My son Cameron just turned 15 years old in August, but was actually diagnosed with Crohn’s in March when he was 14 years old. Our journey actually started about 3 1/2 years ago. Cameron had taken his 1st ever overnight trip away from us with his Boy Scout troop to the mountains. He was 11 1/2 years old and the ONLY reason we let him go was because the scout master is one of our best friends and neighbor who has literally known Cameron since he was an infant. Well, when he got home that Sunday afternoon, he was THRILLED about the great time he had! He told us all about the fun he had, the food they cooked, the fishing and other activities. However, later that evening after dinner we heard him scream at the top of his lungs. We ran upstairs and he was in the bathroom crying because he was bleeding. My heart sank! My first thought was – did someone do something to my child while he was on the trip!!” It took everything in me not to call the police!! But Cameron reassured me over and over again that no one did anything to him and he didn’t know why he was bleeding. We took him immediately to the hospital. They assured us it was only anal fissures due to hemorrhoids. They said he probably ate too much junk. We thought, okay….I guess that’s possible – but REALLY!! Nonetheless, we were instructed to increase his fiber with fresh fruit and veggies and whole grains along with Miralax. To further ease our concerns, we took him to his pediatrician the next day for them to examine him. They agreed with what the hospital said and told us to follow the routine they suggested.
In my heart, this just didn’t seem right, because I have always been so particular about what my children eat. He was still taking his lunch to school. I was so uncomfortable with the diagnosis, that I asked his pediatrician to run a food allergy test (which they didn’t) and I even tried changing parts of his diet on my own. Nonetheless, about eight months later, he had a bout of diarrhea and bleeding again. We took him back to the pediatrician and they made the same conclusion – hemorrhoids and anal fissures due to constipation. I was so frustrated that I even changed pediatricians. However, his newest pediatrician ordered blood and stool tests and finally suggested we see a specialist.
Shortly after scheduling an appointment with Dr. Cohen, Cameron had one of his worst episodes. After a Saturday morning church meeting, March 5th I found Cameron curled up in the fetal position with a fever of 104!! I took him straight to the hospital. They thought it was appendicitis and said he probably needed an emergency appendectomy. Needless to say, I was in shock! However, further tests indicated his appendix was fine, but showed a significant amount of inflammation in his intestinal area. They gave me pain meds and suggested I see a gastroenterologist. We were already scheduled with Dr. Cohen for Wednesday, March 9th and after examining Cameron, asking us questions and viewing the CD of his Cat-Scan (which I got from Eatside Medical the day before) – he asked us if we had ever heard of Crohn’s or did anyone in our family have Crohn’s. Neither of us had even heard of it, but that’s when he made his initial diagnosis of Cameron. We were dumfounded! No family history, breastfed for the first 18 months, always carefully watching his diet, up to date on all his physicals and immunizations, always a very active athlete…..what!!!! One week later on Wednesday, March 16th, Dr. Cohen performed a colonoscopy and endoscopy. He showed us the results from the camera, and our baby’s intestine was a mess! I was HEARTBROKEN! I felt HORRIBLE!!!! How could I have let my child go all this time and not know!!! Was it my fault!!! Of course, Dr. Cohen assured us it wasn’t our fault, and that he was starting treatment with Prednisone right away. The next week he had an MRI which confirmed Crohn’s and we continued with the Prednisone and Levsin for pain.
As Dr. Cohen tried to reduce his Prednisone dosage, he started having more pain. On Mother’s Day, we rushed Cameron to Scottish Rite Children’s Hospital (who by the way are WONDERFUL!). He was having a terrible flare and remained there for over a week. I slept there every night and one of us was there with him 24 hours a day. He was stabilized and sent home on 6MP. That didn’t seem to work, so he was changed to Methetrexate. Then on June 7th, we had to rush him back to Scottish Rite – again there for over a week and this time with the intent to do reattachment surgery. I begged for one last treatment option, because I felt like if surgery was necessary, we should have a treatment plan in place to reduce or alleviate further disease return. The next to last day at the hospital, they gave him an infusion of Remecaid. He seemed to tolerate it pretty well, and I felt like we were home free. He was sent home with a PICC line and we had to administer intravenous antibiotics for a month at home with the help of a home-visit nurse. That was terrible, because the entire month of June was gone and now part of July. He couldn’t get it wet, he couldn’t really participate in strenuous activity – all I could do was just watch my child try to “hang in there” and do nothing.
Finally, after four infusions of Remecaid (the last one on August 17th causing a very serious cardiac reaction) we were told on August 24th that none of the treatments were working as they should and we were now looking at surgery. I really just felt broken at that time. I begged again for another alternative, and that’s when Dr. Cohen suggested the Specific Carbohydrate Diet. He said it was a very strict regimen and had to be followed closely. He said he had five other patients doing really well on the SCD, although he did warn me that none of them had symptoms as severe as Cameron’s. He wanted Cameron to participate in the test study, but since a camera pill couldn’t pass through Cameron’s constricted intestine, he couldn’t. I just wanted a chance to try.
Since Cameron FIRST got sick, it was in my spirit that if only I could make a radical change to his diet – we could beat this thing. I went for it wholeheartedly – I ordered a yogurt maker, almond flour, the BTVC book and food dehydrator the next day. I called my angels – Paige and Angie and told them my story. When I tell you I believe with all my heart that Cameron WILL be completely healed – I KNOW this, because God sent me guardian angels named Paige and Angie. Paige has been SUCH A BLESSING to me, she told me how to prepare dehydrated food and yogurt – told me where to shop – shared shortcuts and even offered to meet me to help me shop. Angie has been such a sweetie, I can count on her to call and check on me to make sure I’m still hanging in there and she has offered me all types of information and help.
Paige, you are such a blessing to me with this blog, because now even my extended family can get information and feedback regarding Crohn’s and the SCD. Cameron will have another MRI in the next 8 – 10 weeks, and I’m trusting God for an amazing improvement! Although Cameron still has a few yucky symptoms, he seems to be pain-free and for that I say THANK YOU LORD!!! He’s also been a real trooper when it comes to sticking to the diet and I even feel better since I’m doing it with him. I thank God for each of you and all your support and seriously believe together we can beat this thing!!
Peace and Blessings!