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.