Three Steps Forward, One Step Back

Sorry I haven't updated this blog in a while. I am still trying to sort through anger, grief and frustration. While Paul is improving, he still has many moments of feeling miserable. Our last Dr. visit (May 4th) indicated Paul's lungs and liver were not doing well, so the Dr. decided he needed something stronger than just the cleanse four times per day and put him on Alinia twice a day for three days. This is a heavy-duty drug to kill Cryptosparidium. Apparently, the cycles are very hard to catch and kill. He got terribly sick while taking it and missed four days of school. He has to wait three weeks and do it all over again for three more days, so we are not really looking forward to next week. Paul has had more good days than bad and is able to eat a wider variety of food. We also found out he is allergic to green beans, tuna, cod, beans, and the big one is YEAST. The parasites cause the food intolerances which hopefully will be temporary. I met with a dear friend for coffee the other day and she gave me "The Message of Job" by David Atkinson which is a very healing and comforting book. She said "you know, the emotions you are experiencing are very normal, but the trouble with our society is people really don't know how to lament". Repressing feelings is unhealthy. There is a grieving process to walk through. Glad to know I have only lost a few marbles. I am thankful to see improvement and know it could be much worse. We are thanking God for many reasons especially living in such close proximity to school. I am there 5 times a day. The last day of school will be a HUGE celebration. I know through the process of affliction there can be deliverance. God can heal him any time he is ready. We are waiting as patiently as possible for his timing. One of the highlighted pages in this book states "It is one of the fundamental contributions of pain to make people wake up to a deeper quality of existence and to seek evidence for meaning in their lives beyond the immediate sensations that arrest their attention". Oh how true. I am sooo busted. Learning deeper things of God has been a tremendous blessing. My new moto is try not to sweat the small stuff and try even harder not to sweat the big stuff! It is all temporary....and someday will come without pain and suffering. Plucked right out of the cares of the world and right into his daily presence.

Mistake in the Blog

Sorry, the scale was 1-100 not 1-10.

Meridian Assessment Test

Well after two hours at the doctor's office, we have discovered valuable information about Paul's condition through the Meridian Assessment Test. There were 40 different points the doctor tested to check energy flow through Paul's body. He was able to check all organs, lungs, heart, circulatory, etc., and found out Paul failed 37 out of 40. Paul's throat and lungs were especially low. Normal is anywhere between 45-55 on a scale of 1-10. Most everything fell in the 30's and some in the 20's. The doctor believes a parasite is playing the role for all of his complications. He put him on a parasitic cleanse four times per day for one month along with a few other things for his sinus infection. He told me to take him off the antibiotics immediately, because they will tear up his stomach. Paul will continue with the probotics too. Dr. Yu ordered blood work to find out exactly what foods Paul can tolerate and if there are specific food allergies. I am thankful we decided to persevere and dig deeper but sad Paul has had to endure all of this for so many months. Apparently, parasites can be very hard to detect through the bowels, but I am frustrated that we tried three times and all of the labs came back normal. They have caused a lot of neurological, circulatory, bronchial, intestinal, throat and sinus issues for Paul. I hope they haven't traveled too far and that this cleanse works. It is so disheartening to see him so miserable some days. It is easy for me to get irritated about the situation, but the Lord is in control. God used me to help someone whose sister-in-law was diagnosed with glucose intolerance, and I was able to encourage her to look for more answers and shared about specific enzymes that could help her today. I know nothing is wasted in the sight of the Lord, and he uses every second wisely. Paul's follow-up is in two weeks to find out about the food panel test.

Experimenting

I gave him fruit alone at lunch (mostly Clementines) and he seemed fine. Again, after school he ate fruit alone (grapes for the first time in about 4 months) and some more Clementines. He is doing pretty good. Tonight is the real test. I made a brown rice with shallots, peppers, peas, tomatoes, garlic, and vegetable broth. Most of those are taboos according to the Dietician. Hopefully, he won't be miserable later. I found out not to mix chicken and rice (which was the original plan for dinner). The chicken will now go over a bed of lettuce instead and be eaten separately. It would be just awesome if this works.

