Back in 2003, I was in the children’s hospital ward, shortly after my fourth child had kidney surgery. At the time, I was pregnant with Parker, and had no clue as to the trials and triumphs his life would bring to our family and countless strangers. As I watched my one-year-old cry out in pain from the slightest movement, unable to touch him and comfort him in his time of need, I heard God’s voice say, “I’m preparing you for something else.”
Though at the time, I didn’t understand the implication of those words, I held onto them as a promise in the months to come.
February 4–Parker James was born 6 pounds, 10 ounces and 18 ½ inches long. Though he was smaller than the average seven pounds, twenty inches of my other children, he seemed healthy over all.
However, his blood sugar levels dropped a bit before we were discharged and I was encouraged to nurse him as often as possible. He was having difficulty latching on, and kept falling asleep before my milk let down. I took him to the hospital lactation consultant, and started pumping after each feeding to ensure an adequate milk supply. Though he wasn’t growing as rapidly as my other children, he gained about ½ ounce a day for the first several months. I was in no hurry to introduce solid foods, and did what I could to eat and drink enough to keep up with his feedings.
July—Parker starts having breath-holding spells—a very scary, seizure-like episode where instead of crying, he would just turn gray, arch back and pass out. Any concerns the doctors or myself had about him not growing were put on the back burner. After an eeg, ekg and other tests over two hospital stays, he was found to have reflux and was put on the antacid Prevacid.
—Parker had also developed a mild, unexplained rash on his cheeks. When I pointed it out to the doctors, they didn’t seem too concerned. At his nine-month check-up, I asked about the rash again which had come and gone, and noted several other oddities about Parker’s physical appearance and behavior. I was hoping a discussion of the combination of his symptoms would trigger some type of diagnosis. Parker had a webbing of his second and third toes, a slight inward curve to both his small fingers, and seemed to always have a runny nose. He had also had a few unexplained episodes of vomiting; frequent, very smelly bowel movements; and seemed to sweat a lot when he slept.
However, after determining he had hardly grown in the previous 3 months, he was given a failure-to-thrive diagnosis considered unrelated to his breath-holding episodes and other symptoms. I continued to mention all of these symptoms during every doctor’s appointment and was almost always assured that all of these rarities in one child were not connected and that he would likely ‘grow out of them’ without explanation.
December 26—Parker had a severe breath-holding spell which was followed by his official first full-blown, five-minute-long seizure. After being monitored over-night at the hospital, no further seizure activity was detected, and since he had been running a small fever prior to the seizure, this event was written off as isolated and unconnected to Parker’s other issues.
Parker is tested for growth-hormone deficiency, celiac disease, other food allergies, and even stayed in the hospital over his first birthday for a 24-hour eeg-ekg monitoring test. During this five-day bout in the children’s ward, he was also given his first dose of Phenobarbital (drowning in sucrose syrup no less) and immediately threw it up. Even though he was not having regular seizure activity, it was thought maybe the Phenobarbital would calm his system enough to stop the breath-holding spells, which had been as frequent as eight in one day.
But then, he kept throwing up and began having diarrhea as well. After two more days in the hospital, a CT scan, and an evaluation of one of his dirty diapers by the lab, he was sent home on the assumption he had caught a stomach virus from being in the children’s ward for so long.
I cannot say that I was not frustrated and concerned with my son’s health. I cannot say that I never doubted I had done something to cause his discomfort. However, every once in a while, after catching up on my sleep and getting a moment of quiet in our small apartment with our five children (that I was also homeschooling!)— I would remember that night in the hospital with Jared—
I am preparing you for something else.
And I would hold on another day, or another week, or however long I needed to until I needed to face the next mountain. I learned to accept what I could not change, and did what I could to monitor everything about Parker that I could. I had started journaling all the food he ate, how often he nursed, and all his symptoms or odd behavior.
After the hospital stay on his birthday, he was nursing every 20 minutes, and I finally gave in a fed him a bottle of formula, just to give my milk supply some time to recoup. He sucked it down in no time, and though I continued to nurse him for a few more months, formula supplements soon became part of his daily routine.
The next time he saw the doctor, he had gained several ounces. Sighing with relief, we all thought this was the answer—he just wasn’t getting enough calories from my milk! And even though he continued to have rashes, six or more foul-smelling-bulky diapers per day, and several breath holding spells followed by minor seizures—I was at least in part relieved that he had started growing.
Around 16 months of age, Parker’s seizures started coming more frequently. He was napping up to four hours at one time on days following several breath-holding spells, which were also followed by small seizures. Parker had also seemed to come to a wall in his verbal and motor development. He had taken four months to walk from first-steps to fast walking across a room without falling to his knees to crawl. He didn’t seem interested at all in speaking, and of course he couldn’t even cry without going into a breath-holding spell, so we all had to learn to watch him constantly while anticipating his every need and want. I called his neurologist and as much as I hated the idea of Parker going on daily medication, I yielded to his suggestion to start Phenobarbital.
After just a few doses, the seizure activity stopped, but that was all that changed. Parker was up and about more often for the next several weeks, but he soon went quickly downhill. At the beginning of October 2005, over the course of a few days, he had become extremely lethargic. He couldn’t seem to stay awake, and would just fuss. His appetite decreased and he kept falling asleep. He had several yucky BMs, but I was so used to them by that point, I didn’t think they were an indication of what else was going on.
