DAY1: Reduced Starch & Sugar, Regular Sucraid, Rash Update

Today marks the beginning of Parker’s revised (lower starch) diet plus 2ml of Sucraid with EVERY meal and snack for the next 2 months. He has an appointment with his new gastroenterologist at UCDavis on February 9th, and I want to have a consistent report of Parker’s diet, presentation of CSID symptoms(if any) and differences in his weight compared to his primary care physician appointment from November.

Aside from the rash (which is clearing up nicely after reducing starches, adding Sucraid to school meals, and adding a cup of dandelion root tea at bedtime) Parker has also had noticeable issues with BMs (traces on his underwear), and increased gas.

A brief overview to fill-in gaps in blog posts since 2009—

As previously posted, my son has experienced irritating red and scaly rashes around his mouth and on his cheeks since he was an infant. This is now recognized as one of many symptoms for CSID (see Symptoms for a complete list ). When Parker started kindergarten, he began to seem to tolerate small amounts of starch, beginning with sprouted grain bread.

IMPORTANT NOTE: At this point in Parker’s history, he had been consistently gaining 1 pound per month, and I had consulted his dietitian regarding the “risk” involved in attempting to add starches to his diet. It was extremely vital that he could “afford” to lose a few pounds if the added starches produced ill effects such as diarrhea. Please do not attempt to include foods aside from Group A with Sucraid as recommended until your child is symptom free AND gaining weight consistently, and that his or her diet is being monitored by their doctor and a dietitian. Parker was on Group A foods and Sucraid for 2 full years before I attempted to include grains or high-starch content foods.

Eventually, I added corn, potatoes, rice and an occasional flour-based food such as tortillas or hamburger buns. However, since I recognized most bread and grain products also contained added sugars, Parker began taking Sucraid (an enzyme designed specifically to assist in the digestion of sugars for those with CSID) more regularly.

I tend to avoid gluten-free foods as they are usually made with alternative flours that still contain high levels of starch. The occasional exception are single-grain cereals made with corn or rice and zero or few added sweeteners. We (myself and two children with CSID) also noticed a marked difference if we have gluten. As a result, our “grain” substitute of choice is almond flour. We also find that sprouted grain breads, even those containing wheat, do not aggravate. The theory on this is that once the grain sprouts, it realeses enzymes that in a sense “pre-digest” the starch.

Just as the baby plant finds these enzyme-activated simple molecules easier to digest, so too may some people. Proponents of sprouted grains claim that grains that have just begun sprouting – those that are straddling the line between a seed and a new plant, as shown here — offer all the goodness of whole grains, while being more readily digested…See Whole Grains Council for more on this topic.

By the time he started first grade, I was comfortable enough with his new starch-inclusive diet to allow him to eat school lunches. There were just a few “rules”– he would only choose ONE food containing starch, he was not allowed cookies or cakes (since Sucraid did not seem to be enough to prevent him having an upset stomach after eating these foods); no chocolate milk and if the menu only offered high starch content (such as a bean burrito, corn and a cinnamon roll)- he was to take a cold lunch to school. Outside of school and whenever I had access to the nutrition facts, I tried to make sure Parker’s total carbohydrate intake stayed under 25 grams per meal. This told me “in general” that he was not eating more than 25 grams of starch, though I realized carbohydrates according to the nutrition facts also included milk and fruit sugars.

In summary Parker was taking Sucraid with all processed foods and starches, most meals stayed around the 25 grams of carbs with the occasional exception of his favorite breakfast: Eggo waffles with peanut butter and syrup- which I estimated at closer to 50 grams carbs. This was his dad’s creation which in my opinion is no more nutritious than a jelly donut, but I allowed it so that Parker could eat alongside his brothers. Important to document nonetheless! Also, he wasn’t allowed additional starchy foods that day as he had “reached his limit” by my standards.

All this said, over the past two years, Parker HAS NOT had a single instance of developing a rash around his mouth until recently. The missing variable: Sucraid. For the first six weeks following our move to California, Parker ate most of the foods he had been eating without added Sucraid, including school lunches. Yes, this is my confession! Lack of resources did not  allow me to provide Parker his own food, and since he had been without major symptoms for so long, I made an exception until we could work out getting his Sucraid at school and I was stocked up on ingredients so that I could start baking foods from my CSID recipes once again.

However, when Parker started showing signs of irritation around his mouth, I realized I could not make exceptions any longer. I knew this rash was a sign his digestive system was getting pushed to its limits– and one thing I learned long ago– I needed to listen to this non-verbal indication that whatever Parker had been eating was taxing him. I also noted that he seemed less focused and tired, and had a few instances of wetting the bed. It had been so long since I felt the need to document Parker’s symptoms, I failed to recognize these earlier warning signs.

Obviously, I only have my own experience with my own children as a reference point, but this is my conclusion: Sucraid is a vital part of Parker’s diet regimen. Though it only breaks down sugars, my hunch is that it possibly alleviates digestive stress which also allows Parker to tolerate maximum starch intake for his levels of available enzymes. Or perhaps, keeping his symptoms at bay for a long enough period of time simply allows his body to process more nutrients/eliminate more toxins than it could when he was sick and everything was irritated and inflamed from undigested carbohydrates and the harmful bacteria it produced.

Stay tuned for additional “Journaling Parker’s Progress” entries as we take on the new frontier of including an adequate Sucraid dosage plus a reduction in high-starch and processed foods.

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