Our Story, living with GERD

As  I mentally prep myself for a visit to Ally’s gastro doctor tomorrow, I can’t help but think back to the early days. Before I had Ally, I knew nothing about GERD or gastroesophageal reflux disease. We attributed her hours of screaming to colic. Being a first time mother to a child who had medical issues was not easy. I was overwhelmed, worried and completely clueless!

I was very fortunate to have my mom help care for her during those tough early days. She was the one who carried Ally as she cried for hours and hours at night. Both Matt and I were still working but we tried to relieve her whenever we could. I knew something wasn’t right, but I didn’t know what exactly was wrong. I can’t remember how I guessed she might have reflux, think I read an article and thought ” this sounds like Ally!” We immediately made an appointment for her to see a doctor at KKH.

To determine if she really had GERD, we had to do a pH probe test. Poor Matt had to hold her down while they inserted the probe down her nostril to her opening of her stomach. I think the image of her screaming, crying and struggling on the table still haunts him to this day. The probe had to be in for 24 hours in order to get accurate readings. She had to stay overnight in the hospital, at that time, she was a mere 2 months old. I stayed with her and hardly slept through the night. At 4am that day, she managed to pull out the probe with one quick swipe. Tired and emotionally spent, I remember dialing her nurse’s mobile and bursting into tears the minute I heard her voice. She assured me that the test wouldn’t need to be repeated, she was sure that they had collected enough readings to make a diagnosis. I told her explicitly that we were not going to redo the test no matter what.

The results showed that Ally had sever GERD, her readings were 3 times higher than normal. She was put on medication straight away. I can’t say that we saw an instant relief, but over time her crying did lessen and her blue spells stopped.  She was on rather strong medication for her age, but that was the only thing that worked. As she slowly put on weight, we had to increase the dosage. It pained me to medicate her twice a day, I was worried about the effects of the medication on her tiny liver.

Some children grow out of their reflux, she didn’t. At age 1 she was still on high doses of medication. She had a hearty appetite and even though her weight gain was slow, she was growing. We didn’t restrict what she ate but was careful not to give her anything too acidic. Besides having reflux, she had terrible constipation which we once again, had to medicate her for.

Around age 2 her doctor decided that she could be weaned off her meds. We were overjoyed! i foolishly thought that GERD was behind us. Which brings us to where we are today. In the last few months, we noticed that her stomach would get very distended. There were some days that it got so hard and bloated. Being the trooper that she is, Ally hardly complained. On a few occasions she would say her stomach hurt and she’ll burst into tears. One can only imagine how much pain she was in cos she has a high threshold of pain. She was obviously showing signs of silent reflux but I was very reluctant to put her back on her medication once again. Now that I can smell the acidity on her breath, it looks like we’re left with no choice. If we leave it, the acid could erode her esophagus.

Despite Ally’s other medical issues, we’ve had the most problems with her GERD. It has caused her much pain and I really hope that we’ll be able to get it under control. Hopefully the results of her food allergy tests will give us a clearer picture as well. There is a silver lining in all of this, we have once again been blessed with fantastic doctors that have helped us along this tough journey.

This mom’s personal account of dealing with her son’s GERD really struck a chord with me. I hope and pray that other parents will find a solution to their child’s GERD problems as well.

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3 Comments

Filed under Ally

3 responses to “Our Story, living with GERD

  1. Don

    Hi, I am so sorry to hear about Ally’s problem. I really hope that she will be well.
    I can only imagine what you and your hubby had gone thru/are going thru. Already with my boy, sometimes when he gets into his whining mood for the day, I already feel stress.
    You must take care of yourself ya, and do keep us posted on Ally’s outcome.

  2. Jus

    Oh dear, first HFMD for the boy, and now this? Poor you must be so worried! I think both you and her are troopers, hang in there ok? Hope the visit goes well, and that it’ll pinpoint what you can do to make her feel better!

  3. thanks guys, we’re staying positive and hoping for the best. We have faith that her doctors will find a solution to the problem soon.

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