Having little faith that any of his doctors would have a different answer for me, I sent out an email request for prayer to everyone I knew. This time, I had to place all my faith in God, since the rest was out of my hands.
That Thursday, Parker had a follow-up appointment with his pediatric gastroenterologist. He took his normal morning nap before his appointment, but still proceeded to fall asleep on my lap while we waiting for the doctor. When she came in and began the exam, Parker remained sleeping. This was very unusual for even the most miserable 18-month old would at least protest with a small whimper in response to the stethoscope. But he kept sleeping. The doctor sat down and slowly began flipping through Parker’s chart. I could tell she was concerned, but didn’t want to alarm me.
After several minutes, she asked me if I could remember why we never did a small bowel biopsy. I shook my head in response and smiling sarcastically I said, “No. I don’t. You have done every other test.”
That seemed to clench the deal. The only reason why I think she didn’t admit Parker that minute was because of all we had already been through. If he got worse, I was to bring him to the ER. She scheduled the biopsy for the following Thursday and sent us home. He didn’t have a wet diaper all day, but finally woke up for the rest of the afternoon. He seemed like he was in a daze, sipping on goat’s milk and pear juice three or four times, but not eating any solid foods.
On Friday, his appetite decreased even more and he had seven BMs. I weighed him and realized he had lost weight. His belly was swollen and had a grayish tint to it. He couldn’t move himself around the house, and would start fussing weakly when he wasn’t near me. He managed to drink around 10 ounces of goat’s milk and some pear juice before falling asleep for the night.
On Saturday, he had a wet diaper upon waking up. This was a good sign and probably the only thing that kept me from rushing him to the ER. Then he didn’t have a BM until around 12noon, so any thought that he was dehydrated quickly diminished. Though he was still very weak and falling in and out of sleep, I decided not to give him any goat milk or pear juice that day just to be safe.
Somehow, he managed to recover enough over the next few days to be well for his biopsy procedure. Though I had a thousand questions, I knew this was the last straw. If I didn’t get answers this time, I would have to take things one day at a time the best way I knew how. When the doctor came to tell us she was done with the procedure, she sat down near my husband before beginning.
Again, a look of concern crossed her face as she tried to explain what she had seen during the biopsy. If we agreed, she wanted to have a CT scan done of Parker’s chest. His esophagus tube was extremely narrow right about the point where his aorta valve would be attached. If his aorta was wrapped around his esophagus, he would need heart surgery. This could explain his breath holding spells, and if his heart was working overtime due to the defect, his slow growth could also be explained. We would still not understand his other ailments, but it would be a start. However, we would not get the results of the CT until Monday.
I think that weekend tested my faith more than ever. If Parker needed heart surgery, there would be a huge risk factor involved.
He could even die. Was this what God was preparing me for?
I didn’t know what choice I had, and I just let it all go; all the control I thought I had over Parker’s well being. I gave it all to God and told Him I would accept the diagnosis, no matter what it entailed.
Eight am Monday morning, the phone rang. My heart fluttered and raced as I answered the phone. It was the GI pediatrician. I let out a huge sigh, as if I had been holding my breath for three days, and tears stung my eyes as she told me Parker’s heart looked fine. She could not explain what was causing the narrow opening, but nonetheless it was likely being constrained when Parker became upset. At least now we had an explanation for why he could not catch his breath on his own. The rest of the test results would take a couple of weeks.
The week before Halloween, the final results came through. “Parker has Congenital Sucrose-Isomaltase Deficiency,” his doctor said slowly over the phone.
I grabbed a pencil and a notepad. “Spell that for me and then tell me what it means.” I could hear the relief in my voice and I think I may of even have been smiling. I had no idea what Parker had, but I was too relieved to care. We finally had an answer—a diagnosis!
Oh, if I only knew! The only thing his doctor knew about CSID was that Parker couldn’t eat table sugar or starch. I would have to look up more information online and seek the guidance of a dietician to help curb his diet. After a huge sigh of relief, I prepared myself for the work it would entail to finally know how to care for my son.
I felt very equipped and capable, even with all the other commitments in my life. I was finishing my degree online and had learned how to effectively research on the web. I immediately searched for the CSID site the doctor gave me, and registered at NORD (national organization for rare diseases), and began calling to make an appointment with a dietician.
It didn’t take long for me to realize why Parker’s doctor couldn’t tell me more. There are only a handful of references to CSID, and they all pretty much sum up the cause and vaguely discuss the elimination of starches and the need for Sucraid to digest sugar.
Rather than frustrate more mothers like myself, I want to give hope. I want to encourage each parent, doctor or dietician to use what I post here as a starting point: A Place to Start (my current book project based on this blog). For me, having some sense of the possibilities, and understanding what was happening inside my little boy’s body as a result of undigested food, made it far easier to persevere into the unknown.
Today, Parker is a pure blessing to everyone he encounters! He is loving, kind and smarter than a whip! I have no doubt his suffering early in life was always meant to help others. I encounter people on a daily basis who want to know more about Parker’s diet (now my daughter’s and mine as well), and how what I have learned can help others facing digestive problems.
I pray that between all the science, recipes, and stories that those who read this will also read between the lines and be inspired by the power my faith has played in the compilation of my on going CSID project.
May God bless every mother with a peace beyond understanding as she attempts to do all she can to bring her child to a state of complete health and wellness!