S had his GI appt. yesterday.
First off, the result of the small bowel follow through shows narrowing of about 4 inches in the TI. At this point we don't know if this is due to inflammation or scarring. He believes we caught the disease early so he's hopeful that it's inflammation and will go down as he continues the steroid (Entocort). Because Stefan doesn't present with the normal Crohn's symptoms it makes it difficult to tell if he's responding to meds. He will have an MRI in 3 months to determine the status...inflammation or scar tissue.
We will continue to do labs to keep an eye on things. I requested all nutritional labs be done yesterday. Thank you David!
We talked to him about EN and he is all for it! He was surprised that we came to him with it as most parents aren't open to the idea. Thank you Tess and Julie!! We will start this but still allow him to eat if he wants during the day. If the steroid doesn't work then he will go to all liquid and no food. I think this could be a tad easier for him as he cares nothing about food. He never has! We have to remind him to eat, beg him to finish his dinner. It's been a constant battle over the years to get him to eat. It will be such a relief to know he's getting the nutrients he needs!
We've also requested to use LDN. He said, "I'm not saying no but I'm not saying yes. Let me consult with some collegues and get back with you." I should hear back from him no later than next Tuesday on this.
We did have to stop the Flagyl (antibiotic) that he was on after he woke up 2 mornings with numb hands. One of the side effects of the drug is neuropathy! Just another reason I want to limit the amount of drugs we put in his little body!
I'm really wondering if this Entocort is working at all. He's consistenly had blood in his stool the past 2 days. I'll be calling tomorrow about that.
That's where things stand today! I really appreciate all the support and advice from the people here. Thank you!
Shelley
First off, the result of the small bowel follow through shows narrowing of about 4 inches in the TI. At this point we don't know if this is due to inflammation or scarring. He believes we caught the disease early so he's hopeful that it's inflammation and will go down as he continues the steroid (Entocort). Because Stefan doesn't present with the normal Crohn's symptoms it makes it difficult to tell if he's responding to meds. He will have an MRI in 3 months to determine the status...inflammation or scar tissue.
We will continue to do labs to keep an eye on things. I requested all nutritional labs be done yesterday. Thank you David!
We talked to him about EN and he is all for it! He was surprised that we came to him with it as most parents aren't open to the idea. Thank you Tess and Julie!! We will start this but still allow him to eat if he wants during the day. If the steroid doesn't work then he will go to all liquid and no food. I think this could be a tad easier for him as he cares nothing about food. He never has! We have to remind him to eat, beg him to finish his dinner. It's been a constant battle over the years to get him to eat. It will be such a relief to know he's getting the nutrients he needs!
We've also requested to use LDN. He said, "I'm not saying no but I'm not saying yes. Let me consult with some collegues and get back with you." I should hear back from him no later than next Tuesday on this.
We did have to stop the Flagyl (antibiotic) that he was on after he woke up 2 mornings with numb hands. One of the side effects of the drug is neuropathy! Just another reason I want to limit the amount of drugs we put in his little body!
I'm really wondering if this Entocort is working at all. He's consistenly had blood in his stool the past 2 days. I'll be calling tomorrow about that.
That's where things stand today! I really appreciate all the support and advice from the people here. Thank you!
Shelley
Do you have a plan as to when you will be starting the EN?
