Well...
first post.
My 13 year old son was recently diagnosed with Crohns. After reading many post about the difficulties in getting a diagnoses, i guess we were 'lucky' to have been quickly evaluated and recognized for an IBD
Jaz started losing weight ( 15 # in about 4 months ), his appetite went to zero, i thought he was eating like an anorexic, just nibbling at his food, hie color went from tan to white. Everything seem to tick him off. I guess so considering what was brewing inside him.
His GP took one look at him and immediately sent for blood work and called me that night and told me he was referring me to a GI specialist. Within the week we were scheduled for colonoscopy and endoscopy. He was pretty irritated and inflamed from top to bottom. The worst is in his terminal ileum, and duodenum. The MRI showed no stricture or narrowing.
He has been on 40mg Prednisone, we started the taper yesterday, and has started 6MP.
We spoke with the dietician from the hospital yesterday after almost 4 weeks since his diagnosis. Basically she told us he could eat whatever he liked, that food is not a cause or cure for this condition and that the medications prescribed are the industry standard.:rof:
Well, my son was thrilled to hear that he could eat what ever he wanted. I understand that they do not know what causes condition. I find it odd that a dietician did not talk about nutrition, did not once ask about the foods that he is currently eating or what his diet was like before his problems started. When i asked about enteric nutrition, i was told it works very well, as well as steroids during a flare. I was also surprised to hear that Ensure or Boost are the nutritional choice for enteric nutrition. I was not aware that corn syrup and sugar are considered nutritious. I guess I thought that a mixture of nutrients based on the individual needs would be prescribed, particuarly when dealing with a digestive tract that is in dire need of nutrients and healing. As i picked my jaw up off the floor, i realized that this would be a journey. Since we were told of this condition I have been reading and learning, and will continue to do so. I think every case is different as individual people and systems are different.
We are supplementing with Fish oil, a good probiotic, good multi vitamin, iron and enhansa.
The prednisone has, of course, increased his desire to eat the wallpaper off the walls, and increased moodiness at bedtimes. Overall, he has his sense of humor back. He finds it humorous to ask me if i would like to examine his stool, lol. I think probably the hardest for him has been an acceptance at a change in his diet. I thought about how i wanted to handle his diet a great deal. The family has never been big on sodas, they WERE a once a week treat with pizza. I make a lot of meals at home, but i am crowding out things that i usually used, like wheat and dairy.
The other thing i started this week. I am creating a medical folder for my son ( and daughter) I have included his growth charts, vaccine schedule, any blood test results and stool sample test results, as well as the colonoscopy, endoscopy and MRI. I think for a chronic condition, it will prove to be valuable as a base line for them in the future. Anything else that people think would be helpful to include?
I dont pretend to be a doctor, but my husband and i are ultimately responsible for his care, and in helping him understand how to help himself.
Thanks for listening
first post.
My 13 year old son was recently diagnosed with Crohns. After reading many post about the difficulties in getting a diagnoses, i guess we were 'lucky' to have been quickly evaluated and recognized for an IBD
Jaz started losing weight ( 15 # in about 4 months ), his appetite went to zero, i thought he was eating like an anorexic, just nibbling at his food, hie color went from tan to white. Everything seem to tick him off. I guess so considering what was brewing inside him.
His GP took one look at him and immediately sent for blood work and called me that night and told me he was referring me to a GI specialist. Within the week we were scheduled for colonoscopy and endoscopy. He was pretty irritated and inflamed from top to bottom. The worst is in his terminal ileum, and duodenum. The MRI showed no stricture or narrowing.
He has been on 40mg Prednisone, we started the taper yesterday, and has started 6MP.
We spoke with the dietician from the hospital yesterday after almost 4 weeks since his diagnosis. Basically she told us he could eat whatever he liked, that food is not a cause or cure for this condition and that the medications prescribed are the industry standard.:rof:
Well, my son was thrilled to hear that he could eat what ever he wanted. I understand that they do not know what causes condition. I find it odd that a dietician did not talk about nutrition, did not once ask about the foods that he is currently eating or what his diet was like before his problems started. When i asked about enteric nutrition, i was told it works very well, as well as steroids during a flare. I was also surprised to hear that Ensure or Boost are the nutritional choice for enteric nutrition. I was not aware that corn syrup and sugar are considered nutritious. I guess I thought that a mixture of nutrients based on the individual needs would be prescribed, particuarly when dealing with a digestive tract that is in dire need of nutrients and healing. As i picked my jaw up off the floor, i realized that this would be a journey. Since we were told of this condition I have been reading and learning, and will continue to do so. I think every case is different as individual people and systems are different.
We are supplementing with Fish oil, a good probiotic, good multi vitamin, iron and enhansa.
The prednisone has, of course, increased his desire to eat the wallpaper off the walls, and increased moodiness at bedtimes. Overall, he has his sense of humor back. He finds it humorous to ask me if i would like to examine his stool, lol. I think probably the hardest for him has been an acceptance at a change in his diet. I thought about how i wanted to handle his diet a great deal. The family has never been big on sodas, they WERE a once a week treat with pizza. I make a lot of meals at home, but i am crowding out things that i usually used, like wheat and dairy.
The other thing i started this week. I am creating a medical folder for my son ( and daughter) I have included his growth charts, vaccine schedule, any blood test results and stool sample test results, as well as the colonoscopy, endoscopy and MRI. I think for a chronic condition, it will prove to be valuable as a base line for them in the future. Anything else that people think would be helpful to include?
I dont pretend to be a doctor, but my husband and i are ultimately responsible for his care, and in helping him understand how to help himself.
Thanks for listening
