Milestone

The last few days have been a very difficult transition for Paul to go back to school. He still feels miserable, but especially bad in the mornings. This morning his whole entire body was hurting, so I rubbed his legs and back to try to alleviate his discomfort. He begged me to let him stay home, however, as the day goes on he does get used to it and usually feels a little better. I picked him up for lunch and then stayed at school while he finished the rest of the day. He did pretty well. I have also been giving him IntestiNew which is a powder formula to heal his intestinal lining hidden in a smoothie consisting of 1/2 banana and Oberweis milk. I do have really exciting news. He swallowed his first pill today!!! While it was small, he is starting to get the feel of it and making progress. Thank you so much for your prayers.

Progress and Diet Discoveries

I am happy to report Paul went to school for 2 hours today (with me in the room) and then was tutored after school for an additional hour (while I went to Whole Foods). He held out pretty well this afternoon and said he wants to try going tomorrow morning (even P.E.)! He is still feeling stomach pain and nausea and is constipated (4th day) but is willing to try despite those difficulties. We talked about the fact that he can feel awful at home or at school, and at least at school he can see his friends. He is a little humiliated about the restroom situation and we are not sure how that will pan out, but he has persevered through so much, and I am really proud of him. On the dietary front, we found out bacon from Subway is cured in sugar and that romaine lettuce has twice as much fructose as glucose (bummer). I thought he could eat Caesar salads. Each new discovery helps in his diet dilemma. Someone asked me what he is eating and I replied "chalk, drywall and a little bark"! Although, there are more and more things we are discovering. We have found all natural peanut butter cookies made with brown sugar which seems to be okay. He is NOT doing well with any fruit except rasberries (small amount) and bananas (which are 75% glucose). Donuts are okay too because sucrose (table sugar) can be tolerated (1/2 glucose and 1/2 fructose in small amounts). CRAZY. Some high fructose corn syrup he can tolerate if it is 1/2 glucose and 1/2 fructose. The problem is not knowing the ratio, and I don't want to take risks at this point. I found some glucose tablets online at amazon.com today, so maybe we will experiment. One slice of white bread is ok. We are using all natural peanut butter and he can snack on most nuts and can eat a small amount of celery (1/2 and 1/2). Corn chips are okay too with guacamole (although he hates it). He can also have Cheerios and Shredded Wheat for breakfast (although most of his diet is restricted to the Celiac diet for wheat products). We have found he doesn't do so well with oatmeal (which I don't understand yet). He can have organic white flour tortillas with cheddar cheese, which is what I will bring him for lunch tomorrow. We had a delicious meal delivered to our front door today of homemade mac and cheese and roast beef with some fat free jello and steamed veggies. Paul could eat the mac and cheese, roast beef and jello. It was a home run dinner! We feel so loved. Also, I think he will be able to get into the Diagnostics Center at Childrens (not sure when yet). They specialize in handling patients with unexplained symptoms, like the weird symptoms that seem unrelated to his digestion issues. We should also get the urine and saliva analysis results from the homeopathic Dr. shortly, which may be able to piece some more of the puzzle together. I will be glad to learn about specific enzymes geared to helping him digest carbs and proteins at least.

Corn Syrup History

In the mid-1800s, hydrolysis (acid converting) was applied to cornstarch to produce corn syrup. Then, in the late 1960s, an enzymatic method of conversion was developed that increased the amount of fructose in the syrup which changed the proportion of fructose to glucose in corn syrup. Some of the glucose of the corn syrip is converted to fructose. Today, it is estimated that high fructose corn syrup is 40-90% fructose. The number of products on the market are into the thousands that contain high fructose corn syrup. Yogurt, baked goods, crackers, drinks, soda, pancake syrup, jams, ketchup, energy bars, lunch meat, cold cereals, canned fruit, salad dressings, hamburger and hotdog buns, prepackaged cake, bread, and muffins, etc. This information came from "High Fructose Corn Syrup and the Fibromyalgia Connection". For a person fructose intolerant (difficulty digesting), instead of digesting the fructose, they produce hydrogen and methane gas which causes pain, gas, bloating, gurgling or diarrhea. Fructose is the simple sugar found naturally in fruits and many vegetables and the main ingredient in high fructose corn syrup.

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!