Bittersweet

One thing I forgot to mention yesterday was that while getting on the elevator at Children's, we ran into the family that was on the news the night before (the little boy who was severely burned and has to take baths in bleach). God really provided a wonderful opportunity for my son to see that it really can always be worse. As I was reflecting on what life must be like for them because of our constant contact with water and how severely painful it must be for this 2 or 3 yr. old, it also did remind me of how much our lives truly revolve around food; both of which are critical to life. I can honestly say I look at food in a whole new way, and I know Paul does too. 95% of what is in the refrigerator and pantry are off limits now. What I was taught about eating my fruits and veggies and drinking my milk to stay healthy is so opposite of what we need to do. Now I am encouraging bacon and eggs every morning and to stay away from fruit and most veggies. It is so going against my grain of what "healthy" is supposed to look like. Most of the food Paul, Jr. ate was whole grain cereals or oat bran and a boat load of fruit all of which are now the enemy. Apples, grapes, pears, plums, strawberries, watermelon, and cherries are particularly horrible. Broccoli, Asparagus, tomatoes, corn and sweet potatoes are also off limits. For now, the Dr. wants him to also avoid lettuce, as it is hard to digest. Sadly, I also just found out, fructose is the only known substance that can accelerate the clearance of Alcohol (ethanol) from the bloodstream and provide necessary energy for sperm with their motility. However, toxic effects of fructose in a person that malabsorbs fructose far outweigh any health benefit. Excessive consumption of fructose may increase blood clotting, cardiovascular diseases, hypertension along with the acceleration of the aging process. It may also cause colic in infants (which Paul had) and can cause Diarrhea or IBS (which now Paul has) and may increase the risk of Calcium Oxalate Kidney Stones. Thats not all: Fructose is implicated in some types of Cancer (breast and colon). It may increase Cholesterol (LDL), may cause insulin resistance, increase your risk for Diabetes Type 2, cause a fatty liver, gallstones, fatigue, obesity, triglyceride levels to elevate, can lead to Gout, Depression, Tooth Decay and Wrinkles. It interferes with the body's ability to absorb copper and Phosphorus and may increase Homocysteine levels. If that is not refreshing enough, I found out most people NEVER GET DIAGNOSED or don't find out for 10-20 years later. Most of the healthy population cannot tolerate anymore than 25 and 50 grams of fructose and most don't even know they are intolerant but continue with Irritable Bowel Syndrome, stomach pain, intestinal cramps, flatulence, fatigue, or depression and get treated only for their symptoms. I am thankful we found it. The abstract I just read (thanks Karen) studied a group of people that tested positive on the breath hydrogen test for fructose intolerance over a period of 2-40 months; the median being 14 months and found marked improvement in symptoms in those that followed the strict guidelines of what to avoid in their diet. I do have hope but know it will take a really long time accompanied with plenty of setbacks. God is definately teaching me patience, a characteristic I have longed and prayed to achieve. The earlier joke was "don't pray for patience", but I am thankful for the precious time he has given me with my son for the last 8 weeks. It is a bittersweet blessing. Although, it is a helpless, heartbreaking feeling to see him suffer, and I fear about what to feed him at every meal; God truly is helping me rely on him for guidance. I would have otherwise probably relied on the doctors.

Interesting Day

Yesterday we met with the Dietitian at Childrens. Unfortunately, she really didn't have additional information for us. NO DIET PLAN! She actually asked me to contact her with information I find, because she really doesn't know much about this diagnosis. I waited two weeks for this? UGGGHHH. She did at least have a list of food items with the amount of glucose and fructose in them (from 1987) but at least I know the fruit and vegetable contents. Apparently, if I find foods with equal amounts of glucose and fructose, they may be intestinally friendly (but not always). She told me I can give him white bread, white rice and white pasta even after I told her he is not processing carbs either. She said Frosted Mini Wheats should be fine even though whole grain wheat is the first ingredient and sugar is the second. Wheat, especially when it has been enriched, is not absorbed in the small intestine by a person with fructose malabsortion and leads to the delivery of colonic lumen. Luminal bacteria rapidly ferments fructose to hydrogen, carbon dioxide, and short-chain fatty acids which results in luminal distention, bloating, abdominal discomfort and contributes to IBS (that comes from the American Dietetic Association Journal from 2006). I am sure she is a fine Dietition to modify a regular diet, but my experience has been that whether it be Dr. or specialist; that person only knows what they have studied specifically and not how the rest of the body functions as a whole. The afternoon went much better. We visited the homeopathic Dr. and also sent out the urine analysis. We will gather much more information about vitamins and minerals lacking in Paul's body when the urine analysis is reviewed. He is still very sick, and it will take a lot of time to figure this out. Fructose inevitably will be sneaking into his diet often. It is going to be a matter of monitoring which foods work better than others, and if I can offset the fructose with glucose to help the digestion of it. Please keep praying that he can learn how to swallow pills.

God's Faithfulness

It was a long 3 hours this morning at the Dr.'s office. I have been trying to absorb the information the Dr. gave me and really wish I knew more about the human body at this point. He did a variety of tests on certain points of the body and then had Paul drink some enzymes, wait 30 minutes and then retest him and then repeated the tests with another kind of enzyme. He found that the adrenals responded well to them, but the liver and lymphs did not. I cannot elaborate because I simply don't know enough about the whole lymphatic system. He said Paul is deficient in carbs and protein. The urine analysis and hair analysis can determine exactly what vitamins and minerals he is deficient in and if there is excess metals and mercury present. Paul did have a few good hours this afternoon after the enzymes, but has been on the couch since 4:00. I know God will use this because Dr. Tarr's assistant wants me to keep her posted on everything I find out and wants to share this with other patients that have similar issues. God does know what he is doing even when I want to question him. Jeremiah 32:17 - Ah, Sovereign Lord, you have made the heavens and earth by your great power and outstretched arm, nothing is too hard for you. Psalm 103:2-3 says "Praise the Lord, O my soul, and forget not all of his benefits - who forgives all your sins and heals all your diseases. I believe this wholeheartedly. Thanks to Kristin G. and Donna C. for your wisdom, love and support. Thank you to all who have sent your prayers by email and for your encouragement. He has sustained me all day!

More Tests

The Dr. called yesterday to see how Paul was doing. I asked him to list 5 things Paul can eat besides pineapple. He proceeded to tell me there was more information he needed to share with me but didn't want to overwhelm me with information the other day. He believes Paul is not metabolizing carbs or proteins either. YIKES. At this point, I am in tears, but he said "be strong, this is complicated and very complex but not impossible". He wants to see him tomorrow morning to do more work on him structurally, and then he wants to send me home with a urine kit to collect 24 hours worth. He can gather specifics on that test which can narrow it down some more. Paul really needs to take 6 multienzyme pills per day. He said those out of the 20 are the most crucial for his success. Yesterday, we put 2 in his buckwheat pancakes. He needs his carbs for energy and proteins for muscle. This is explains his weakness and fatigue. I have decided to follow the same diet, so he doesn't feel like he is the only one. Please pray for both of us!