her meds there to start. It also has all sorts of people getting their custom meds which is a good sign.

With two return visits to Children’s, that original 30 day supply managed to last us almost 2 months.

This past weekend the Reglan ran low and to save a trip to Brookline for a refill we called the small independent pharmacy here in Wellesley to ask about getting it refilled.

Sure , they had it and could fill it for us. Great. We don’t have to go to Brookline to get her meds, just to the pharmacy next to the grocery store.

Some meds, some dinner and I’ll be home.

A great plan which worked just fine until Abby tried to give Ellie her evening Reglan-Ellie wanted no parts of it and spit half of it out before barfing the rest onto her bib.

Something wasn’t right with the smell of the liquid and the taste was off as well. It tasted like Chocolate/Vanilla instead of baby fruit. We stopped right there and waited for morning.

Reglan is a nice drug but we stop and start it when things seem odd.

We called the pharmacist at Children’s the next morning and found out that all Reglan isn’t the same. Most likely what she got was the adult version that had the same dosage but also had a lot of alcohol and sugar in it- two things that are no-nos for short gut kids and can cause all sorts of other issues.

Strike One.

On to pharmacy number two, in Needham which mixed up a batch of ‘alcohol free’ Reglan with ‘just a tiny bit of sugar in it for the watermelon flavor’.

Ellie took it.

But then the fireworks started.

Instead of pooping 2-3 times a day, Ellie has pooped six times for the past two days and was just grumpy in the night.

Strike Two. Pooping six times in a day brings a certain Johnny Cash song to mind…..

Poor little girl.

We’re not sure if the new version of Reglan is the culprit but we stopped it yesterday and her poops are back in order.

Her poor sore bum seems to better, too. We have really good hospital diaper rash cream, powder and ointment which takes care of the rash very quickly. How we will ever go back to plain ol' desitin is a mystery.

Abby is off to Boston today to get the good stuff directly from the pharmacist Children’s to tide us over until the next prescription is due.

We’ll be driving to Brookline for meds from now on.

Love is a burning thing
and it makes a fiery ring….

3 comments:

beth brogan said...

I work with a guy whose cell phone ringer is set to "Burning Ring of Fire." Every time it rings I think of you and John. I'm going to continue to think of you and John when I hear it, because Ellie is simply too perfect to be associated with such indignity.

k8land said...

I will add this to the growing list of things the Brogans know in detail that I never thought would enter my brain. All 3 of you (okay, Gus too) continue to amaze me.

We clearly need an Ellie mix.

Martha Brogan said...

Another feather in Children's cap!