Food Combining

Paul ordered a few books online on acidity and alkaline food combining. People who have suffered tremendous amounts of pain have given personal testimonies of their success by following a few simple guidelines. We thought we would give it a whirl since we have already tried just about everything else under the sun. One main helpful hint in this book said to eat fruit in abundance, but just do it alone. Fruit is mostly water and moves pretty fast through the body. The problem is when people eat fruit with other foods. The fruit gets stuck and starts putrefying in the gut causing symptoms. These symptoms can be eliminated by eating fruit alone. I know it won't be life threatening for Paul to try it. He didn't get relief eliminating the fruits that had more fructose anyway. I may give him a glucose pill and go for it today at lunch. It said wait 20 minutes before introducing another food. The book also stated not to mix meats with starches, so forget the meat and potatoes (which is exactly what he was told to eat). His whole diet is pretty acidic right now. Getting the food panel testing will also be beneficial to find out if he is actually "allergic" to anything in particular. He has been feeling better on the antibiotics and probotics, however, the symptoms always return after the he is off the meds. Hopefully, the advice in these books really works.

Going Back to the Basics

After doing more research on Irritable Bowel Syndrome, Paul and I have discovered some interesting information regarding acidosis. Our bodies are constantly trying to neutralize the acidity and alkalinity levels in our bodies to maintain health. If we have too much acid build up over time, this can cause serious illness and disease. It is vitally important to have a proper ratio between acid and alkaline foods in the diet. Alkalis neutralize acidity in the body to maximize resistance to disease. I am researching alkaline and acid forming foods. Most of Paul's diet right now consists of acid forming foods. I am also researching the sympathetic and parasympathetic systems. I have found out Paul is a slow oxidizer and sympathetic dominant. Fast oxidizing foods and nutrients should be a part of his diet which include niacin, magnesium, folic acid, Vitamin C and generous amounts of leafy greens, fruit, broccoli and potatoes. This would explain all of his complications including weakness and fatigue considering he is not supposed to be eating the leafy greens, fruits and broccoli along with the alkaline foods including carrots, raisins, cantaloupe, watermelon, apples, grapes, peaches, etc. He is now eating all acid forming foods like chicken, organ meat, nuts, natural cheese, and eggs. All fruit juices (natural) which we were told to avoid are highly alkaline. I am going to discuss options with the new MD/homeopathic Dr. after Paul's Meridian Test to find out our best options for his diet. It just seems ridiculous to me to cut everything out God created for our bodies to be healthy. It also makes sense that he would be experiencing the IBS since he is missing all of the fiber from the fruit.

Follow Up Appt.

We had a follow up with Dr. Tarr today to discuss options for pain relief and IBS. Dr. Tarr gave us some research on Peppermint Oil to relieve symptoms as an alternative to more antibiotics. I was so impressed! I bought some from The Natural Way along with a special enzyme formula to help break down carbs, proteins and fats. I am hoping the combination will help Paul be able to tolerate a broader range of food. We also have an appt. to see Dr. Simon Yu next week who is an MD and a homeopathic Dr. which marries the best of both worlds for Paul's situation. We are going to get him tested for a variety of food sensitivities which help relieve some anxiety about what to put in his body. Dr Yu has an awesome and informative website and gives talks once a month of various topics of illness. This Dr. wants to find ultimate causes instead of just treating symptoms. He will also be able to read everything from the medical world that has already been done. We want to give Paul options without being on antibiotics. Paul, Sr. is now okay with trying the Licorice Root for vitality and energy. I am hopeful this will help Paul's weakness and fatigue. Maybe the Peppermint Oil will give his stomach some relief and the enzymes with help with digestion. We are also seeking some counseling, so he can talk to someone about all of the hardship he has endured over the last four months.

