I heard from the Cystic Fibrosis Specialist in Cincinnati today and by the end of the afternoon, we had a plan. He is a very kind and helpful doctor who called with the results at just the right time. Everyone around here is scratching their heads at this little boy who can’t seem to grow or poop, and this doctor may have the solution. I know that sounds promising but it is a catch-22 because with the treatment comes the possible diagnosis of Cystic Fibrosis or a form of Cystic Fibrosis. So yes, we are desperate for relief for our little boy and the treatment sounds hopeful, but no, we don’t want Cystic Fibrosis. We do want answers, and we do want help.
Beckett’s colon tissue was “borderline” Cystic Fibrosis (CF) positive. I was pretty surprised to learn this. They took 4 tiny pieces of colon- one piece was unusable, one piece was positive, two pieces were barely negative. I don’t know specifics, but from what my non-medical brain can gather, CF tissue is under 35 (I have no idea what unit or in regards to what), and normal tissue is above 35. After calculating the numbers of each pieces of tissue, the average of Beckett’s tissue findings was 38. So, he barely made it over to the normal side. His CFTR function is definitely very low, but BARELY not low enough to call it positive for CF or a form of CF. Our little guy is on the border. This brings with it it’s own set of complications. It is not technically low enough for a diagnosis and treatment, however it is not healthy enough to function normally (causing problems such as chronic failure to thrive and severe constipation with abnormal stooling).
So, the CF specialist is recommending further testing including a sweat test and a stool sample (We are experts at that one). If either of these tests are positive for CF, it could help in making a clear diagnosis. He is working on coordinating all of this with our pediatrician so it could take a few days before the testing occurs, and then there is the waiting. I honestly will be absolutely surprised if these are positive. I just don't see how it could be positive.
And here is the hopeful part, the taking action part—a possible solution. After meeting with the Colo-rectal Center doctors, they have decided to go ahead with the treatment based off of his symptoms and colon tissue biopsies alone. We are going to do a trial of pancreatic enzymes for Beckett and see if it helps. These enzymes are used as treatment for people with CF. The enzymes are taken with food to help digest it better and get proper nutrition. From what I hear, the enzymes could and hopefully will help Beckett start gaining weight and having bowel movements with much less intervention (a lower dose of Senna). This could be why he has such a hard time gaining weight even though he does eat enough calories. I know a couple of people who have had success with the enzymes resulting in weight gain and stooling so I feel hopeful. It could take a couple of weeks or longer to see any real improvement. I am so thankful that they have decided to go ahead and start treatment to see if it helps. I am thankful that someone is ready to step out on a limb and try something new to see if it works. I am thankful for action. This doctor actually emailed me a 3 part plan—a plan feels like a blessing. If his body needs the enzymes, he will use them and we should see some progress. And we will know more.
We continue to wait and see. We are in a perpetual state of waiting. We have spent the last 15 months looking for answers, but the waiting game doesn’t really get any easier. I might be used to it by now, but it is still hard. We are just anxious to know what is going on so that we can fight it. I want him to get the help and treatment that he needs.
Please pray for our borderline kiddo. Pray that he could get the exact treatment that he needs to begin thriving, growing, and developing. Please pray for wisdom and persistence from the doctors in trying to figure this sweet boy out. Pray that every person and piece of equipment involved in all of the testing would be accurate. And please pray for peace as we continue to wait once again…and patience, we always needs patience. Thank you so much for checking on Beckett and this topsy turvy road we are on.
Beckett’s colon tissue was “borderline” Cystic Fibrosis (CF) positive. I was pretty surprised to learn this. They took 4 tiny pieces of colon- one piece was unusable, one piece was positive, two pieces were barely negative. I don’t know specifics, but from what my non-medical brain can gather, CF tissue is under 35 (I have no idea what unit or in regards to what), and normal tissue is above 35. After calculating the numbers of each pieces of tissue, the average of Beckett’s tissue findings was 38. So, he barely made it over to the normal side. His CFTR function is definitely very low, but BARELY not low enough to call it positive for CF or a form of CF. Our little guy is on the border. This brings with it it’s own set of complications. It is not technically low enough for a diagnosis and treatment, however it is not healthy enough to function normally (causing problems such as chronic failure to thrive and severe constipation with abnormal stooling).
So, the CF specialist is recommending further testing including a sweat test and a stool sample (We are experts at that one). If either of these tests are positive for CF, it could help in making a clear diagnosis. He is working on coordinating all of this with our pediatrician so it could take a few days before the testing occurs, and then there is the waiting. I honestly will be absolutely surprised if these are positive. I just don't see how it could be positive.
And here is the hopeful part, the taking action part—a possible solution. After meeting with the Colo-rectal Center doctors, they have decided to go ahead with the treatment based off of his symptoms and colon tissue biopsies alone. We are going to do a trial of pancreatic enzymes for Beckett and see if it helps. These enzymes are used as treatment for people with CF. The enzymes are taken with food to help digest it better and get proper nutrition. From what I hear, the enzymes could and hopefully will help Beckett start gaining weight and having bowel movements with much less intervention (a lower dose of Senna). This could be why he has such a hard time gaining weight even though he does eat enough calories. I know a couple of people who have had success with the enzymes resulting in weight gain and stooling so I feel hopeful. It could take a couple of weeks or longer to see any real improvement. I am so thankful that they have decided to go ahead and start treatment to see if it helps. I am thankful that someone is ready to step out on a limb and try something new to see if it works. I am thankful for action. This doctor actually emailed me a 3 part plan—a plan feels like a blessing. If his body needs the enzymes, he will use them and we should see some progress. And we will know more.
We continue to wait and see. We are in a perpetual state of waiting. We have spent the last 15 months looking for answers, but the waiting game doesn’t really get any easier. I might be used to it by now, but it is still hard. We are just anxious to know what is going on so that we can fight it. I want him to get the help and treatment that he needs.
Please pray for our borderline kiddo. Pray that he could get the exact treatment that he needs to begin thriving, growing, and developing. Please pray for wisdom and persistence from the doctors in trying to figure this sweet boy out. Pray that every person and piece of equipment involved in all of the testing would be accurate. And please pray for peace as we continue to wait once again…and patience, we always needs patience. Thank you so much for checking on Beckett and this topsy turvy road we are on.
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