Friday, February 16, 2007
More Books
I just found a web page related to the Specific Carbohydrate Diet. One of the other books I have used is Grain-Free Gourmet. However, the link shows they now have a children's cookbook, something I had not found before! This is wonderful, since many of the recipes seem to be geared toward an adult pallet. I will be sure to purchase the book asap and let you know how well the recipes work for my son. These books also contain recipes for substitute mayonnaise, ketchup, dressings and other sauces.
Note about Breaking the Vicious Cycle
Breaking the Vicious Cycle by Elaine Gottschall does not refer to the specific disorder of Sucrase-Isomaltase Deficiency, and several of the diet recommendations and menus offered may not work for your child. However, I highly recommend you check-out the book from a library or purchase it for reference. The first several chapters (specifically 1 through 6) helped me truly understand the process of digestion and what happens when food or other substances our bodies cannot digest enter the intestinal tract. All the symptoms my son had started to make perfect sense. Even symptoms I have had all of my life in regards to irritable bowel, headaches and other things I thought were attributed to dairy products, I realized may had more to do with my starch intake than anything else. I have provided a link to the author's website, but please feel free to direct your comments and questions to this link as well.
First Recipes
Pomegranate Juice with a Boost
4 oz 100% pomegranate juice
1 oz pure aloe
1 oz flax oil
2 tsp crystalline fructose
1 dropper vitamins
4-6 ounces of purified water to taste
Breakfast Eggs
2 eggs
1 mushroom, chopped
4 black olives, chopped
1 tablespoon fresh tomato, chopped
2 ounces grated cheddar cheese
1-2 ounces whole milk
whisk all ingredients together and cook on medium heat using 1 tablespoon coconut oil or pure butter
Blueberry Smoothy
1/2 cup whole plain yogurt
1 tsp thickn/thin not sugar
1/2 cup frozen blueberries
1 tablespoon honey or 1 teaspoons crystalline fructose
1/2 cup whole milk
blend until smooth, adding ice or milk to desired consistency
4 oz 100% pomegranate juice
1 oz pure aloe
1 oz flax oil
2 tsp crystalline fructose
1 dropper vitamins
4-6 ounces of purified water to taste
Breakfast Eggs
2 eggs
1 mushroom, chopped
4 black olives, chopped
1 tablespoon fresh tomato, chopped
2 ounces grated cheddar cheese
1-2 ounces whole milk
whisk all ingredients together and cook on medium heat using 1 tablespoon coconut oil or pure butter
Blueberry Smoothy
1/2 cup whole plain yogurt
1 tsp thickn/thin not sugar
1/2 cup frozen blueberries
1 tablespoon honey or 1 teaspoons crystalline fructose
1/2 cup whole milk
blend until smooth, adding ice or milk to desired consistency
Wednesday, February 7, 2007
A little History
From birth, my son was small. Exclusively breast fed until 9 months, every time I tried to feed him solid foods, he broke out in a rash. Occassionally, he would throw up for no reason. His size concerned me, as all my other children grew very well. He gained about 1/z oz per day his first 6 months. At his 9 month check up, I asked the doctor where he was on the growth chart and with a double take, she asked me to reweigh him. My hunch was correct...he had not gained any weight since he was 6 months old. At 14.5 pounds, he was small and not keeping a growth curve of his own. He had gone from the 5th percentile to off the charts.
He started seeing a pedetric GI specialist. We put him on a high calorie diet, and did a bunch of blood work. No matter what I did, his symtomps remained the same or got worse. At 5 months, he had started having breath-holding spells, and at 9 months, had his first seizure. This WAS NOT related to his growth problems, and to this date...none of the specialists or doctors he has seem claim it is. However, all the focus went on the neurelogical aspect of my son. He saw several more specialists, all the while my questions about his frequent bowel movements and distentended stomach were ignored or given little weight.
At 12 months, he was hospitilized for neurological tests. He caught a stomache virus (we thought) from the children's wing. After celebrating his birthday in the hospital, he took his first oral dose of siezure medication which he promptly vomited. Two days after discharge, he was nursing every 20 minutes...and I finally gave him infant formula to help hydrate him. Though many of his symptoms remained unchanged at this point, he actually started gaining weight again.
When was 14 months old, he began regularly taking oral medications to control his seizures. Unknown to any of us, this medication is what eventually put him into a state of dehydration that prompted a small bowel biopsy. Though he wasn't hospitilized (I only credit this miracle to the constant prayers and my instincts to limit his solid food in take), he remained close to 16 pounds.
At this time, he had the following symptoms:
He started seeing a pedetric GI specialist. We put him on a high calorie diet, and did a bunch of blood work. No matter what I did, his symtomps remained the same or got worse. At 5 months, he had started having breath-holding spells, and at 9 months, had his first seizure. This WAS NOT related to his growth problems, and to this date...none of the specialists or doctors he has seem claim it is. However, all the focus went on the neurelogical aspect of my son. He saw several more specialists, all the while my questions about his frequent bowel movements and distentended stomach were ignored or given little weight.
At 12 months, he was hospitilized for neurological tests. He caught a stomache virus (we thought) from the children's wing. After celebrating his birthday in the hospital, he took his first oral dose of siezure medication which he promptly vomited. Two days after discharge, he was nursing every 20 minutes...and I finally gave him infant formula to help hydrate him. Though many of his symptoms remained unchanged at this point, he actually started gaining weight again.