MRI Results

The MRI results showed his pituitary is fine and his brain is fine but found a massive sinus infection. The pediatrician wants to put Paul on a three week dose of antibiotics. She said not to worry that this is indicative of PI. She doesn't believe from his previous blood work that he has PI. She did say kids with PI have significantly lower white blood cell counts than 3.2 and are unable to make new ones. I desperately want to believe her. The sinus infection was the ONLY symptom of PI that Paul has not experienced. I have to trust she knows best. We have a follow up with Dr. Tarr at Childrens on Monday to go over options for stomach pain and IBS relief. We are also going to look into doing a food allergy test that identifies specific foods he may have reactions to eating. Maybe this will be helpful in identifying exactly what he needs and help relieve some of his symptoms too.

PI, Fructose Intolerance and the MRI

I called the pediatrician yesterday to ask her about PI. She had never heard about it. She asked me to fax over the information that I had and told me she would get back to me after doing some research herself. She said Strep Throat would not be considered one of the infections that would count. Even without the Strep Throat, Paul definately qualifies symptomatically with the bronchitis (twice last year) and ear infections (although most of those weren't this year, they were during infancy and toddlerhood). I am hoping she calls back today to tell me PI is NOT IT. It is just so hard for everyone to believe and understand why someone wouldn't have the ability to process a simple sugar. Most sugars have been completely eliminated for 6 weeks or so, and Paul still experiencing a tremendous amount of pain, nausea and misery. Paul Sr. and I both have been researching Fructose Intolerance. We both read even normal functioning individuals can't tolerate more than 35-50 g of Fructose. They gave Paul 45 g for his test. It just doesn't make any sense. 1/3 of us would probably flunk the test. I will wait to hear back from the pediatrician. His MRI went well last night. They said he may be dizzy today, so he is staying home this morning. I will post as soon as we hear. I don't suspect the pituitary to show anything though. It wouldn't be causing all of these GI issues.

Is it Coincidence?

Yesterday, my sweet friend was asking me if I know anything about PI (Primary Immunodeficiency). Of course, I haven't heard anything about it and got too busy to even mention it to Paul Sr. Last night, he came home with information from his brother on PI. Is it coincidence? I read the disease description and signs and symptoms and immediately felt confirmed in my heart "THIS HAS TO BE IT". I don't want to jump to conclusions, however, after reading the information from INFO4PI.ORG, it explains literally EVERYTHING that has been going on with Paul. It said the disorder first presents itself as recurrent bacterial infection at infancy, then early childhood, and during puberty and then much later in life. Paul had chronic ear infections as a baby and toddler with finally getting tubes (twice) to correct the problem. He still doesn't like to get in a swimming pool because he knows he will get an infection. He gets repeated bronchitis during fall and winter months every year and this last year is when the Dr. put him on Singular to get him through the winter. He had at least 7 bouts of strep last year back to back with only temporary relief on the meds. This year he has been complaining of "his whole body hurting" but specifically is knee and ankles. He has EVERY symptom of the gastrointestinal issues since this summer but EVERY DAY since December 19th. Some patients can develop auto antibodies which can attack and destroy white or red blood cells. The gastrointestinal problems can impair normal growth and weight loss which has already happened. The big one that really put it together in my mind was the fact that most of these people are unable to absorb sugars (Fructose) and/or fats! Other patients develop overgrowth of intestinal lymphoid tissues. The reason: B-cell defects. We should have gone to the geneticist. Complications include recurrent infections, damage to heart, nervous system (hmmm, this might explain the weird neurological symptoms of dizziness and numbness in the legs) or digestive system (which we already know has been the worst), slowed growth or weight loss, and increased risk of cancer. I did a little more research before bed and haven't been able to sleep all night. This would answer all of the problems that are such a mystery. Treatment would include intravenous gammaglobulin doses every 3-4 weeks. In other words, a healthy donor's blood to restore normal antibody levels (which does not usually replace the antibody deficiency but helps with symptoms). The other option may be a bone marrow transplant or continued use of antibiotics to fight infections. While he is symptomatic in every area of this disease, these would have been serious red flags to the doctors, right? The Dr. isn't really concerned about the low white blood cell count, the chronic infections, and the stomach problems and has never had a case of Fructose Intolerant to really know what is "normal" for the disease. I am going to put a call into her tomorrow to rehash all of his blood counts to see if he had abnormal levels of immunoglobulin (infection fighting proteins) because abnormal numbers of certain cells can indicate an immune system defect. I don't want to jump to conclusions. We know his white blood cell count dropped in half from January 30th (6.1) to mid March (3.2) but if she is not concerned; then in my mind that is a good thing. God answers prayers in mysterious ways. I will ask that you please pray for answers. If it is indeed PI, then I will just ask for COMPLETE HEALING. Okay, I'll beg.

