Worth the Exhaustion

Yesterday's party was so awesome! Paul was so happy to have his friends over and see them for more than a few minutes. He even served the cake! It was a long day though, and last night he didn't feel so good. His legs were really hurting and so was his stomach. Monica came to babysit, but Paul didn't want us to leave and play tennis, so we stayed with him and Monica took Lauren and my nephew to the mall. I was exhausted anyway. One of our Doctor friends that came to pick up his son yesterday had some interesting news for me. He said if the Dr. did an Endoscopy and Upper GI, surely the stomach would have shown up as being in the wrong place. He assured me that it couldn't possibly be in the diaphram. This has me thinking way too much this morning. Obviously, I shouldn't jump to conclusions but I know the Dr. felt something in there because he worked more than 15 minutes to push it down. This is weighing heavy on me today. If not the stomach, then what was he feeling and pushing?? I am going to call the Dr. and see what he thinks. Also, he gave me about 20 different pills for Paul to take every day. Paul doesn't swallow pills, so we have been trying to crush them into food and water. We were 3 for 20 yesterday. He needs to get vitamins in his body, especially the B Vitamins. We got the hair analysis after Lauren's party in the afternoon and should get results back on that in two weeks.

Long Road

God is using my impatience and your prayers in a good way. I couldn't sit around and wait until next week watching this child deteriorate before my very eyes before we can even get a nutrition plan for him. Neither the Pediatrician or Dr. Tarr could give any helpful advice on what to do (except read labels) and couldn't tell me if Buckwheat pancakes are okay and had zero answers on pasta. I found out not all manufacturers are required to list everything on the labels. Paul is down to 96 from 102 in 5 weeks. There has to be a reason for this diagnosis. There is ALWAYS a root cause. That has been HEAVY, HEAVY on my heart. Your prayers are paying off, because a total stranger at Starbucks yesterday overheard my concerned friend inquiring about Fructose Intolerance and intervened to tell me about her Dr.s and what they have done for her many ailments. I came home and made the call right away but got the answering machine but explained the situation in a nut shell and pleaded for help. They called back and got me in yesterday afternoon at 4:00. Usually, first time patients can't get in for weeks (I know this from first hand experience!). I filled out the most extensive paperwork known to mankind. Normal consultations take about an hr. This Dr. spent 2-1/2 hours with Paul. I have NEVER seen anything like it. This Dr. took his blood pressure in three different ways. Standing, sitting and lying down. He could tell me what his blook pressure is supposed to be doing and found out Paul's is not doing anything it is supposed to be doing. Sitting was a 92. Standing was a 92. Lying down was 102! From sitting to standing, it is supposed to go up 6-10. It stayed the same. From standing to lying, it is supposed to go down 6-10. Paul's went up 10! Then the Dr. turned off the light to check his pupils. Of course, they dialated when the light was turned off, however, when he flashed the light in his eyes, they are supposed to constrict and stay constricted. Paul's were pulsing back and forth from dialated to constricted and could not hold their position. This told him two serious issues going on with Paul between his blood pressure and the light tests. First, his adrenals are not working properly and second his kidneys are not able to do their job either. He further examined Paul and explained exactly how our bodies work and gave him specific exercises to do (neurological ones). Paul was very challenged in that area as well. He practiced a few exercises, and discovered that Paul's brain is not sending messages to certain parts of his body, therefore, making him awkward and off balance (issues he has had all his life). He also examined Paul further to find his stomach is actually in his diaphram! NO WONDER IT HURTS. At this point, I am really ticked at 3 other Dr.s! You would think with an Upper GI, Endoscopy, several exams that someone would have known this. CRAZY! We are going back for a hair analysis to find out more about the adrenals and also certain vitamin deficient issues that his body cannot metabolize. He is also going to help us NATURALLY detox the body of the decaying rot inside of him. This Dr. was able to tell me what wheat, dairy and carbs would do to him right now and to avoid at all cost. While this all may seem dim, I have hope that we are on a much better road and in good hands. I am thankful to Dr. Tarr for finding the horrible chemical reactions going on in Paul's body to be intolerant to Fructose and for your continual prayers in this situation.

Meal Planning

I am hoping buckwheat pancakes will be okay to feed him. I gave him oatmeal last night, and he was sooo sick doubled over in pain with frequent trips to the restroom. Today wasn't much better. We started with eggs and tea for breakfast and I gave him a piece of whole grain toast (which now realize was awful too). For lunch, he had pineapple (which is supposed to have equal amounts of glucose and fructose) and a salad with cheddar cheese and buttermilk dressing (didn't do so well with that either) and now he is having buckwheat pancakes with absolutely no sugar. He actually likes them which is a blessing if they end up being okay to eat. This is really challenging, but I know God is faithful and won't give us more than we can handle (even though I am looking at all that desperately needs to get done)! I need to start being okay with a mess everywhere and laundry that doesn't always get done and dinners that can't be made every night. I am wearing a lot of hats right now, but the main one needs to be getting the right nutrition for Paul. Feb. 19th seems so far away to talk to the Dietician. The Dr. told me today some kids wait weeks and weeks and weeks.

Meds

I have looked up active and inactive ingredients in his Prevacid (prescribed for Reflux). Apparently, he cannot be on it. It has crystalline fructose and mannitol.

