Getting Back to "Normal"

Well, even with the call they were not able to take Paul to the Endocrine specialist until June (earliest). They have thyroid cancer patients waiting to be seen. They are overwhelmed. The pediatrician said she could give me a name of a friend of hers in Endocrinology at St. Johns but said she really doesn't think it is an adrenal issue (even after looking at the paperwork from the homeopathic Dr., or should I say especially after looking at the paperwork). I know the fields are "enemies" when it comes to treating patients. She told me she ran all of his blood work for most of the same things and found no major issues. She also recommended going back to Dr. Tarr. She said he could run all of the same tests as the Endocrine specialist anyway but most of Paul's issues are digestive and to stick with the G.I. department. She told him he may feel bad into his adult life and that this is something he is going to have to live with for a long time, but that he should get back to as much as a normal life as possible including school and asked if he has had any fun lately. You should have seen the confusion on his face. I thought to myself "if he was having any fun, we surely wouldn't be sitting here right now". She told him the longer he waits, the more scary it will be. She said "this is an illness you are going to have to live with and shouldn't let it dictate your life". She has a point (even though I totally didn't want to hear it). I will be encouraging him to get back to "normal" even though he feels horrible most of the time. We made an agreement to try an hour of school on Monday.

God's Plan, Not Mine

Psalm 27:7 "Hear my voice when I call, O Lord; be merciful to me and answer me". Psalm 28:6, Praise be to the Lord, for he has heard my cry for mercy. The Lord is my strength and my shield; my heart trusts in him and I am helped". I called and left a message and plea for the Endocrine specialist at Childrens. I found out their next available appt. to see Dr. Hollander as a new patient is not until July. I have prayed and cried out to God for help. He has listened. The Endocrine specialist called the pediatrician's office yesterday to converse about Paul's situation. We had already made the appt. for today to see the pediatrician. She was going to order more blood work to check insulin levels. After discussing Paul's needs, the Endocrinologist's office are looking into the overflow clinic on Wednesdays which takes special needs patients. The pediatrician is going to page one of the directors today to see how soon we can get him in! I am praying for a miracle and believe God can do anything he wants. If you are reading this, please stop and pray specifically for God to put a sense of urgency into the doctor's heart. Psalm 30:2, "O Lord, I called to you for help and you healed me". I have to accept what I hear today; please pray for my acceptance as well. It is very hard to wait and continue to see him suffer.

Hair Analysis Results

We received the hair analysis results for Paul and discovered a little more information for the 1000 piece puzzle. He is a very slow oxidizer which can explain the carb and protein deficiency. His body does not metabolize in a very good fashion which can cause a wide range of symptoms. Also his NA/K ratio is very low which explains his exhaustion and decreased immunity issues. We also found a copper toxicity which can also cause a wide range of problems. Zinc and copper are supposed to work together to offset one another (I think) and in his case aren't. He has low sodium, low potassium, low iron, low magnesium, low chromium, low selenium and a high level of toxic metal aluminum. All of this combined causes great havoc in the body. He is not able to take nourishing food and turn it into energy. He has impaired digestion (which we already knew but weren't sure how severe). His adrenals are totally malfuntioning accompanied with some serious neurological problems (i.e. weakness and numbness in the legs, shivers, dizziness). We are doing the saliva test today to get even more detailed information. Paul and I have discussed the Mayo Clinic and St. Judes, but first want to try an Endocrine specialist at Childrens. I put a call in today to see Dr. Hollander. If all else fails, I will be looking into the biochemical geneticist (www.geneclinics.org) at Wash U. Also, we have an appt. with his pediatrition to have more blood work done on Sat. to check his insulin levels. Yesterday was not fun. Paul had severe dizziness all day along with his usual stomach pain and nausea. He was unable to read or watch TV and was in the fetal position for several hours. He experienced complete failure in his legs the night before and was unable to move them or walk. Today was a much better day; he was able to get some school work done and even go to dinner at grandma's to celebrate his uncle's b'day and seemed to have more color in his face. Thank you for your continued prayers. I feel the Lord's continual peace in my heart despite his condition. Without God I would be a basket case!

New Discovery

Paul had a pretty good stretch of feeling well enough to be off of the couch on Sat. but had a pretty good stretch of bad (weak) yesterday. He only had about 1 hr. total off of the couch. I discovered Crest's first ingredient on their label is Sorbitol (a sugar alcohol) that creates similar symptoms to fructose. The dentist always told me his "yellowish" teeth were due to all the antibiotics he took as a baby. Maybe the reason they are decaying is because he is not able to absorb the sorbitol. We will be looking for new toothpaste after our Dr. visit tomorrow. Wow, now my worlds are suddenly colliding. Last year at this time, I was doing research on Prevention mouthwash for my business because the government wants to set new regulations on alcohol ingredients on a variety of products due to their adverse affect on people. Prevention is one of the few companies out there that has a "no alcohol" mouthwash which I wanted to promote along with my "all natural" wipes to the hotel industry. Certain alcohols have been linked to learning disabilities and many other neurological disorders. Other sugar alcohols include maltitol, mannitol, xylitol (which you find in gum a lot) erthrytol, and lactatol. It can be found in Diet soft drinks, sugar-free gum, sugar-free jams and liquid medicines. I was frustrated not to see results adhering to this strict diet for the last three days, but it is literally in EVERYTHING!

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!