I now understand my toddler with severe reflux.....just sharing what's on my mind

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maryheather
New Member


Date Joined Jun 2013
Total Posts : 17
   Posted 6/23/2013 8:06 PM (GMT -6)   
My son has had horrible reflux from the day he was born. For the first few months of his life he screamed for 22 hrs of most 24 hr periods. It was awful and he was in pain. Finally his GI got him on a high enough dose of PPi to control the pain but the damage done had been severe. He also had food allergies ( milk, soy, and corn) which contributed to the reflux. Once all that was figured out and he was better ( on meds) he developed a severe oral aversion. When he first started eating baby food he would vomit uncontrollably so he stopped eating. He ate for a month or so ( 6months to 7 months old) then he stopped and wouldn't eat another bite of food until he was 16 months old. He's now 23 months and we've had to go to a feeding therapist twice a week but he now eats a few "safe" foods. Anyway, I think I can finally now understand the aversion. I've had GERD issues for a decade but never burning until recently and honestly I'm afraid of food too. I find myself just going hungry for fear of the burn. It makes me sad that he's gone through all this and has grown such a mistrust of food. Anyway, he's very well controlled now on a PPI but of course we have to start attempting a wean before too long and I fear it will be bad for him since he's been on such a high dose ( 40 mgs) for so long. I worry he'll need meds the rest of his life and that makes me sad for him.

Please no judgement for putting him on such a high dose of a PPI....he was failure to thrive and we had to do what we had to do to get him to a place where he could be nourished.

Anyone else have kids with GERD issues? My older child doesn't have any issues.

*edited because I noticed the dose I put was a typo* :-)

Post Edited (maryheather) : 6/24/2013 4:40:05 AM (GMT-6)


opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 6/23/2013 8:51 PM (GMT -6)   
maryheather

Welcome to Healing Well. sorry to hear about your son. My kids do have reflux, but it didn't start until they were teenagers.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 6/24/2013 6:38 AM (GMT -6)   
Sorry to hear about your son's struggles, as a father of four it just ripes my heart out to hear about children struggling with health isuues. I think this is the last place you would face any judgement from, the members here I very supportive and understanding. Over the last month my youngest child (7 yrs old)is starting to show signs of reflux, this has brought me to me knees. We have started to adjust her already good diet in hopes of controling the reflux before it gets worse. Best wishes!

Teeth cleaner
Regular Member


Date Joined Mar 2013
Total Posts : 88
   Posted 6/24/2013 3:52 PM (GMT -6)   
My daughter and Husband suffer with
reflux too! We all have different
symptoms with it but we are
definitely a reflux family! My
daughter has recently been diagnosed
with subglottic stenosis but we aren't
sure at this point if it is reflux related.
Her Prilosec doesn't seem to be
helping much right now and by bedtime
we have to give her Zantac too. It is
very sad and hard to know what to do!
A life of medications that can harm her
bones and cause malabsorbtion of
critical vitamins and anemia or Nissen
surgery with uncertainty of outcome and
possible re-do's for her future! There has
to be better research for safer medications
and procedures!!!!!

maryheather
New Member


Date Joined Jun 2013
Total Posts : 17
   Posted 6/24/2013 8:03 PM (GMT -6)   
Yes...it's so hard to juggle the pros and cons and know what to do. For me...I feel like I can deal with the pain because I understand where it is coming from and how to cope but my toddler can't. Every time we try to wean his dose even a tad he is in pain. I don't know if that's just rebound or if he still has a need for the meds. His Dr. is a big proponent of PPIs and thinks he still needs the drug so that's what we've done.

Teeth cleaner
Regular Member


Date Joined Mar 2013
Total Posts : 88
   Posted 6/24/2013 10:44 PM (GMT -6)   
Diet changes, PPI's/H2's, and surgery are basically
our only options. I'm really hopeful that in
our future there will be better options with
less side effects for this horrible disease!

Wendy

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 6/25/2013 7:12 AM (GMT -6)   
Hi there,

Just wondering if they also tried anti-emetic or prokinetic? Background nausea is a problem for a lot of people with reflux, so just a thought.

I would have some hope of things improving as he gets older - and moves from being horizontal (crawling and playing) to being upright most of the day. Their anatomy can improve as they grow also - loads of kids have ear problems that go as their tubes get bigger and the angle of the tube changes (for example).

MMM
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma
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