Well, the blood test results are in. Everything was normal. Some of the liver enzymes were high, but, they feel that that is just how his enzymes are. As they arent high enough to indicate disease.
So, now we continue on with the no-dairy/high fiber diet until the end of June. Then, we will go back to Hasbro to go from there. As for the diet, so far. No results. He is pooping about every 3 days, which I guess is an improvement over every 4. But, what comes out is wider than previously. So, its not a miracle cure.
Let the waiting begin.
This originally was a blog detailing Alvin's journey through cranial banding. It's now about his life dealing with Neurofibromatosis, Dyspraxia, and Autism.
Monday, May 18, 2009
Friday, May 1, 2009
Hasbro Children's Hospital
Warning: This post discusses bodily fluids/etc.
Well, we took Alvin to Hasbro Children's Hospital in Providence, RI today. He had an appointment to meet with GI there for a second opinion. (Since Yale has maintained that I am not feeding him and he would gain weight if I just fed him).
There we met his new GI, Dr. Alexander. Dr Alexander is a wonderful man. He sat down and listened to Alvin's entire history before saying anything. He asked alot of questions and gave us the decision on what was more important to us right now: the failure to gain weight or the constipation. Dr Alexander was glad to see that we chose to treat the constipation. He fully believes that the failure to gain weight it due to the length and severity of Alvin's constipation.
So, starting tomorrow, we start on a totally new therapy. We are going to completely flush Alvin's system via enemas. (3 given over 3 days). Then we are going to start him on a dairy-free diet. This is to rule out lactose intolerance as a cause of the constipation. Dr Alexander is also running like 35 different blood tests, including Celiac, and other diseases. The test results for those will be back in around 10-14 days. So, we are to follow the new non-dairy/high fiber diet until we get the blood test results back.
After that, where we go is dependant on the test results. If they find nothing, then we will stay on the new diet for 8 weeks to see if his constipation lessons and he gains weight. They will also do more testing if these blood tests come back normal. Dr Alexander told us today that they WILL find out what is wrong with Alvin. They are very concerned about his chronic constipation. So yay. Finally. Someone who can admit they dont know what is wrong, but are willing to find out.
Well, we took Alvin to Hasbro Children's Hospital in Providence, RI today. He had an appointment to meet with GI there for a second opinion. (Since Yale has maintained that I am not feeding him and he would gain weight if I just fed him).
There we met his new GI, Dr. Alexander. Dr Alexander is a wonderful man. He sat down and listened to Alvin's entire history before saying anything. He asked alot of questions and gave us the decision on what was more important to us right now: the failure to gain weight or the constipation. Dr Alexander was glad to see that we chose to treat the constipation. He fully believes that the failure to gain weight it due to the length and severity of Alvin's constipation.
So, starting tomorrow, we start on a totally new therapy. We are going to completely flush Alvin's system via enemas. (3 given over 3 days). Then we are going to start him on a dairy-free diet. This is to rule out lactose intolerance as a cause of the constipation. Dr Alexander is also running like 35 different blood tests, including Celiac, and other diseases. The test results for those will be back in around 10-14 days. So, we are to follow the new non-dairy/high fiber diet until we get the blood test results back.
After that, where we go is dependant on the test results. If they find nothing, then we will stay on the new diet for 8 weeks to see if his constipation lessons and he gains weight. They will also do more testing if these blood tests come back normal. Dr Alexander told us today that they WILL find out what is wrong with Alvin. They are very concerned about his chronic constipation. So yay. Finally. Someone who can admit they dont know what is wrong, but are willing to find out.
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