More Results

The urine analysis came back showing no copper toxicity in Paul's body. The rest of the blood work came back okay as well. The MRI is scheduled for March 31st in the evening. We are not expecting to find anything because the cortisol levels look fine. We are thinking his exhaustion may be due to a Vitamin C deficiency commonly found in patients with Fructose Intolerance. There are not meds out there to relieve his symptoms because all of them contain ingredients he can't tolerate. I am going to try the glucose tablets this week before he eats any questionable foods. He is still struggling with a lot of pain, however, he has made significant improvement since the diagnosis. He is not bedridden and curled up in a ball like he used to be. He does have those moments but they are less common. We are also looking into getting him some counseling to deal with this disease. The Dr. mentioned when a person is sick for this long, sometimes people get anxiety and fear about what is going to happen to them. The psychological factor can play an even greater role to either make it better or worse. We have noticed a significant amount of anxiety over the last few weeks. He has been fearful of things that were never a previous concern. He is also experiencing shortness of breath sometimes and occasional headaches. Our prayer request specifically would be finding a counselor to minister to him and help him with his fears and emotions to deal with all of the aspects of this major change, asking for pain relief, and finding joy in the midst of his suffering. We are so thankful for all of your support and love.

Hospital Stay and Some Results

When we arrived Tuesday, Childrens had no record of arrival or room reserved for us. We had to get the reservation form from Dr. Tarr's office because the pediatrician was on vacation. When they finally got everything straightened out and sent us to our room, the resident informed me she didn't have Paul's medical records and no authorization from the Dr. on the floor about what they were supposed to be doing. Fortunately, I had just gone to three places the day before collecting all of his records from three Dr.s. I gave them to her to review, and it was in the pediatrician's notes what they needed to get done. She was able to get the tests coordinated except for the MRI because they were already booked for the next two days. They don't schedule them until the patient is physically in the room. Paul got a late start on the urine collection, but it worked out. We will get results in a week or so. We are scheduled for the MRI on March 31st as an outpatient. Some of the blood work already came back on Paul's cortisol levels. The Dr. said he passed with flying colors, and that the records he reviewed from the other Dr. were in comparison to an adult. He said there is not sufficient research out there on children. They don't suspect any of the other blood work to come back with problem. Paul is quite a mystery at this point. The Dr. said if the urine shows copper toxicity, this can cause a lot of problems for the liver but didn't indicate this to be a cause of severe abdominal pain or nausea. They haven't done a colonoscopy because the endoscopy and upper GI give no indication of Crohns or colitis. The therapist was helpful in acknowledging the difficulties associated with adjusting to this new way of life. The Dr.s are not familiar with fructose intolerance and don't have any explanation as to why he cannot process sugar in its simplest form, but we are to stick to his fructose free diet at least for now.

God Said No

I just received a good email about God saying no. I will share a little of it. I asked God to grant me patience, God said no. Patience is a byproduct of tribulations; it isn't granted, it is learned. I asked God to spare me pain, God said no. Suffering draws you apart from worldly cares and brings you closer to me. I asked God to make my handicapped child whole, God said no. His spirit is whole, his body is temporary. I asked God to help me love others the way he loves me, God said Ahh, now you are getting the idea. We really need to focus on what God wants, not what we want.

