Thursday, May 17, 2012
2nd Opinion - CINCINNATI CHILDREN'S HOSPITAL
Bruce had his 4th colonoscopy...yesterday...yes 4th. Three in the last 2 months. He also had an endoscopy. Bruces pain is about an 8. It averages about that everyday. It doesn't change. Some days it will get to a 9. Pushing on stomach will cause a little jump and guarding. We tried different ways of moving to see if the pain would intensify. What we found is more pain when bending over but the pain disappears while on his back, hands above head and stretches...he says Mom, it goes away.
So yesterday we had the endo and colon looked at and they are normal? Um ok...the pain is probably from anxiety and that maybe some meds would help that. What they didn't know was that Bruce has been seen by a psychologist. He is fine...well he's mad and that he hates both diseases and he feels like he's been through ringer. Always cheerful most of the day. He's mad and I can't blame him and who wouldn't have some anxiety...we were prepping him for a colostomy....and he was accepting...I took it upon myself for him to be seen...it was alot. So we do EMDR. This is Eye Movement Desensitization Reprocessing. It's a therapy for people who have PTSD or Post Traumatic Stress Disorder. It's an incredible therapy. With kids it helps to move the clutter that forms in our head from one side of the brain to the other. As adults we can carry a lot of baggage over the years. We sweep things under the rug for years and not let things bother us and then one day you fall apart when the pizza gets burned. Were not crying over the pizza, were crying over whatever we swept under the rug and didn't deal with at that time. Then psychologist tries to peel away the layers to get to the root of the problem and that can take years. When you know what that big factor is in your life this helps...EMDR helps to move the lingering feelings and helps process it...it's an incredible tool. Our doctor says it's like this...your in a scary wood...well you can walk out or you can run like hell. Which do you prefer..for me...run like hell. EMDR helps to speed therapy up. For kids, they don't have the years of baggage like an adult so the therapy works even quicker..don't have peel all those layers back. Bruce is angry. angry that he can't do some of the things he wants to do. He's 10. Most days he will put his illness on the back burner and go. Yes he will pay for it that night or the next morning with his arthritis. The UC is a little bit different. He can't run far..it hurts to run...If it was anxiety it would come and go...his pain has gotten increasingly more painful as his prednisone wears off. By the end of the day and this has been everyday...he is exhausted by the time he goes to sleep. This pain he has in his gut he deals with and pushes it out of his mind, exhausts him and makes him wary by the time he goes to bed. This is what he's mad at....and maybe a bit insulted. He knows the difference between anxiety of oh I just got in trouble and I'm screwed! Those were his words to me. This is pain. He doesn't sleep on his stomach...I know I've checked on him through the night, it hurts. You would have to be consciously aware not to do that. I think clinically if a doctor can't see it on a test they will assume it's psychological. I'm not mad at the dr...just want the dr to go a bit further...well we have done that and our psychologist says he's good and strong, does he have anxiety? Yes? I would. But not to the point of needing medication.
Bruce and I are going on a plane trip to Ohio! Yup, we had to cancel a trip to the keys,(Bruce didn't know) we will go later in the summer. Cincinnati Children's Hospital is one of the best places for gastro. We had the best of luck to get to see this doctor in a very short amount of time. We leave on the 29th of May and come back on the 1st. This doctor wants to do a test called MRI enteroscopy. Trying to figure what this is..but I think he's gonna check out his small intestines. I'm grateful that this man has called to ask if we have done certain testing and even asked if we could ask the doctor who did the scope yesterday to do 2 more tests. The dr complied as he knows we are getting a second opinion. So I'm happy we get to go to Ohio. Bruce is too! Whatever pain he has is real. We know anxiety an pain can go hand in hand...but I think it would be a general pain in his gut. When motions and movement come into play, not to mention distention of his belly, I think were overlooking something. The new dr is wondering if he has crohns disease. So we shall see.
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