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.