Helpful Information

A dear friend that has been reading the blog who has been diagnosed with Addisons has given me so much helpful information. She asked me to have them test Paul for the antiadrenal antibody for his am fasting bloodwork. She said it checks to see the if Paul's adrenals are under attack from a genetic autoimmune antibody typically passed through the mother to the child. Since I have autoimmune issues (Fibromyalgia), it should be tested. This is where his adrenals could be under attack internally and not related to diet or toxins. Most Dr.s typically don't look for it but it can be life threatening if not found. She told me to ask for Dr. Norman Fishman and Don Skor who specialize in endocrinology. She also mentioned the MRI they will be doing on his pituitary is particularly loud and lengthy and sounds like a drill in your head for 30 minutes. Please pray he can handle the noise.

Research on Adrenals

When the adrenals are weak, a person may suffer from low blood sugar, low blood pressure, low body temperature and a feeling of exhaustion. They easily succumb to allergies and infections. Interesting fact: most asthma sprays contain adrenal-like hormones that mimic cortisol in the body. Nutritional deficiencies like B and C along with the accumulation of toxic metals and chemicals in the body can lead to adrenal fatigue. Antibiotics can accumulate in the liver and other organs, and toxins can be generated within the body due to impaired digestion. Additional stressors that tax the adrenals include: physical trauma, excessive exercise, infections, prescriptions, chemical toxins, emotional trauma, poor diet and lack of sleep. Long term over-activation of these hormones can deplete kidneys and adrenals which severely impairs the ability of the immune system to function. The adrenals are fed by nerves that connect to the spine. Those who are susceptible to infections or allergies are often told they have weak kidney energy. Acupuncture can be beneficial for those suffering adrenal exhaustion. Also, a diet high in potassium such as sunflower seeds, wheat germ, almonds, peanuts and pecans can help. For kidney energy eat millet, black beans, kidney beans, barley, wheat germ, potatoes, eggs and blueberries. Vitamins such as pantothenic acid (100 mg per day), C/with bioflavonoids for stress, B6, Zinc, Magnesium, E for oxygen to the cells, extra calcium, magnesium, chromium, iron, and selenium are all beneficial. Flax oil, omega 3's (salmon), Co Enzyme Q-10, Lechithin for nerves, grape seed extract to reduce stress, and wild yam can all help. Rebounding on a trampoline stimulates lymph flow better than any other exercise. Paul suffers from asthma and obviously now food allergies (fructose intolerance) along with exhaustion. He has been on so many antibiotics for strep throat, and has had symptoms of low blood sugar, and low blood pressure. I ordered copies of his medical records and will be picking them up Monday. I think he had six rounds of strep throat pretty close together at the end of school last year and was on the heaviest meds without probotics which could have easily affected all of the trouble in his body. I guess we will find out Tuesday and Wednesday. Hopefully, this info will be helpful to any of you who are also fatigued and suffering.

Confirmation of Hospital Stay

Paul is confirmed for Tuesday and Wednesday of next week. They want to check his cortisol levels before and after meals to see how his body reacts. Dr. Tarr's assistant also told me they will be checking his urine for copper toxicity through their lab. The MRI will be of his brain. I am thankful they can get all of these tests run in two days. It has been such a long journey.

Confirmation of Hospital Admission

The pediatrician just called and said we should stick to the plan of admitting him to the hospital early next week. She also said Dr. Tarr would be in contact with the other Dr. from the Diagnostics Center anyway. I am going to have the test results from urine analysis, saliva analysis and cortisol test from the Chiropractor/Nutritionist/Internal Dr. sent over as well, even though the standards for "normal" may differ. Paul has never had an MRI, so I know that will definately be beneficial. I have had many people tell me they are surprised there was never a colonoscopy or CT Scan of his abdomen since he is experiencing so much pain in that area. The only answer I received is that the colonoscopy is pretty invasive and the CT Scan is really only used as a last resort. I will find out what day he will be getting admitted tomorrow and will post it when I find out.

