Perseverance

Well we couldn't get into the Diagnostics Center any sooner than April 1st but will be first on the waiting list, however, when my pediatrician called me back, I explained how exhausted he was all weekend after trying to play basketball. She asked if he had eaten anything yet today, and he hadn't because he was feeling too sick to eat this morning, so she ordered fasting blood work to be done to test his cortisol levels as well. She said she didn't test for it before because you have to jump through hoops with some insurance companies to get it covered for some reason (probably the expense because it is a little more complex). Also, he didn't have the dark colored pigmentation which usually accompanies hypocortisolism, but he DOES HAVE ALL OF THE OTHER SYMPTOMS! This will give us concrete information on his blood. We will be seeing the grandfather of diagnostics (brains behind the organization) at Childrens who is nationally recognized for dealing with difficult and peculiar (sp?) situations which will be good timing if this is Addisons Disease. It will give us much insight to the distaster that has developed in his GI tract and all of his other symptoms. I think it can be managed very well (only from what I have read online) and also have hope that the Fructose Intolerance is just a consequence of malfunction in his adrenals rather than a lifelong diagnosis. Your adrenals help your metabolism function (which is his problem with not being able to metabolize sugar, carbs and proteins). I am sure he will need a special diet, but not that extreme. I have a feeling his IBS, stomach pain, fatigue, exhaustion, and nausea will also diminish with proper treatment of his adrenals. If left untreated, Addisons is fatal. Persistance is always necessary if you feel in your heart something is wrong despite what the doctors are telling you. We might have accepted this as our "new" life with Fructose Intolerance with our 11 year old boy completely run down and exhausted with physical pain daily, and can't imagine the consequences of not pursuing it further.

A Push for More Answers

Paul Sr. is going to call the Diagnostics Center today and see if there are any cancellations. We both feel Jr. can't wait until April 1st to be seen. I have called the pediatrician and left a message for her to call me. I want to see if we can get a CT Scan of his abdomen. Apparently, the ultrasound is good for checking enlargement of organs but not at all a good source for picking up tumors. Both of us feel there has to be something that caused this adrenal malfunction. Whatever it is, his organs are just not working in sync. I know a CT Scan has plenty of radiation and can cause harm in itself, but we have to know in our hearts that he doesn't have some hidden problem that was overlooked. Thinking back to the Upper GI; well it took Paul 5 hours to complete the test and he only drank 1/4 of the Barium required because it had strawberry syrup in it and was making him vomit. No wonder it making him sick, it was loaded with sugar. With these circumstances in my mind, how can I be sure the GI test was accurate? Now he is defecating but only a small, small amount. It was never normal for him to even miss one day. Last week, he missed 5 days! He is eating far more food than he is excreting. It has to be totally peutrifying in his system. Truthfully, I think he needs a colonoscopy too. Paul, Sr. said "what if his large intestines are twisted" which of course hadn't even crossed my mind. Would the plain x-ray pick up a tumor or twisting? The pediatrician reassured me in our last conversation that Paul didn't have cancer, and said it would've shown up in the Upper GI or other tests, but we need to free ourselves from these worries and eliminate this as a possibility. If he doesn't have a tumor, the Licorice Root will have its place in healing him with time.

Adrenal Stress Index Results

Paul's Adrenal Stress Index came back today (the saliva testing) and show his cortisol levels are very depressed and low. Low values are a sign of adrenal deterioration which validates the previous findings on the hair analysis. He has chronic deficits in cortisol and/or DHEA levels. The Cortisol release inducers fall into 4 broad categories of glycemic dysregulation, sympathetic overflow, tissue damage/inflammation pain, and mental and emotional stressors. Insulin activity is affected by the stress cortisol responses as well which could indicate the reasons for Paul's other "unexplained symptoms". He had depressed levels for every test - 8:00 a.m., 12:00, 4:00 and 11:00 p.m. Depressed morning cortisol is suggestive of marginal Hypothalamic-Pituitary-Adrenal performance which is why he is EXHAUSTED. Chronic elevation of cortisol antagonizes insulin and may cause functional insulin resistance and cause hyperinsulin responses to carbohydrate intake which lead to pancreatic exhaustion. Paul played basketball Saturday and had a horrible afternoon, evening, and then another horrible morning, afternoon and evening Sunday and into Monday morning. He didn't make it to school today until 11:30 a.m. I thought it may be due to the Buckwheat pancakes I fed him on Sunday or the 1/2 of diet soda I let him have on Sat. While they contributed, the Dr. thinks it was because of his adrenals and the extra energy it took to run up and down the court. His body just simply couldn't recover. He tried to explain what happens when the adrenals aren't functioning and how the digestive system can get out of whack with bacterial degradation, etc., and lost me about 5 minutes into the conversation. He called it Hypocortisolism. He gave him Licorice Herbal Supplement and Eleuthero Extract. Paul will also need to start taking DHEA (which I am going to research). Licorice is used to promote vitality and supports the adrenal glands and liver.

Diagnostics Center

The pediatrician doesn't have an explanation for other symptoms not GI related. She admitted Paul is her first case of Fructose Intolerance and doesn't know much about it. She referred us to the Diagnostics Clinic at Childrens. His appt. is April 1st. He is out of bed most of the day but still feels bad. I think he is improving, especially since he was able to go back to school after 10 weeks. Friends are good medicine. The teachers have been very supportive too. We are thankful for our family and friends who love us so well.

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.