Fighting Eczema with Paleo and Aggressive Detox

I feel an obligation to keep everyone informed on Parker’s progress regarding his recent battle with eczema and newly diagnosed food allergies. I want to make it clear that my own error in judgement and allowing compromises to his diet are likely contributing factors. Although there is no way to know for certain, he displays many of the signs of leaky gut–a condition the mainstream medical community doesn’t necessarily recognize but is widely accepted by non-traditional medicine.

In my paleo search, I discovered the book Practical Paleo, by Diane Sanfilippo. The author is a Certified Nutrition Consultant and fully embraces paleo but also understands the many health conditions associated with poor dietary choices. Her book contains a 30-day meal plan for Autoimmune Conditions, including eczema. This is the plan I started feeding Parker this week.
I was surprised to learn about many gut-irritants that are considered “CSID-safe.” Not to say these foods are not okay when leaky gut is not present, but beyond the obvious grains, the lists includes large quantities of leafy greens, raspberries and strawberries—plus eggs, nuts, all dairy and seeds. Parker’s normal diet consisted of most of these foods at home, while away from home this past year he has consumed large quantities of processes, packaged foods (without Food Enzymes and Sucraid.)
This may clear up the mystery as to why some CSID children seem to be irritated by raspberries, strawberries, or dairy (regardless of lactase enzymes) when first transitioning to CSID foods using the Induction Diet I outlined in my own book.
All this said, I want to make it abundantly clear that the foods and recipes I list on this blog–with the exception of those that include dairy products–are not likely the cause of Parker’s present health issues. Although now many of these foods (as listed in bold above) are adding to the problem because he consumed large quantities of grains and GMOs this past year.
In that time, what started as a few eczema patches inside his elbow and behind his knees last December has now progressed into large patches spread across his arms, around his neck and face. The allergy test done in June revealed new food allergies (he had an allergy panel done around age 6 which came back negative for these foods/environmental factors.)
Since he is now allergic to wheat, egg whites, milk (Dr. didn’t clarify lactose or whey), shrimp, cockroaches, Timothy grass, penicillin, cedar, dog and cat dander and hair, not to mention heat and chlorine irritate as well— the summer has been quite a challenge but at least I have been able to control most of his diet.
Sad to say, just removing these foods has not been enough to clear up the rash. The gluten-free baking flour attempt in July didn’t change the situation either. All Parker wanted to eat was the bread, pancakes, etc., and I suspected the high-starch flour was hurting more than helping.
So two weeks ago, I removed all grains (again) and gluten-free baking items. Then Parker started mega doses of probiotics, omega 3s, Vitamin D with magnesium, chlorophyll and having Sucraid and Food Enzymes with every meal. I hoped things would clear up by the time school started this past week, but I think his body needs more time.
The 30-day menu for Autoimmune Conditions in Practical Paleo calls for very little sweet foods. In fact, left-over dinner foods are listed as breakfast for many days. The starchy-root vegetables I have tended to avoid feeding Parker over the years (sweet potato, beet, parsnip), cannot possibly be as harmful to him as the corn, potatoes and wheat flour I have allowed more recently. According to Diane, these root vegetables actually promote the growth of healthy gut bacteria, something I did not realize. Parker will still be taking Sucraid and Food Enzymes with every meal, regardless.
The plan is that after 30 days, if there still isn’t marked improvement, he will begin the 30-day plan again, but I will remove Sucraid as the only variable. My hunch (and this is only my opinion until science proves otherwise) considering Sucraid is yeast-based, is that this may be feeding the bacteria-growth contributing to his rash.
For now, this weekend (next 72 hours) I finally have time (work, writing, and back-to-school commitments have been brutal in the past few weeks) to aggressively attack this eczema from inside and out. Parker is stuck on the couch alternating 24-ounce cups of Chlorophyll Cocktail and organic Dandelion Root tea. With every meal, or 3-times per day (as I am not making him eat unless he is hungry), he will be taking the following supplements:
I will try to post again on Sunday evening to report on how Parker is doing. For now, I have lots of food prep and baking to do to make sure he has ample school lunch options for next week.
Oh, and here is a glimpse at one of his lunches from last week…
olives, dried organic apples, left-over mustard-glazed chicken from Practical Paleo book, raw almonds, and raw organic carrots. Lunch box from yumboxlunch.com.
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Managing CSID after Antiobiotics

How to Bring a Healthy Balance Back to Your Gut

This past week, my daughter without CSID got strep throat. For most families, this would not be a concern. Simply go to the doctor, get antibiotics and within a few days all should be back to normal. However, in our home, using antibiotics can result in weeks or months of digestive problems. My biggest concern was that Parker would catch strep from his sister and require antibiotics. This would put him in a highly sensitive state, and reverse much of the progress he has made in recent months. Worse, his diet would become highly limited on the cusp of school starting again, and he could potentially lose weight.

