Back in November of last year I wrote Our Story, which was our journey up until then. We're now going through a new chapter of our journey, so I thought it was time to start writing it down.
Over the last couple of months we have been trying new things in Asher's diet. He's had 3 reactions in this time and as a family we've found this distressing. Each time Asher had trouble sleeping, he would wake at night needing me to help him pass wind and was extremely irritable. He'd get so upset he would become angry with me and it was difficult to help him calm down (thank goodness for The Wiggles at times like this!). We've eliminated the culprits, learned new things about medications and sugar alcohols (Sorbitol does not agree with Asher's system - a common reaction for people with sensitive guts) and have slowly been trying to figure out the correct amounts of things Asher can handle.
During this time I made an appointment with Asher's GI Paed. I became frustrated as he didn't seem to believe what I was describing was that serious at all and still tries to tell me that Asher should not be reacting to starches - something that a lot of CSID patients react to. After some discussion with the doctor though and between my husband and I, we came to the decision that a biopsy might be the best way to go.
It's looking like in April Asher will have a biopsy performed. I'm currently going through the process of trying to insure the Doctor tests for the things that have been recommended to me by other people dealing with CSID. In all honesty, I feel sick at the thought of my son having to go through this and I am very scared of the whole process. Making the decision to go through with it took me over a week even though my husband said we should straight away. I know we need answers and how useful it would be to have the numbers in front of us to work out what mutation of CSID Asher has, but I wish there was an easier way.
Over the last couple of months we have been trying new things in Asher's diet. He's had 3 reactions in this time and as a family we've found this distressing. Each time Asher had trouble sleeping, he would wake at night needing me to help him pass wind and was extremely irritable. He'd get so upset he would become angry with me and it was difficult to help him calm down (thank goodness for The Wiggles at times like this!). We've eliminated the culprits, learned new things about medications and sugar alcohols (Sorbitol does not agree with Asher's system - a common reaction for people with sensitive guts) and have slowly been trying to figure out the correct amounts of things Asher can handle.
During this time I made an appointment with Asher's GI Paed. I became frustrated as he didn't seem to believe what I was describing was that serious at all and still tries to tell me that Asher should not be reacting to starches - something that a lot of CSID patients react to. After some discussion with the doctor though and between my husband and I, we came to the decision that a biopsy might be the best way to go.
It's looking like in April Asher will have a biopsy performed. I'm currently going through the process of trying to insure the Doctor tests for the things that have been recommended to me by other people dealing with CSID. In all honesty, I feel sick at the thought of my son having to go through this and I am very scared of the whole process. Making the decision to go through with it took me over a week even though my husband said we should straight away. I know we need answers and how useful it would be to have the numbers in front of us to work out what mutation of CSID Asher has, but I wish there was an easier way.
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