Hello Everyone,
My name is Danielle and my son (Finn, age 6) has just been diagnosed with Crohn's. I don't want to leave anything out, so I guess I'll start at the beginning. I apologize ahead of time for the length of this post!
A few months ago we brought Finn to the pedi after noticing blood and mucus in his stool. They did a stool culture, which came back postive for an intestinal parasite called Cryptosporidium (transmitted through dirty water, among other things - kind of made sense as we like to hike at a spot around a pond). Anyway, Finn was put on Alinia and we thought that was that. I have to say, from the very beginning I thought the Crypto was masking something else. I have no idea why I thought that at the time other than intuition. After a few weeks had gone by, Finn was still showing blood in his stool and we went back to the pedi. This time, the culture did NOT show Crypto and he had developed what we now know is a perianal abcess. So, we were referred to Mass General (I have to pause here to say how lucky we are to live in Boston and have Mass General at our disposal - the doctors and nurses there have been absolutely incredible and I'm so thankful that Finn will continue his treatment there).
Our first visit to Mass General gastroenterology was on May 25th, two days before Finn's 6th birthday. He was put on Omeprazole and Flagyl. After two follow-up visits and an ultrasound, upper and lower endoscopies were scheduled. Finn had the endoscopies done on June 14th. My husband and I were very nervous (okay, it was mostly me) as our little guy had never had anesthesia. Finn wasn't nervous at all!
Our doc told us the upper and lower would take about an hour to an hour and a half, so we settled in for the wait. Then, all of a sudden she was standing next to us in the waiting room, telling us she needed to speak with us. I knew something was wrong. Only 40 minutes had gone by and as you can imagine, I immediately began thinking terrible things as she looked for a private place to talk. I can't believe I didn't faint. As it turned out, they had to stop the colonoscopy almost immediately because our poor guy had so much inflammation and disease that it was dangerous to continue. She told us that they would bump into something and it would just start bleeding. The nurse came out and told us that it hurt to look at. Annnnd, I felt like the worst mother in the world. The doc did say she was shocked and hadn't expected to see that at all. Finn is otherwise a pretty healthy kid and other than the blood and abcess (and occasional - few and far between - stomach ache) he's very normal and active. Anyway, they admitted him to the hospital immediately and he spent three days there on IV meds (steroid, antacid, etc.).
They pretty much suspected Crohn's from the get go as the upper endoscopy had shown some ulcers and such as well. We got the pathology back last Monday, and it was confirmed. Currently Finn is on the Omeprazole, Prednisolone, Flagyl and Pentasa. The first three should be stopping soon and we will continue with the Pentasa, allthough the doc did already say they don't have much hope for the Pentasa and he'll probably switch to Imuran. His little face is all swollen from the steroid, but it doesn't seem to bother him and he'll be off it soon. He's currently on 1500 mg on the Pentasa (750mg, twice a day). Is this a normal pediatric dose? It just seems like SO much!
Backtracking a bit, I guess there's some evidence that pediatric Crohn's is often set off by a viral or bacterial event? This makes sense in Finn's case as the Crypto probably did just that.
I know nothing about all of this other than what I've found on this wonderful forum and the amount of information out there makes my head spin. If any of you have any particular advice or experience you'd like to share I would greatly, greatly appreciate it. Thanks!
My name is Danielle and my son (Finn, age 6) has just been diagnosed with Crohn's. I don't want to leave anything out, so I guess I'll start at the beginning. I apologize ahead of time for the length of this post!
A few months ago we brought Finn to the pedi after noticing blood and mucus in his stool. They did a stool culture, which came back postive for an intestinal parasite called Cryptosporidium (transmitted through dirty water, among other things - kind of made sense as we like to hike at a spot around a pond). Anyway, Finn was put on Alinia and we thought that was that. I have to say, from the very beginning I thought the Crypto was masking something else. I have no idea why I thought that at the time other than intuition. After a few weeks had gone by, Finn was still showing blood in his stool and we went back to the pedi. This time, the culture did NOT show Crypto and he had developed what we now know is a perianal abcess. So, we were referred to Mass General (I have to pause here to say how lucky we are to live in Boston and have Mass General at our disposal - the doctors and nurses there have been absolutely incredible and I'm so thankful that Finn will continue his treatment there).
Our first visit to Mass General gastroenterology was on May 25th, two days before Finn's 6th birthday. He was put on Omeprazole and Flagyl. After two follow-up visits and an ultrasound, upper and lower endoscopies were scheduled. Finn had the endoscopies done on June 14th. My husband and I were very nervous (okay, it was mostly me) as our little guy had never had anesthesia. Finn wasn't nervous at all!
Our doc told us the upper and lower would take about an hour to an hour and a half, so we settled in for the wait. Then, all of a sudden she was standing next to us in the waiting room, telling us she needed to speak with us. I knew something was wrong. Only 40 minutes had gone by and as you can imagine, I immediately began thinking terrible things as she looked for a private place to talk. I can't believe I didn't faint. As it turned out, they had to stop the colonoscopy almost immediately because our poor guy had so much inflammation and disease that it was dangerous to continue. She told us that they would bump into something and it would just start bleeding. The nurse came out and told us that it hurt to look at. Annnnd, I felt like the worst mother in the world. The doc did say she was shocked and hadn't expected to see that at all. Finn is otherwise a pretty healthy kid and other than the blood and abcess (and occasional - few and far between - stomach ache) he's very normal and active. Anyway, they admitted him to the hospital immediately and he spent three days there on IV meds (steroid, antacid, etc.).
They pretty much suspected Crohn's from the get go as the upper endoscopy had shown some ulcers and such as well. We got the pathology back last Monday, and it was confirmed. Currently Finn is on the Omeprazole, Prednisolone, Flagyl and Pentasa. The first three should be stopping soon and we will continue with the Pentasa, allthough the doc did already say they don't have much hope for the Pentasa and he'll probably switch to Imuran. His little face is all swollen from the steroid, but it doesn't seem to bother him and he'll be off it soon. He's currently on 1500 mg on the Pentasa (750mg, twice a day). Is this a normal pediatric dose? It just seems like SO much!
Backtracking a bit, I guess there's some evidence that pediatric Crohn's is often set off by a viral or bacterial event? This makes sense in Finn's case as the Crypto probably did just that.
I know nothing about all of this other than what I've found on this wonderful forum and the amount of information out there makes my head spin. If any of you have any particular advice or experience you'd like to share I would greatly, greatly appreciate it. Thanks!
. This is a great place for support and info and we love to have you stay around. 
