Doctors, Doctors and More Doctors

I am not updating as often as I would like, but we have been living in the Dr.'s offices lately. We were referred to another GI specialist who looked over some of Paul's records over the last 18 months. This Dr. was very surprised there weren't other tests run on Paul during his hospital stay last year. After examining Paul, Jr., Dr. Weinstock ordered a SWEAT test to be done at Children's to check for Cystic Fibrosis. He also prescribed Zifaxan to help kill bacteria in the small intestine. The test was done Feb. 15th and we got the results back later in the afternoon that Paul was out of the normal range. Normal is 0-40, and Paul tested a 50. When I got the call from Dr. Weinstock, he said the next step would be blood work. He also prescribed pancreatic enzymes for Paul to start to help him start digesting his food. The pulmonary nurse from Children's contacted me the next day to explain the protocol. She made an appt. for Paul to see the head pulmonary Dr. on March 11th, Dr. Sweet. She also explained to me they would need another SWEAT test, so we did the 2nd one on the 18th. That one also came back abnormal, but lower abnormal at a 43. She explained he is an A typical case and not a classic case. We are waiting for the blood results to come back to see what mutations have been affected. However, they are checking 97 mutations first and then 115. There are a total of 1500 mutations but not enough research to back the less common ones. In the meantime, the pediatrician has been in contact with Dr. Tarr's office at Children's and Dr. Tarr is talking to the CF Dr. who headed up the study on stomach pain in CF patients. He is also talking to Dr. Noon (not sure what he does). Dr. Tarr has all of Paul's paperwork from various Dr.s over the last 18 months and is meeting with other Dr.'s to review them and come up with a plan.

Paul's Update

I thought it might be a good idea to keep track of what is going on again with Paul, Jr. Approx. 5 weeks ago, he started having severe abdominal pain again. I let it go for a couple of weeks and then we ventured to the Dr. to get some answers. The Dr. found the Crypto was back along with some Nematodes and a few viruses (i.e. Mono, West Nile, EBV). He put him on Trileaf and two others to kill the viruses and Crypto. While the symptoms persisted, the meds definately worked. Within one week the Crypto was gone and within 3 the Nematodes were gone and all the viruses cleared up. However, he was still having severe stomach pain. Yesterday, he came in my room and was having real trouble breathing, so I called the pediatrician and got in right away. He was put on a steriod for Croup. Later in the afternoon, we visited Dr. Howell to find out Paul may have leaky-gut syndrome due to inflammation from food allergens. He also suspects an autoimmune reaction to his blood and intestines and found his immune globulins out of balance. He took him off all prior meds he prescribed earlier for the parasites and urged us to avoid all grains and gave Paul a GI comfort formula to restore normal bacteria in his gut. He also gave us a Probiotic. He told me to try Aloe in the gel form which I can find at Whole Foods to help heal the lining as well. He thinks we should follow the Blood Type diet strictly. I have never been so overwhelmed and confused about what to put in his body. Last year it was Fructose Intolerance which turned out not to be the case at all. The next Dr. said to eat plenty of meat but avoid wheat and dairy. The next Dr. said he is highly allergic to yeast but wheat and dairy are ok. The next Dr. said follow the Blood Type Diet strictly which allows some dairy but no red meat. UGGHH. The most frustrating thing of all is that we have tried literally EVERYTHING and nothing seems to help. It has been 18 months with abdominal pain and misery with 2 months at the beginning of school that seemed to be a little better. I wish I could remember what I was doing for those two months with him.

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.