Doctors, Doctors, Doctors.
GI
I don't know how I managed to schedule so many doctor appointments in the weeks leading up to Christmas! This week we had follow up with GI. Ryan is still having some significant breakthroughs with his reflux despite the increase in Prevacid dose which helped for a while and then leveled off once again. Due to his sensitivity to cows milk and the ongoing reflux his Dr wants to scope for eosinophilic esophagitis. Eosinophilic (ee-oh-sin-oh-fill-ick) esophagitis (EE or EoE) is an allergic inflammatory disorder affecting children and adults, EE is an abnormal immunological reaction to food, characterized by elevated eosinophils—a type of white blood cell—in the esophagus. When the body’s immune system attacks a substance, in this case an allergy-triggering food, eosinophils move into the area and release chemicals that can damage the tissue. When the body produces too many eosinophils, it can cause chronic inflammation and scarring of the esophagus. Ryan will be put under general anaesthesia and a scope will be inserted to view his esophagus and biopsy's will be taken for testing
ORTHOTIST
The same day we also met with Dr Jordan for orthotics. As mentioned before Ryan is having problems with his new orthotics and although i loathed the thought of driving 100 miles one way to Dr J and paying out of pocket for the pleasure of the appointment I felt it had to be done. Dr J agreed that the braces are not the best for Ryan, they are too tubular therefore giving no custom support to his calf's etc and the hinge was not helping his crouching when standing. He feels the hamstring tightness is getting tighter and agreed with the physiatrist that serial casting might be in Ryan's future but wanted to try a month in new braces to see if he can help his legs less invasivley. He did feel that left on its own the muscles will continue to get tighter due to how Ryan is using them to compensate for his weaknesses in other areas. So more moulds were taken of Ryan's legs and his new braces should be ready in January. Doesn't usually take that long but I'm waiting until the new year until my flex spending plan at work renews.
NEUROLOGY
2 days later we met with Ryan's neurologist. He had wanted to see us for a follow up and to discuss the MRI and spinal tap requested by Johns Hopkins. Not much new to tell only that he feels Ryan is still a "mirror baby" as he calls it, not too sure what that means but something to do with his alertness and use of his eyes to take in whats going on rather than use his muscles to explore. He feels this is important to get a true reading on the brain activity rather than going completely by black and white progress / test results. I guess another way of saying he feels Ryan has more going on than he can actually show us. (Or maybe he just likes us and wants to make me feel better).He wants to wait until the micro array is back from Johns Hopkins before proceeding with the MRI etc because based on those results he may want to add some tests to the spinal tap. I asked again about mito and once again he said its still on the table, but I personally don't feel a muscle biopsy is necessary at this point.
I don't know how I managed to schedule so many doctor appointments in the weeks leading up to Christmas! This week we had follow up with GI. Ryan is still having some significant breakthroughs with his reflux despite the increase in Prevacid dose which helped for a while and then leveled off once again. Due to his sensitivity to cows milk and the ongoing reflux his Dr wants to scope for eosinophilic esophagitis. Eosinophilic (ee-oh-sin-oh-fill-ick) esophagitis (EE or EoE) is an allergic inflammatory disorder affecting children and adults, EE is an abnormal immunological reaction to food, characterized by elevated eosinophils—a type of white blood cell—in the esophagus. When the body’s immune system attacks a substance, in this case an allergy-triggering food, eosinophils move into the area and release chemicals that can damage the tissue. When the body produces too many eosinophils, it can cause chronic inflammation and scarring of the esophagus. Ryan will be put under general anaesthesia and a scope will be inserted to view his esophagus and biopsy's will be taken for testing
ORTHOTIST
The same day we also met with Dr Jordan for orthotics. As mentioned before Ryan is having problems with his new orthotics and although i loathed the thought of driving 100 miles one way to Dr J and paying out of pocket for the pleasure of the appointment I felt it had to be done. Dr J agreed that the braces are not the best for Ryan, they are too tubular therefore giving no custom support to his calf's etc and the hinge was not helping his crouching when standing. He feels the hamstring tightness is getting tighter and agreed with the physiatrist that serial casting might be in Ryan's future but wanted to try a month in new braces to see if he can help his legs less invasivley. He did feel that left on its own the muscles will continue to get tighter due to how Ryan is using them to compensate for his weaknesses in other areas. So more moulds were taken of Ryan's legs and his new braces should be ready in January. Doesn't usually take that long but I'm waiting until the new year until my flex spending plan at work renews.
NEUROLOGY
2 days later we met with Ryan's neurologist. He had wanted to see us for a follow up and to discuss the MRI and spinal tap requested by Johns Hopkins. Not much new to tell only that he feels Ryan is still a "mirror baby" as he calls it, not too sure what that means but something to do with his alertness and use of his eyes to take in whats going on rather than use his muscles to explore. He feels this is important to get a true reading on the brain activity rather than going completely by black and white progress / test results. I guess another way of saying he feels Ryan has more going on than he can actually show us. (Or maybe he just likes us and wants to make me feel better).He wants to wait until the micro array is back from Johns Hopkins before proceeding with the MRI etc because based on those results he may want to add some tests to the spinal tap. I asked again about mito and once again he said its still on the table, but I personally don't feel a muscle biopsy is necessary at this point.
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