So far, he is not showing any signs of illness. Upon his sister’s diagnosis, I had him on a preventative dose of 1000mg Vitamin C (Emergen-C packs sweetened with fructose), plus gargling with Echinacea and salt water three times per day. Salt water may wash away bacteria, while vitamin C and Echinacea build immune-system strength.

However, with this current threat to Parker’s digestive health, I thought I would also list the additional steps to take if antibiotics are needed in the future.

For a normal, healthy person without digestive issues, it can take up to 5 years for good bacteria to rebuild in the digestive tract! You can imagine how difficult it is for someone with digestive problems to recover.

However, I have good news. If you are prepared and take precautions, a course of antibiotics does not have to take months or years to get over.

First, it is important to have plenty of digestive-friendly foods on hand. These include eggs, green vegetables, homemade chicken broth, plain yogurt, liquid chlorophyll, lemons and berries. Fruit and yogurt smoothies and scrambled eggs with mixed and softened non-starchy vegetables are among the easiest, nutritional options while recovering from an illness.

Removing dairy products except for plain yogurt may also be needed. Avoid the normal “B.R.A.T.” diet if antibiotic use results in diarrhea. For those of us with carbohydrate intolerance, Bananas, Rice, Applesauce, and Toast can exacerbate symptoms. Ideally, implement the  Induction Diet I describe for the first phase of controlling CSID symptoms. It may take three weeks or longer to recover from a course of antibiotics, but it is important to avoid sugars and starches until normal bowel movements occur. In addition, probiotic supplements and digestive support supplements are crucial.

Finally, if starches are normally tolerated, reducing or eliminating starchy foods for ten days or longer may be needed. Antibiotics kill all the good and bad bacteria in your gut. Unfortunately, harmful bacteria grow quickly and thrive on sugars and starches. Your goal is to increase good bacteria first, which will result in a healthier balance and few digestive problems.

Although I am an advocate for natural remedies, our family has had too many serious strains of strep to consider avoiding antibiotics. However, I believe we have avoided spreading strep throat by taking precautions once we are exposed and before symptoms occur. In addition, being aware of the steps to take to bring our bellies back into balance after illness helps us to recover quickly with little long-term consequences.

Breastfeeding and CSID Research and Surveys

I am collecting information regarding breastfeeding, digestive health in general and the CSID connection. To date, there is no documented research indicating that children with CSID present any symptoms prior to beginning solid foods. However, my son Parker DID show signs of failure to thrive, suffered from seizures and presented other symptoms related to CSID long before he had anything but breast milk.

Breastfeeding to strengthen digestive health

According to some studies on breast milk in general, the oligosaccharides found in human breast milk can reduce or prevent diarrhea. This information got me to thinking how my son, Parker, never had full-blown diarrhea, though his BMs were always oily, very smelly, and bulky compared to my other breastfed children. As many of you mothers out there know, breastfed infants rarely produce smelly BMs. Usually the “stink starts” when other food is introduced!

As a result, I would like to gather some more information in order to write a detailed article which touches on CSID, but reaches a broader audience of mothers who may not recognize this additional benefit to breastfeeding their child. Though CSID cannot be prevented by breastfeeding, my hunch is that it can definitely protect your child from developing other digestive diseases or infections due to an imbalanced gut. There is already proof that breastfeeding can have a “protective affect”on children susceptible to Celiac Disease.

Breastfeeding may have prevented my son from becoming severely dehydrated

When I think back to just before Parker was diagnosed with CSID, I recall the week before seeing his GI, he was very sick and lethargic. He was having several BMs, several in an hour at times, but nothing that appeared to be diarrhea. After receiving his diagnosis, I discovered that many children with CSID are hospitalized due to dehydration. Though Parker was hospitalized several times, the reason was always due to his seizures, not his digestive woes. Since I breastfed Parker until he was about 14 months old, adding only some solid food at nine months (most of which I removed from his diet since nearly everything seemed to exacerbate or increase his symptoms), I fully credit the benefits of breast milk as the sole reason he was never hospitalized for dehydration. However, breastfeeding may also have been the reason for his delayed diagnosis given it may have prevented the severe diarrhea that would have demanded the doctors attention!

Share your CSID and breastfeeding story connections

Of course, this theory cannot be proven for our particular circumstance. However, if we can band together and share our stories related to breastfeeding (or not) and try to find a connection, we may be able to help that child and mother facing undiagnosed digestive issues.

