Our Story and My Purpose for "A Place to Start"

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.

2004

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.  

2005

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.

October 2005

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!

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6 thoughts on “Our Story and My Purpose for "A Place to Start"

  1. Roanne King says:

    Andtob,

    Thank you for sharing your story! The fact that your daughter still struggled while she was breastfeeding is very important. Limited research suggests CSID symptoms do not present themselves until solid food is introduced. This is not true as both of our stories show that our babies struggled from birth! Keep me updated on how your daughter responds to the recipes and supplements I share here and in my book. 🙂

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  2. Andtob says:

    Hello Roanne,
    CSID can make you feel so alone and like a crazy mother who pounces over other children to remove the cookie/cracker from your toddler's hand! My daughter has mutation A of CSID. My story started basically at day one when the hospital gave my daughter sugar water after a shot and she was gagging and making a very strange noise…my 3rd baby…a STRANGE noise. I was told that babies make all sorts of noises. It is clear to me know we was vomiting and was aspirating. She was diagnosed with acid reflux by 2 weeks old and had trouble keeping on weight. She ran the gamet of every acid reflux med as they would typically only work for about 4-6 weeks. She was put on Reglan which stopped her from breathing. (totally different story.) She vomited constantly and we did everything to keep the food down. It was decided she had a dairy or soy allergy so I ate virtually nothing with anything in it for months and breast fed. By 6 months they decided she was not growing fast enough and said that I should have been feeding her baby food 3 times a day. That sent her weight spiraling, the screaming the vomiting etc. She lost almost 4 lbs in 4 weeks. She was diagnosed with failure to thrive, hospitalized where I'm pretty sure they were monitoring me because they thought I was starving her. But then she lost another 1 1/2 lbs. in the hospital with their feeding schedule and they released her after many tests with a diagnosis of “severe acid reflux” I was not happy. With all the diarrhea I was going through 5 to 6 diaper rash cream tubes a month. I started to monitor everything I put into her mouth and record the reaction. Throwing up within 3 minutes to 30 minutes of the first bite and diarrhea within 30 minutes of virtually everything I fed her. I had a friend with food allergies so I knew to wait a week between giving her new foods. I measured and everything to keep it all controlled. Somethings were worse than others. I avoided lots of foods for her. But then I got to peaches and nectarines and I couldn't understand why peaches threw her over the edge and nectarines were a-ok. I switched pediatricians and was immediately sent to a new gastro dr. I gave him my list of foods and reactions. He started telling me more symptoms I had missed. he was pretty sure she had some form of mal-absorpbtion and did lots of tests. So at 1 year old we received the diagnosis. She is on Sucraid, but still has to be watched for overloads. I am so excited to try some of your recipes for her. I still struggle with her, now 2 1/2, to take the Sucraid properly sometimes and it would be nice to have some back ups rather than the old standbys…protein!

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  3. Roanne King says:

    Hi there! I want to encourage you and let you know that it is possible to manage the CSID diet without Sucraid. Without Sucraid, you will need to make sure your son is getting essential carbohydrates through foods that do not contain sucrose. The other enzymes available can help with up to 25 grams of carbs per meal. I would say to use these for starch-based carbs (best sources are from sprouted grain, or use almond flour which contains less than 5 grams of starch per serving) and to still avoid sucrose unless it is from fruit such as strawberries, blueberries or raspberries (which are primarily fructose and do not require Sucraid for digestion). My CSID resource and recipe book (coming soon) includes nearly 50 recipes, over half which do not require the use of Sucraid or contain optional ingredients you can omit. There is a link to the left of this blog that brings you to the company websites that sell the enzymes for carbohydrates. They run between $25 and $50 per bottle. I hope that helps… and please join my Facebook Fan page to stay updated on my book launch and availablity! Also, feel free to email me directly with any future questions at roannnelking@gmail.com

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  4. Anonymous says:

    Hi I want to thank all of you that took the time to write this information for parents caretakers of love ones who have CSID. Reading your information give me hope. My son was given this diagnostic 6 years ago. He used Sucraid for short time and the symptoms continued. Now that I read your block about your experience with the starch and sucrose free diet I think his symptoms would it got better if I was more educate about potential diets. I came across this web site because we want to look for some other options. Sucraid drops are very expensive not an option for us right now. My son does not have health insurance. His symptoms had got worst and I am frustrated because I don’t know what to cook for him. I feel bad for him because he is always in pain and cannot enjoy his food. My son is also Lactose. We recently went to see a new doctor to seek relief from his gastrointestinal symptoms; the doctor did not know too much about this decease; he had to do some research. He told me that he could not do anything about it because we did not had any insurance. I asked him to get us set up with a dietician any way becaunse we need help to manage it. Now that is pending. In the meantime, I am doing some research on my own. Can you please give and idea how much less expensive is the other medicine you mentioned (invertase). Also I am trying to find information about Sucrose starch free diet.
    Mom from New Jersey

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  5. Roanne King says:

    Hi! The enzymes from Kirkman I use mostly for starch digestion have invertase in them. We keep foods containing sugar to a minimum, using honey and fructose as sweeteners and usually use Sucraid for packaged foods that add sugar. The best way to know if your daughter responds well to the invertase is to minimize all starches and sugars and then slowly add small servings of natural foods, such as fruits to determine how much she can handle. Generally, both Sucraid and invertase seem to process no more than 25 grams total carbohydrates per meal. I would also suggest using the Food Enzymes from Nature's Sunshine if you can get them shipped to Ireland. They assist with protein and lactose digestion, creating less work for the body. Otherwise, there are several recipes here which do not require the use of Sucraid or enzymes to work for CSID. Even the ones needing Sucraid can usually be adjusted by removing the ingredient (such as onions) which contains sucrose. I hope that helps!

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  6. blobs says:

    hi, we are a family in ireland where accessing info on csid is very .difficult. our little girl was diagnosed about 18 mths ago,and has been on sucraid for about14 months and improved dramatically. however at her last appointment with her consultant she was changed onto the enzyme invertase as it is a much much cheeper product, we got no info except that it should work in the same way as sucraid and we were told to use it in the same way, we were just wondering if you had any experience of invertase, or if u are familar with it at all, merriam

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