GERD, revisited

It’s been awhile since I last updated on our family, so I thought I’d post a little about the GERD demon that has been wrecking havoc on our household in the last year (and past years, too). GERD…gastro-esophageal Reflux Disease…is a miserable thing. Isaiah probably had it as an infant…at the time they called it ‘colic’ and left us to deal with our little baby’s constant pain and screaming with no ammunition or information to help us help him. In the years since then, they’ve gotten better at diagnosing GERD and providing medications, special formulas, etc. to make it better.

Isaiah would cry, scream, and arch his back in pain for honestly up to 20 hours a day. This went on from his second week of life until he was around four months old. He fought feeding and had a terrible time eating his first month of life, lost quite a bit of his birth weight and projectile vomited every time he was given formula (which our doctor had us do because he was jaundiced and losing weight). He vomited frequently, in fact. He was our first, and we didn’t know how much to expect a baby to ‘spit up’. He had explosive diapers that leaked all over and frequently made his little bum break out in a rash. We couldn’t leave him with anyone, we couldn’t console him, and we couldn’t sleep. It was a very hard time for all 3 of us! The picture to the left is worth a thousand words…imagine that your baby is crying like this…..*all the time*. It broke our hearts!

He outgrew the screaming at around four months, but continued to have interesting issues with his little GI tract. We had another baby (a lot of people commented that they didn’t expect us to, since Isaiah was so hard as an infant. I’d do it all over again in a heartbeat!) and Isaiah grew normally, although he had an eczema-type rash pretty much all the time and was prone to allergies. Sarah was an easy baby! But around 9 months of age, she started being very fussy and acting uncomfortable. She was a comfort eater, and had been chubby up to that point….between 9 and 12 months she pretty much didn’t gain much weight. She started projectile vomiting every now and then, not frequently enough to worry us but occasionally and for no reason. Her doctor at the time was not helpful at all, her best idea when I stressed that Sarah was just not herself and not eating as usual was to suggest that we do a spinal tap. Why? Maybe it was meningitis! For *Two Months* it was meningitis? I don’t think so. We switched doctors. Her records didn’t follow her, so her new doctor didn’t see that her weight had dropped off. By a year old, she was no longer acting like she was in pain at all and was back to the happy baby she’d been before…she just didn’t eat much and was darn tiny. She continued to throw up several times a month, with no warning or other symptoms. Her doctor said “some kids are just vomiters”. She continued to grow at a steady rate, but was so small we had to track her growth about a quarter of an inch *BELOW* the growth chart. Her doctor said, “Some kids are just small”. When she was a year old and only weighed 16 pounds, I started to worry. Everything else was right on track, she was happy and playful and meeting all her developmental goals….but she was so small and skinny and she was a *very* picky eater. The next year, I noticed that there was a pattern to the eating and vomiting. She only ate mild foods, wouldn’t drink milk, and threw up after eating chocolate and tomatoes. She threw up on car trips frequently, and threw up when she was lying down…like nap times and at night. She’d wake up, sit up, cough once and it would be all over the bed. At night, her breath smelled funny. I took her back to the doctor and told her I thought she had reflux. Yep! After 3 months on Reglan, she was back on the growth chart. After 6 months, she was in the 5th percentile instead of the -5th. A year later, she was med free and GERD free. Praise God!

Fast forward to 2007….Isaiah started getting frequent tummy aches during the summer. In October, he started throwing up occasionally when he had no other flu symptoms. He got car sick *every* time we got in the car and complained of feeling sick to his stomach frequently. By Christmas, he wasn’t eating well…two or three bites of dinner and he would be too full to eat and would feel sick. We thought at first that he was experiencing some kind of emotional stomach ache, he couldn’t really explain the pain but it was getting worse and he was feeling sick almost every night. In January, he was just miserable and not himself. Our favorite doctor had moved, so we had to find another one. She diagnosed GERD (why oh why didn’t we think of it earlier? I guess because Sarah’s symptoms had been so different and Isaiah’s came on and got worse so gradually that at the time it didn’t look as obvious…). He started taking Prevacid and the first week we noticed improvement. However, the second week he suddenly seemed even worse! We took him back in and they did bloodwork, which showed that his platelets and white cells were depressed. This was a dark and scary time…he was sick *all winter long* with one thing after another. We had to go back to re-test to make sure his blood was back to normal, but he got sick so often that we had to keep waiting. For a month, we didn’t know what was wrong and it was very scary. Finally, we were able to have him well enough to repeat the blood test and the doctor was satisfied that things were going back to normal. Huge relief. In the meantime, his GERD symptoms got better…it took a full 6 weeks of medication and some messing with the timing of the dose, but thank God we seem to be doing much better with that now. He still has allergic bags under his eyes and we started thinking maybe there’s another food allergy going on (he can’t eat gluten already…that’s a story for another post!). We tried cutting out dairy and replacing milk with soy milk…the soy milk seemed to make things even worse. We took out soy, and switched cow’s milk with goat’s milk…success! The rash he’d had since he was a toddler is gone, and he seems much better. We’ll be working with the allergy issues more in the months to come, but for right now I am hoping we get a break health-wise and can stay out of the doctor’s office for awhile. Seriously, I remember celebrating some time in early April when we had not been to the doctor, hospital or urgent care center for two whole weeks! It was probably the most stressful winter of my life.

So, that’s what’s been happening. I am praying that things will continue to get better, and stay better. I hope we never have another period like that again, and I am thankful that God saw us through that miserable time. I have a lot of respect for parents who have seriously or chronically ill children, we are blessed that this has been the worst we’ve had to deal with. And I feel lucky that Rachel so far has avoided GERD. So, that’s our GERD story! We’ll continue with the Prevacid and hope that he can be weaned off it within a year. In the meantime, I am praying for no more adventures for quite some time. I actually felt anxious even writing this down, that’s how miserable this winter was. Peace and quiet, consistency, and stability sound really wonderful right now. I’m ready to be bored! I held on to this verse all winter, and it helped…“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

2 thoughts on “GERD, revisited

  • June 4, 2008 at 7:25 pm

    Readers may like to investigate RES-Q Infant Wedge & Sling – and seek advice from the Pediatric OT Co-inventor

  • June 7, 2008 at 9:47 am

    Erica I am so amazed with how you have handled all these issues! you are such a great Mom and an inspirations! We continue to pray for good health for all in you family!


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