You will see two surveys posted on the left side of this blog. If you have a child with CSID or you suspect CSID or another digestive issue is the cause of your child’s health problems, please select the survey answers that best represent your situation. If you are interested in sharing your story in more detail, please respond by commenting on this post or by sending me an email.

Thank you so much for your support on this important topic!

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.

January 2010 GI Appointment Update

January 22, 2010

PJ had a check up with his GI yesterday. He has gained 1 1/2 pounds and grown 1/2 inch since his last visit. This is great news since he has been eating starchy foods for the past few months! Apparently some Group B kids are able to take in more starchy foods and transition into Group C later in life. There is still a lot of research going on to fully understand this, but it may explain why there are so few kids who fall into Group B. I am thinking it may have something to do with the sensitivity in the digestive system, and perhaps after eating the correct foods, those enzymes are able to work more effectively. I also think that using Sucraid regularly may play a part.
Beyond provable theories, I must also share that in August, our church prayed for Parker’s healing and for a breakthrough for me as I was getting to a point of frustration and exhaustion when it came to the time and money spent on feeding our whole family. It was only after that prayer session that Parker was able to eat starchy foods without breaking out in a rash. So in part, I must credit his progess with Divine healing or at minimum, giving me the faith to feed Parker foods I would never, ever try to feed him! However, just as my son is a unique creation, and so many parts of his life involve miracles, each of your children are unique. There is no telling why some of them fare better than others, why there are so many different mutations and why all this makes it nearly impossible to set a standard for all those with CSID.

Rash May be A Good Sign of Detoxitfication!

Wow! After getting frustrated about Parker’s reoccurring rash– I just came across a snippet from a book about detoxification that might explain what is going on. (The Detox Book, by Bruce Fife) Since Parker has always been one to develop rashes as an indication of something going wrong, this book says that this rash may be a sign his body is detoxing– which makes perfect sense considering the fact I have eliminating all that excess protein! This book also says not to increase medications or vitamins, but to let the body to its job and let the rash run its course.

I was going to cut out the Sucraid for a week anyhow, to see if that was causing the problem. But now I am going to cut it out to help his body continue to heal without having to process the Sucraid. I have actually increased his Sucraid during the past month, so this may be hindering him more than helping him.

Other “symptoms” of the body detoxing include cold symptoms, constipation, discharge from eyes, nose, or ears, moodiness, tiredness and more.

I know personally I panic whenever Parker shows signs of stress. But I need to remember if I am doing everything right, or mostly right and feeding him the best I can, nothing in excess and making sure he gets plenty of fluids and rest, that I can trust his body is doing what it needs to do to make him healthy.

After going all day yesterday without Sucraid, a lot of water, almond cookies and fruits and veggies, the hive-looking rash on his legs and arm have faded considerably and are now light pink and dry looking.

I plan to make sure he has plenty of vegetables today, his chlorophyll and distilled water. He will still take his Papaya Mint with his eggs, and his Magnesium Aspartate as recommended by his naturopath.

One thing we all need to remember as well is that when we use natural methods to help our children, it often takes more time to see improvement that it would with strong medications. But we need to trust that God designed our bodies to heal themselves if given proper time and not hindered by toxins. We need not rush the process to make ourselves feel better.

Mystery Solved About High Proteins!

I have been trying to figure out what was causing Parker such high protein levels and through doing some research for another mom– I discovered that Parker was getting about 3TIMES TOO MUCH PROTEIN!!! Instead of getting 30 grams per day, he was getting closer to 100 grams with the chicken and hamburger patties.

Wow! This explains so much. His poor little body just couldn’t keep up with processing all of it.
He is now going on Magnesium Aspartate until his Urea levels drop. In the meantime, his protein will be coming from eggs and almond flour– in much smaller amounts. The magnesium will help his body eliminate the excess protein much faster. Once his level return to normal, I plan to add small portions of chicken, fish, and cottage cheese into his diet once or twice per week. But he will still need lemon on his meat to assist in the digestive process.

This is one of those Mommy Moments– where we think we are doing good or making up for the areas that are lacking and instead end up doing what is worst for our child! But I don’t feel bad– I am grateful that I was able to discover what I did wrong, learn from it and move on. I trust God is leading me and only allowing Parker’s body to suffer enough to speak to me until I change what needs changing for his good and the good of every child I am suppose to be helping through this experience.

AND I am very grateful that I found this out BEFORE publishing my book! I will take more caution in the recipes containing meat and other protein portions and label recipes so that you will know how much protein your child needs and won’t over do it like I did.