Possible Hospital Stay

The pediatrician called back to let me know Dr. Tarr wants to admit Paul to the hospital (Childrens) early next week. They already discussed what will be done. She told me they will do an MRI of the head, a 24 hr. urine analysis, and do more extensive blood testing for the cortisol levels (even though she just told me his are fine). This involves his blood being taken 4 different times throughout the day. She said they will also have a therapist on hand for us. I have asked the school office for all of Paul's work for next week, so he will at least have something to do while he is there. She told me not to worry about his white blood cell count because other things in the blood look fine. Then I got a call from the Diagnostics Center telling me they have a cancellation and can get him in March 18th. I called and left a message to the pediatrician to ask her what we should do now. Should we wait and go to the Diagnostics Center or go with the new plan. I will blog more when I find out.

Frustration

The pediatrician called back today to tell me the blood cortisol level is fine. At this point, I am totally confused. Why would it not be fine on a saliva and hair analysis? She recommended admitting him to the hospital too get in a little sooner than April 1st. She said she has already spoken with Dr. Tarr at Childrens, and he is going to quarterback the situation from here. I should hear something today or tomorrow. She said they will do the necessary additional tests they feel are required, but if everything shows up negative that we have to promise her Paul, Jr. will get some therapy. I think she is still thinking it is "in his head" even after a Fructose Intolerance diagnosis and a low white cell blood count (cut in 1/2 in 6 weeks). Does stress cause a drop in the white blood cells? I am thinking he won't be the only one needing therapy!!!! He has strep throat right now for crying out loud. Does he get that from stress? Obviously, he needs therapy. He has been out sick for the last 3 months and not had any of the fun things in his life since December!! He has prayed to go back to school, prayed to play sports again and prayed that they will find his ailments. She said sometimes when kids are sick for a long time, they want to retreat. He doesn't want to retreat. HE LIVES FOR HIS FRIENDS AND PEOPLE! I barely saw him when he was healthy. He was playing with his cousins daily. I honestly didn't think I could get more frustrated, but I was wrong.

What is it going to take?

Staying asleep is not an easy task these days. Up until last week, I was still able to sleep fairly well. I am thinking "what is it going to take"? This child has missed school (except for maybe 4 days) since December. He has been consistently nauseated daily with intermittent headaches. He has stomach pain, he is loosing weight and now his white blood cell counts have dropped in half since January 30th. I looked up 3.2 white blood cell count, and am not even sure he would be strong enough for chemotherapy if his counts go much lower. Today will be a long day waiting on the blood results of the cortisol. However, I am a little confused because I thought in order to test accurately, he would need to do a series of blood work through the day. He only gave blood in the morning. I asked her about a CT scan for his head, but she wants to wait for the results of the cortisol levels first. I have been reflecting back to some of Paul's head injuries and concussions. It has been a few years since his last head injury. I believe he has already had two CT scans for those concussions. Thinking back to his stomach aches and feeling like he was going to vomit this past summer, each stomach ache was accompanied with a headache. To my knowledge, he was never constipated. I have been trying to do as much research as possible on all of these issues. The Fructose Intolerance diagnosis is hard and complicated, but we have cut his sugars out for over a month with no improvement in his well being, especially the nausea. The nauseated feeling doesn't seem like it would be food related, and if it is, then should have at least subsided by now. I would think getting him to the Diagnostics Center would be considered a higher priority.

Proibotics

I asked the Dr. if I should give Paul yogurt with his meds to help keep the good bacteria in his gut. She recommended BD Lactinex and said it is a very good proibotic. Hopefully it will help. He has been unable to talk much of the afternoon due to the soreness. He did get some homework done this afternoon and also went to the grocery store with me to pick out some sugar-free popscicles with aspartame (which is supposed to be okay). Of course, I am not in favor of aspartame but am desperate. So far, he doesn't seem to be any worse on the medicine and its been 4 hours. Paul and I have decided not to give him the DHEA until he is further examined at the Diagnostics Center, however, I am pushing to allow the Licorice Root and Eleuthero. They seem harmless and can only help his immune system deal with all of these issues. The only time Licorice Root would be a concern is if he had high blood pressure and Paul's is low. Everything I have read on it indicates Licorice Root could help many of his symptoms related to his adrenals especially with his fatigue and weakness. Paul is still not sold on these remedies or this Dr. I want to be submissive but also want to cure my son. Any experts on Licorice Root out there? I know the Chinese have been using it medically for hundreds and hundreds of years.