When was 14 months old, he began regularly taking oral medications to control his seizures. Unknown to any of us, this medication is what eventually put him into a state of dehydration that prompted a small bowel biopsy. Though he wasn't hospitilized (I only credit this miracle to the constant prayers and my instincts to limit his solid food in take), he remained close to 16 pounds.
At this time, he had the following symptoms:
- failure to thrive
- weight loss
- occassional vomiting
- abdominal distention
- bloating
- irritability (he was still nursing every two hours at night)
- severe diaper rash
- foul smelling bowel movements (4-8 per day)
At 19 months old, the diagnosis of Sucrase-Isolmaltase Deficiency came with great relief! That was 15 months ago. I will continue the story in another post.
Shopping List
Here is my basic shopping list. My son has not eaten a majority of the vegetables due to pre-mature erruption of his molars. Now he is almost three and getting picky! I keep telling him he can only eat 20 foods...he can't be picky, but it doesn't work:)
Check with your doctor and dietician first, but I compiled this list based on my dietician's recommendations. Please note my notes on brands....modified food starch is added to A LOT of dairy products (and tends to be the ones used in resteraunts so beware)! Check ALL labels, as ingredients vary.
Also, if you have all of these foods on hand, it will be easier to follow the menus I will post at a later date.
VEGETABLE (Frozen or Raw ORGANIC if possible)
□ zucchini
□ eggplant
□ spaghetti squash
□ tomatoes
□ onion
□ spinach
□ avocado
□ mushrooms
□ bell peppers
□ broccoli
□ spinach
□ kale
□ cauliflower
□ celery
□ green onions
□ snow peas
□ asparagus
□ parsley
□ leeks
□ lemon
FRUITS (Frozen or Raw ORGANIC)
□ cherries
□ blueberries
□ blackberries
□ 100% pomegranate juice (Costco has the best price in the Langers brand)
□ frozen strawberries
DAIRY PRODUCTS (check for no added modified food starch or maltodextrin)
□ whipping cream
□ cream cheese
□ cottage cheese
□ yogurt
□ eggs
□ butter
□ mozzarella cheese
□ cheddar cheese
□ ricotta cheese
□ whole milk
□ 2% milk
□ sour cream-Daisy
*do not use pre-shredded cheeses, as they all have added potato starch!
Meats
□ chicken
□ ground turkey
□ canned tuna (check label to make sure only water is added! some manufacturers are adding soy flakes now!)
□ ground beef
□ fish fillets
□ salmon fillets
□ pork or lamb chops
OILS and SUPPLEMENTS
□ wheat free tamari sauce
□ virgin olive oil
□ coconut oil
□ celtic sea salt
□ fructose
□ rosemary
□ flax oil
□ fructose based powdered sports drink (also, many of the new Vitamin Waters seem to be safe. My son has had the orange and berry flavors without reaction)
□ pure aloe in drinkable form
(online-expert foods)
ThicknThin not Sugar
□ ExpertExtras RealCream Dry Dairy
□ ThickenThin Not Starch
□ ThickenThin Not Cereal
Check with your doctor and dietician first, but I compiled this list based on my dietician's recommendations. Please note my notes on brands....modified food starch is added to A LOT of dairy products (and tends to be the ones used in resteraunts so beware)! Check ALL labels, as ingredients vary.
Also, if you have all of these foods on hand, it will be easier to follow the menus I will post at a later date.
VEGETABLE (Frozen or Raw ORGANIC if possible)
□ zucchini
□ eggplant
□ spaghetti squash
□ tomatoes
□ onion
□ spinach
□ avocado
□ mushrooms
□ bell peppers
□ broccoli
□ spinach
□ kale
□ cauliflower
□ celery
□ green onions
□ snow peas
□ asparagus
□ parsley
□ leeks
□ lemon
FRUITS (Frozen or Raw ORGANIC)
□ cherries
□ blueberries
□ blackberries
□ 100% pomegranate juice (Costco has the best price in the Langers brand)
□ frozen strawberries
DAIRY PRODUCTS (check for no added modified food starch or maltodextrin)
□ whipping cream
□ cream cheese
□ cottage cheese
□ yogurt
□ eggs
□ butter
□ mozzarella cheese
□ cheddar cheese
□ ricotta cheese
□ whole milk
□ 2% milk
□ sour cream-Daisy
*do not use pre-shredded cheeses, as they all have added potato starch!
Meats
□ chicken
□ ground turkey
□ canned tuna (check label to make sure only water is added! some manufacturers are adding soy flakes now!)
□ ground beef
□ fish fillets
□ salmon fillets
□ pork or lamb chops
OILS and SUPPLEMENTS
□ wheat free tamari sauce
□ virgin olive oil
□ coconut oil
□ celtic sea salt
□ fructose
□ rosemary
□ flax oil
□ fructose based powdered sports drink (also, many of the new Vitamin Waters seem to be safe. My son has had the orange and berry flavors without reaction)
□ pure aloe in drinkable form
(online-expert foods)
ThicknThin not Sugar
□ ExpertExtras RealCream Dry Dairy
□ ThickenThin Not Starch
□ ThickenThin Not Cereal
UNDER Construction
After 15 months of research, trial and error and working CSID into our busy lives, I have decided to dedicate this space to all I have learned. Over the next several weeks, I plan to post bits and pieces of my experience on this blog. I will start from the beginning, so it will involve a lot of back tracking...note the dates I post as the heading coincide with the date I initially wrote down my observations...
My goal is to get this information out there to those who need it. Please be patient as I add all the information I have compiled over the last year or so.
My goal is to get this information out there to those who need it. Please be patient as I add all the information I have compiled over the last year or so.
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