Tests Results– Good News and Bad News

The first photo shows his rash a couple of weeks ago, representative of what it was this morning, though he had more irritation on his upper lip and less on his cheeks. The second photo reflects his rash after two doses of Magnesium Phosphorus salts this afternoon.
I am a bit overwhelmed at all of the information I just received regarding my son’s digestive system and other vital organ function. It has been over a year since Parker had a Thermography* and Chemistry* test at his naturopath and I was finally able to set aside the time and money to have him tested.
I was really hoping for a wonderful report, as his growth has been so great this past year. Though he has made many strides in his overall health, his doctor found a few concerns and has revised his diet and supplement regimen in effort to bring better balance and health to his body.
I plan to do more research on all the information she gave me, but the following is a summary of what we discovered.

1) Right off, Parker is suffering from an itchy and irritated rash around his mouth. This happens on occasion, and I usually treat it with Aquaphor. Most of the time I trace back this skin irritation to a few dietary compromises the previous day. Though I am aware that skin conditions are a sign the internal organs of the body are stressed—I admit I made light of his face rashes as a temporary set back and a quick fix.

However, this morning, the rash in combination with his testing revealed some startling and serious results. Please bare with me as I try to put into Lehman’s terms what his doctor explained to me.
Between his Thermography and Chemistry, results indicated his Ureas are off-the-charts high and that his colon and appendix were also highly stressed. From what I gathered from the doctor and a quick Internet search, ‘urea’ are chemical bi-products of our bodies breaking down protein.
In my research I have discovered that most people eat way too much protein. So it makes sense that Parker—his main diet being of meat, chicken, eggs, and fish—would be a bit stressed out. We had gone over this possibility before, and made some alterations to his diet, including the addition of lemon to all his meals containing protein. It just so happens that we ran out of lemons a few days ago and I had not had a chance to buy more. This could possibly explain a small elevation in ureas, but I am thinking I have just been letting him eat way too much meat.
In addition, the rash around his mouth specifically indicates stress to his stomach (above lip); his large intestine (below lip) and his small intestine (sides of mouth).

2) The plan for now—NO MEATS, POULTRY, FISH or CHEESE until is urea levels decrease significantly. This is going to present a challenge, but thankfully he can eat all the eggs he wants. In addition to eliminating these proteins, we are also adding the following supplements to help him recover as quickly as possible. The stress of his appendix are a concern for problems later in life and since he is just shy of 5 years old, we need to determine safe levels of protein so he doesn’t keep getting to these high levels of toxicity.


Addition of Slippery Elm Bark Powder.
I have purchased a large bag of powder and will be making capsules for him to swallow with his other supplements. I will start with 2 capsules per meal.
According to the Prescription for Nutritional Healing by Phyllis a. Balch, CNC , slippery elm “soothes inflamed mucous membranes of the bowel, stomach and urinary tract…Beneficial for Crohn’s disease, ulcerative colitis, diverticulosis, diverticulitis, and gastritis.”

Addition of Magnesium Phosphorics 6X (Hylands)
He has already taken 2 doses of 6 tablets each. His doctor ensures me he can have as many of these as he wants to. I plan at the least giving him 6 per meal for the next several weeks.

Increase in his amounts of Leafy Greens in soups and eggs.
His doctor reminded me that because he lacks enzymes and has a higher risk for stress in his digestive tract, that most if not all of his vegetables should be steamed. This keeps his body from working so hard to break down the food and retrieve vital nutrients such as calcium and magnesium.

Activation of Both Chlorophyll and Calcium Gluconate Using the Frequency Device
In an effort to target harmful substances in his body and reduce stress on organs. He will continue to take 2 teaspoons of chlorophyll in water with lemon after each meal. I will capsule the calcium gluconate powder and give him 3 with each meal as well.
THE GOOD NEWSParker’s salt levels and his pH are just fine! This is great news as now I am only dealing with intestinal stress factors and not other risks involved in his body being in an acidic state. I believe his supplements are a huge factor in this, along with using sea salt—as all promote alkalinity even though he has still been having a lot of meats which are acid forming foods.

Definitions of testing terms:
*THERMOGRAPHY-(Computerized Regulation Thermography) This particular device evaluates your body functions by a direct temperature measurement probe instead of measuring thermal radiation. The result is a scanning method that is much more precise than any other thermographic system. It maps out the complete autonomic nervous system as it projects to and from each organ or tissue. With this form of thermography, we can finally see what the body is doing long before it becomes dysfunctional enough to create an irreversible problem. This is not diagnosing disease, but rather identifying the patterns that lead to disease, so that these patterns can be successfully treated. For more information click HERE.

*CHEMISTRY TEST– Through samples of urine and saliva taken 2 hours after eating, this combination of tests determine levels of sugar, urine pH, saliva pH, body salts, albumin, and ureas. For more detail on this test click HERE.

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!