Fructose Intolerance

We have an appt. Feb. 19th to discuss meal options for Paul. I have been doing extensive research on this rare disease. Basically, it is a disease of the metabolism of fructose due to the absense of the enzyme that breaks it down. There is a lack of special cells on the surface of the intestine that are not available to help in the aid of digestion. As a result, fructose accumulates in the liver, kidney, and small intestine and the body is unable to convert its energy storage material into glucose. If untreated, the blood sugar level falls and there is a formation of harmful substances that damage the liver and can be fatal. This might explain his jaundice and sometimes yellowish tint to the skin. Apparently, this is very difficult to diagnose, so praise God we actually found it. It is only discovered in approx. 1 in 12,000-58,000. I need to be tested to see if I have it. If it is inherited, it is lifelong. If it is not, there is usually a better outcome. There are no medications to cure it, and basically it is found in most meds (sucrose and sorbitol), so we may have issues if we need meds for something else. Also, it is what the hospitals give patients interveniously. There were NO BOOKS at Borders on the subject, so I will be searching more online. Fructose is found naturally in almost all fruits (but especially berries, cherries plums, apples), fruit juices, sports drinks, some vegetables such as carrots, tomato, corn, sweet potatoes, breads (especially grain but any type), pastas, rice (white and brown), dairy including yogurt, anything processed in a can or package, cake, ice cream, cookies, jello, honey, molasses, Sorbitol, Stevia, cereals, catsup, jams, jellies, any kind of corn or corn syrup, sugar, sucrose, brown sugar, agave syrup, Carob powder, maple syrup, Dulcitol, brown rice syrup, grape syrup, dextrose, Wasanbon, whole meal flour, and meats that contain sugar, etc. etc. Eating out probably won't be an option. We just took a trip to the store, and Paul is realizing virtually every aisle not an option. It is shocking to realize what we have been putting in our bodies. It is scary to think not many people know about this and could be the cause of many ailments in our country. A high fructose diet is linked to fibromyalgia too.

Paul's Sickness

After pestering the Dr's office again today, I finally got the dreaded results I was hoping would be negative. Paul is in deed fructose intolerant. We will be getting hooked up with a Dietician to find out exactly what steps need to be taken, but from what knowledge I do have, fructose is in EVERYTHING! He is very saddened by the news because he loves fruit and bagels among all the other obvious foods. I have tried to encourage him that it can always be worse, and at least he doesn't have cancer or leukemia. This is something to be embraced and we just need to put one foot in front of the other. Please pray that he will acquire a liking for meat. All of his meals will have to be cooked in separate pans and served on separate dishes and have to be given to him in another room. I was also warned that in about 1/2 the cases, the strict diet will help the symptoms and the patient gets better, but in the other 1/2 of the cases they do not. Please pray he sees results and can get back to normal activities soon. The cake is already ordered for Friday's party, and he knows he won't be able to eat it or the pizza. Please pray for his acceptance and for my heart to stay strong for him. Thank you and God Bless.

My apologies to all of you who have called and not gotten a return phone call. I am a bit overwhelmed right now. Paul had a pretty bad day overall. We spent four hours at the hospital for his test and by the end he started feeling awful. We were promised to hear something back about the results today, and of course the office is now closed and no word. I am afraid to feed him anything. I don't want to poison his body further if it is an allergy to glucose. In response to a few different emails regarding my auto immune deficiency, it is very possible for him to have the same issues, however, we have very different symptoms. A few of you also asked about Crohn's Disease which would require a colonoscopy, and the Dr. apparently at this point does not want to do that. He also said the reason they did not do a CT Scan is because of the severity of radiation to the body. I researched Crohn's and did get very unsettled because a lot of the symptoms (except blood in the diarrhea) are similar, but I suppose if the rest of these tests come back negative, they will move forward. It is extremely hard for me to keep waiting. It seems like time is standing still. We are going to work on some more math problems now. I have to say we are definately getting a good education!

Paul's Sickness

I am very thankful for all the blessings we had yesterday. Paul played pretty much all day with his cousins and was able to enjoy the beautiful weather. Lauren enjoyed her end of the season socccer party and a playdate, and I was able to visit my uncle in the ICU at Missouri Baptist for the first time since he was admitted January 2. Please pray for his strength. He just received blood the other day after another surgery. While I was there, I visited with two of my awesome aunts whom I miss dearly. The evening ended with a date to Wildhorse Creek Grill with Paul, Sr. When we returned from dinner, Paul, Jr. was feeling bad. His cheeks started getting flushed around 5:30 (during Lauren's basketball game) and by 8:00 he was back on the couch. He slept pretty well until a few minutes ago. He said he feels horrible, and he has the chills along with his stomach pain. I am very curious what is different about a CT Scan vs. an Ultrasound and x-ray because that and an MRI are about the only things Paul hasn't had yet. I am really praying he is not glucose intolerant because he is really not a big meat person, and glucose is in just about everything. Today will be difficult to try to get him to eat. Basically all he can have is meat and water and a little fruit juice. No carbs, no fiber, no grains, no beans, no dairy. I suppose he will live on bacon and eggs. So many of you have offered to do something or bring a meal, and right now the best thing you can do is pray.