Strep Throat and White Blood Cell Count

Paul woke up very sick today. I took him to the pediatrician's office and his normal Dr. was off today, so we filled in the new doctor with his history. He tested positive for strep throat, which brought up a whole new area of concern - the fructose in the meds. Paul's only option without fructose is to swallow a pill. He is still not able to swallow big pills and especially with a sore throat. We both agreed a cheweable will have to be the way to go, even though it will make him sick for the next 10 days. The bacteria infection needs to be fought first. I asked the Dr. about his white blood cell counts. She explained at normal range is anywhere from 4.5-15. Paul's count is 3.2. She said typically with a bacterial infection that it is supposed to go up, so in this case I am wondering just how low it really is since he started getting the sore throat yesterday right before his blood work. January 30, his count was 6.1. That means it has been cut in half in just 6 weeks. Something is seriously going wrong in his body. Well at least I don't have to worry about that nightmare, since it has already arrived. Tomorrow can't come soon enough to get the other results of the blood work. I feel like I am standing in the middle of a hurricane and watching from the inside out. I see disaster, but we are all still relatively calm. We appreciate your prayers, because God is the only thing sustaining us right now. I feel his peace in the midst of the chaos.

More Test Results

The Dr. just called me with some of Paul's blood work results. While she shared a lot of normal ranges for many things like certain minerals, she also shared he has a low white blood cell count. I don't know the specific numbers or how low; just that they are low. The cortisol information won't be back until Thursday. What I have just looked up online about low white blood cell count is really scary. This could mean he has an infection in his body or the inability to fight off infection in his body, but I certainly can't connect it to his adrenals. Your white blood cells are the ones that are supposed to fight infection, but there are several types and I am clueless on all levels. Apparently, when your white cells are low, you may NOT have the usual signs or symptoms of an infection. I know Paul has needed to urinate a lot more frequently in the last few days and also complained of his gums bleeding. Please pray I can keep it together until Thursday. She doesn't want to do any further testing until until the Cortisol results come back.

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.

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!

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!

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.

Paul's Sickness

If you don't believe in the healing power of our Lord, I will share. God listens and God knows the cries of his people. What a joy it is to have so many praying. Paul, Jr. had the longest stretch of feeling good since I can remember (several hours). Also, he has been sleeping in our room since December, and usually is in a lot of pain and misery which doesn't leave several hours of zzzzs for any of us, and last night was pure bliss. Not even a whimper of a noise. I have tried to reflect on Matthew 7 about worry and the wisdom behind not worrying, but the last several weeks have been a little difficult (and I have been sinning way too much on that subject) but let me reflect and share the hidden treasures while in the valley. First, the one thing I said I would NEVER be able to do is homeschool. God has pulled us through and given us the most precious time together which built our relationship very strong. I have really gotten to know Paul in a special way. Second, he and Lauren have been more loving toward one another. He actually wanted to buy her a Valentine present and initiated the conversation. The day after our ER trip, my cold got pretty severe, and I too was laid up in bed most of the day. He sat at the end of the bed doing his work, and when Lauren came home from school, she helped him study. Even in the midst of his sickness, he came to my bedside and asked if he could get me anything. It was a true act of kindness. Third, as many of you know I have Fibromyalgia which can be very taxing in the winter with cold weather. The good news is the whole month of January went by and I hardly remember it! Thanks for all of your encouragement.

