Sunday, July 6, 2008

The Diagnosis, Part 1: Reflux Came First

Tommy had issues from the day he was born. I had had an extremely difficult pregnancy, most of which was spent on bed rest, and he was born via emergency c-section as my kidneys and liver were starting to fail. Immediately following the surgery, my body was more exhausted than it had ever been. That night, I was thankful for my morphine drip and the nursery down the hall. I truly needed an uninterrupted, drug induced sleep. At about 3am I woke up to the sound of a screaming baby. I mumbled at my husband, "is there a baby in here?" "Well," he said, "I have been down visiting him in the nursery. Every time he eats he is so uncomfortable and fussy, and he throws up a lot. I just couldn't leave him down there."

Well, of course he couldn't, and Tommy stayed with us for the rest of our time in the hospital. And so began our life with reflux. Sam had a lot of stomach problems when he was a baby, but he never threw up. He was just uncomfortable and clearly had trouble digesting. This lasted less than a year. Tommy's reflux, on the other hand, was severe as a baby, and noticeably bothered him until he was about 4 years old. He still has episodes today. He threw up so much that when friends who wanted to hold him came over, we would cover them in a large bath towel, so that they would not leave covered in unacceptably smelling, partially digested formula. No matter what I ate, my breast milk did not agree with him, and soy formulas did not work either. He could keep down about half of what he ate with the super hypo allergenic, predigested formulas Nutramigen and Alimentum. We used to keep a separate sponge at the kitchen sink, just for cleaning up "baby spew," as we called it. I would always make sure it was blue, so if someone went to clean up the mess with the real kitchen sponge, I could yell "blue for spew." He always wore a bib, and the bib was constantly soaked. One day I called the GI specialist in tears, "I've gone through 32 bibs, and it's only 2:00 in the afternoon!"

He does not drink milk even today, and this has helped some. However, I have had him tested for many food allergies and for Celiac, and all have come back negative.

He was not what they call a "happy spitter". I was told by our Pediatrician and our Pediatric GI specialist that such spitters exist. He was extremely fussy and uncomfortable. He had an upper GI, a lower GI and a pH probe done. All indicated the same thing, severe reflux. He slept on his stomach with the top of his crib mattress propped upwards by folded towels, so he would not choke. Many times I would find him lying in a puddle of puke. I would run and fill up my basin with warm water and Johnson's Baby Wash and gently give him a sponge bath. Then I would have to change his clothes and bibs, and the waterproof pads I would lay over his sheets.

People always used to say things to me like, "Oh my baby had that; 3 months and it was gone," or "Don't worry, babies grow out of that in 9 months, maximum." None of these things held true for Tommy. I would find myself getting pissed at these people, the Dr.'s and the universe, when he was still erupting like a diet coke and Mentos experiment at 12 months. I resented the fact that I could not settle down with and cuddle my baby without being soaked in a lake of vile smelling, curdled spew. If I had known then what was in store for us, I would not have wasted the energy getting so angry over reflux.

We tried several medications: Zantac, Pepcid, Propulsid and Prilosec. His life would have been a living hell without these medications, and his risk of esophageal cancer as an adult would be much higher. He finally stopped throwing up 30-40 times a day when he was about a year old. And thank goodness, because once he started on solids, those baby spews got grosser and grosser. But he still needs Prilosec today or he has uncomfortable stomach episodes.

No therapist or doctor I have taken him to has ever been surprised that he had (still has) reflux. They all tell me that it is common in children who suffer from mental or neurological illnesses. I have read that 50-70% of autistic children suffer from reflux. The relationship between reflux and mental and neurological disorders is not something I have researched much. But, it might well be a topic worth exploring. However, in the scheme of things to come, reflux was the least of our problems.

When Will was born, unfortunately, the same thing happened all over again. At least we had the bibs on hand! Though the baby story is almost identical, Will grew out of his reflux at an earlier age and is not bothered by it today. At least I have been able to put the bibs away for good!

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