My last post seems like ages ago. I can barely remember the last time I was able to lay Janna down flat for tummy time without her suffering from reflux and an aspiration attack. I’ve got a full out GERDling (gastroesophageal reflux disease).
The last month has seen many sleepless nights and many restless days with me trying to manage Jannas symptoms and researching strategies for managing GERD effectively.
I keep joking that Janna is the most expensive baby on our block. Here’s why:
Essential GERDling Gear:
- Dr. Browns Bottles
- Hypoallergenic formula (if not Breastfeeding)
- Breastpump with storage bottles (still attemping to feed some breastmilk even if she can’t take it directly from the source.
- Simply Thick™ to thicken feeds to help avoid asperation of vomit or excessive “spit-up” (commercial thickener for formula as intollerance of rice thickening only worsens symptoms for Janna)
- 30 deg angle for sleeping (RESQ wedge) *very good investment!
- 30 deg angle foam for chaning table *can get this cut at a foam shop
- 30 deg pillow for feeding (pollywog brastfeeding pillow works when Janna’s symptoms aren’t too horrible)
- babycarrier – one that doesn’t make me carry weight on my back for long (I own 4 different carriers now)
- Hug me Joey – Infant car seat adapter (most infant car seats are seated too deep to be tolerated by GERDlings.)
- Infacol (Simethicone to help with gas)
- A multitude of burp cloths/ receiving blankets
- 4 strain Probiotic (they need rebalance as the meds will put them off) we picked up a hypoallergenic formulation from Kirkland Labs in Oregon.
Meds
- Novo-Ranitidine (Zantac) an H2 blocker that works intially for immediate relief but often will eventually stop working because the stomach develops more receptors to compensate for the blocked receptors that signal when to produce acid. (Tachyphilaxis) *www.reflux.org/reflux/webdoc01.nsf
- Omeprazole/Lansoprazole. PPI or Proton Pump Inhibitors are the best for relief and chronically perscribed last because they are “off label” in Canada or not necessarily approved for use in infants. Studies at the university of Missouri have demonstrated the effectiveness and safety of PPIs for longer term therapy.
http://www.marci-kids.com/summaries.html As a result of what I assume is it’s off label status, dosing of these PPIs often appears too conservative to be effective. Take note that Prilosec suspensions are very unstable and will often begin to degrade after 5-7 days rendering the active ingredient Omeprazole useless. (Dr Jeffery Phillips) We tried Omeprazole and it had almost no effect for Janna after one week. I didn’t want to wait another to see if it would “kick in” as advised by our pediatrician. I switched her to Prevacid Capsules with “Bufferbabies” used as a suspension as per Jeffery Phillips recommendations. (Yes they do respond to email and take international “patients”. 
- Motility Drugs: Domperidone (Canada) designed to increase motility of the bowels through working on the nerves that control peristalsis, the wavelike contractions that push food and fluids through the gastrointestinal tract, much like squeezing a tube of toothpaste from the bottom up. *http://www.marci-kids.com/medications.html we were perscribed Domperidone but I took her off of it because I found it really wasn’t doing anything to help and I don’t like the possible side effects: as per http://www.reflux.org/reflux/webdoc01.nsf/(vwWebPage)/EPS-TD.htm?OpenDocument
It’s been a tough haul but we are getting there. With thickened feeds she no longer spits-up/vomits 30mls of her feeding. With the proper meds I hope to stave off feeding aversion (which we were beginning to see signs of before we started the Ranitidine and it actually worked well for a few days!) We start Janna on the Prevacid w/Bufferbabies as soon as the Bufferbabies carrier for the Prevacid arrives from MARCI.
Even with her change table at 30deg I still have to perform the “quick change” to avoid reflux episodes and we can only lay her down on a 30deg sleeping surface 1hr after a bottle. She arches almost constantly now unless she’s drinking from her bottle. We did see a cessation of this while the Ranitidine was working. We’re now back to the arching and her dose of Omeprazole (which we’ll keep her on until we have the Prevacid ready to go) still does not seem to help even after a week of being on it.
Again she was sleeping better in the first few days of Ranitidine dosing but she’s gone back to sleeping maybe 4-5 hours at night and usually being up most of the day with the exception of a 1 hour nap and a small handful of cat naps during and right after feeding for the past few days. Today has seen her have more sleep during the day than usual but it’s hard to tell if it’s due to omeprazole finally beginning to take effect or plain exhaustion. She fell asleep this afternoon twice during her bottle, once after the first 20mls and dozed for 15 minutes and then again after the next 20mls and stayed asleep for an hour and 20min. Falling asleep during her bottle is something we see quite often, and often after only the 20mls. I think this is because the liquid goes down her throat and gives her temporary relief and then the exhaustion kicks in and she falls asleep.
We’re still working on solutions, every week sees us trying something different or new.
These sites were very helpful:
www.pollywogbaby.com (for essential gear)
www.marci-kids.com the online home of the Midwest Acid Reflux Children’s Institute
www.reflux.org the PAGER site a non profit group dedicated to the provision of information and support to parents, patients and doctors about Gastroesophageal Reflux (GER).
www.infantreflux.org a forum for parents managing GERD symptoms in their children.
So to close, we’re not out of the woods yet. Not even close but at least I feel like we’ve found a marked trail.
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