I just received the call from the scheduling desk at Childrens. Paul is now scheduled to get the Hydrogen Breath Test for next Monday. It is a strict no carb, no fiber, no dairy diet 24 hours prior to the test. It will take approx. 4 hours to complete one test and then we have to go back individually for the other two tests with the same format on other days. It was such a joy to find out they only do these tests on Mondays and Thursdays, and the women is off for the 16th, so the next availability is Feb. 23rd and March 2nd. (I am still a little sarcastic). Each test has to be a week apart. The three tests are glucose, lactose intolerance and the third is to find a bacteria. He cannot be on any meds two weeks prior to the tests. I was really hoping to get him some relief with a pain med. or something. It is excrutiating to think we will have possibly another month to find out what is going on. The Dr. doesn't think the extra bowel is causing his stomach issues, and if these tests come back fine, we are going to be at a complete loss. He is exhausted and is really starting to get depressed. He just wants relief from this constant pain and nausea. Please pray.

Paul's sickness

Paul had a really bad night. He was up very late and in tears until 11:20. He woke up a few times in pain and was still bad at 5:00 a.m. The nights are getting worse. I almost called the Dr. on call again but didn't want a repeat of the other night, so I made him work through the pain but it was miserable. I am so sad to see him like this and feel so helpless to trust what I feel is wrong, but we have tried everything. The only thing he hasn't done is a colonoscopy and CT Scan. CT Scans are usually dangerous for kids because they have a risk of causing cancer, so I have been holding off on that one. I will be calling the Dr. today.

Paul's sickness

February 5, 2009

Well, I always said I would NEVER be a blogger, however, with our current situation, this seems to be the easiest way to allow everyone to get updates at their leisure and frees me to focus on Paul, Jr. Anyone reading this blog probably knows our son, Paul, has been very sick and out of school since December. I am now homeschooling. We are on our third Dr. and still waiting for some kind of diagnosis for him. His main symptoms are still stomach pain, nausea, occasional cramps, diarrhea, low grade fevers, fullness after a few bites of food, loss of appetite, severe weakness, dark circles, paleness (yellow and sometimes a weird shade of green). He has lost approx. 3-1/2 pounds so far. It amazes me that the Dr.'s don't seem to think being out of school for a month is a big deal. We are now with Dr. Tarr at Children's, and while he is very busy, we feel we are in the best care now. We ended up in the ER late Tuesday evening due to some other strange symptoms Paul was having. In addition to everything else, he started shivering so bad with the chills, he could hardly hold the thermometer in his mouth. He complained of his legs feeling numb and started having chest cramps and was screaming this was the worst day of all. He couldn't fathom the thought of driving all the way to Children's and was pleading to be taken to St. Lukes. After 2-1/2 hours of waiting for the Dr., the symptoms dissipated and we went home (totally frustrating). He still has daily nausea and stomach pain and is extremely weak. He woke up today and stayed in bed until 1:00 p.m. I must say it is very disheartening to see an 11 year old (who typically can never be tamed) this way. Since December, he has had an Endoscopy, Upper GI, Ultrasound, Blood Work, Stool Samples (three rounds) and an x-ray. The only thing thus far that has been noticed, it an extra amount of bowel (possible obstruction) in the colon. He is also on Prevacid for Reflux. However, he does not really have heartburn or typical symptoms of Reflux and the Prevacid has not done anything for him in the last three weeks. We are still waiting to get a Breath Hydrogen Test which can measure his glucose levels to see if he is glucose intolerant or lactose intolerant. As a baby, he had reflux, colic, and was lactose intolerant. I guess it is possible to grow out of it and back into it. We are just plugging away hoping to get to the root of this problem. He deeply misses his friends and his active life (and as most of you know SO DO I!). Since the only thing he is really able to do is rest on the couch for most of the day, we are hosting a little video game basketball tournament for him next Friday, so he can see some of his buddies. Fortunately, he has been able to keep up on most of his school work. We are very blessed to have so many people praying for us and are grateful for the love and support. Paul loved his jumbo get well card from his classmates. We still need your prayers and will keep you posted when we know more.