- Joined
- Apr 4, 2014
- Messages
- 39
Hi all.... My husband and I have finally worked up the courage to join this forum and start posting. Our beautiful little girl, Madeleine was diagnosed with Crohn's in December, 2013, at the age of 3 1/2. Here's our story so far (I warn you .... it's long!)
Maddie was always a healthy child. We didn't have any issues until about 2 months after her 3rd birthday. In July of last year, she started having what turned out to be 6 months of unexplained diarrhea. For the first two or three months she remained her happy-go-lucky self. There were no sleep issues, or complaints of pain. In September, we started with the night poops, and she started having a lot of pain while having a bowel movement. The frequency started going up. We had visited our family dr in August/September. He chose to run a standard blood panel and discovered that her hemoglobin levels were very low. He also discovered that she might be gluten intolerant or celiac. At that point we decided to push for a referral to the pediatric gastro for a scope to test for celiac. That referral was going to take a few months. In the meantime we went gluten and dairy free as well as starting iron supplements. Fast forward a couple months and nothing was getting better. We had a couple more visits with our family dr and a useless pediatrician and we were no further ahead with no relief in her symptoms.
At this point she was starting to get random frequent fevers that resolved themself quite quickly. We had googled all manner of gastro-related conditions and ruled most of them out thinking she didn't fit any one particular condition (HA!). We were waiting for an appointment with the gastro. We were still chugging along. Maddie had gone through a growth spurt (gaining 4 pounds and 2 inches in 3 months). In that time she had also developed a massive skin tag on her rectum that our fam dr. brushed off. We didn't know what to think.
Fast foward to November. She had a bout of vomiting at daycare and for about a week after that she just wasn't herself. Just tired, lethargic, grumpy, on and off fevers. On the last night before all hell broke loose, we discovered canker-sore like sores in her mouth and sores on her hands and feet. We thought it was hand foot and mouth disease. Back to the family dr we went. He confirmed HMFD. This was a wednesday. We spent the rest of that week waiting for symptoms to abate with no change. I kept telling my husband that my gut feeling was something was wrong. I finally convinced him to take her to the ER the next day. She was seen by the on call pediatrician who thought it was HMFD too, but once DH started telling her about everything that was going on, her opinion changed. She decided to run ESR and albumin tests and let DH know that if they came back positive, then her thought was that we might be dealing with Crohn's and that the up and down fevers, lethargy, pain etc. showed that she was in a flare and that she was likely developing a secondary intestinal infection. The blood tests came back positive.
We were allowed to bring her home, and were booked in for an abdominal ultrasound for later that week. We took her to the ultrasound and then to the lab to submit a FIT test. Her fever still hadn't abated, and while we were at the lab we got a call from the pediatrician indicating that we had waited long enough and it was time to get her in to the hospital for IV antibiotics (flagyl and cipro).
We spent a week in the hospital and we were finally able to touch base with the pediatric gastro. He felt that the initial diagnosis was likely correct and that we needed to decide if we wanted to proceed with prednisone or go to full bowel rest with an NG. After weighing the pros and cons, we chose to do the NG tube. She was put on Peptamen 1.5 for the duration of our stay, with the hopes of her transitioning to Ensure Plus when we were discharged. Her colonoscopy/gastroscopy was scheduled at a hospital 3 hours away for December 12th - about a week after we were discharged. We drove her up the day before her scope to begin bowel prep. That night she spiked another fever. She was still on tube feeds and had just ended her course of antibiotics so we had no clue what was going on. The scope happened the next day and we were able to confirm her diagnosis. We should have been able to go home right away but because of the fever, they made us stay one more night. We were allowed to come home the next day, but she had to go straight to the hospital for more antibiotics due to this fever not going away (it later turned out to be influenza, so the second week in the hospital on IV antibiotics wasn't necessary).
We spent a quiet Christmas at home with her and our 5 year old son, trying to relax, learning about our new normal, and getting Maddie well again. We started the long process of getting her on a 2.5 mg/kg dose of Imuran. Her first dose was on NYE. The tube came out mid January and we were able to transition her to a low residue diet. We thought everything was going well, but two weeks after the tube came out, she relapsed again. The tube went back in for 6 weeks, in which time we upped her from 1 mg/kg to 2 mg/kg of Imuran. Everything seems to be going well. The tube came out a month ago. We're in the process right now of weaning her off of a low residue diet and back on to a normal diet. We upped her dose of Imuran to the final 2.5 mg/kg a week ago. So far it appears to be working. We have our vibrant, spunky little girl back for the first time in nearly 6 months. Her last round of blood work was PERFECT. Her doctors are so happy with her progress. What a relief.
We now know what to expect, and how to handle a flare. We know what treatments seem to work for her and how to administer them. We know not to panic. It has been an awful few months, but we've come to realize that we're a very strong, very tight family that is willing to fight for one another. My husband and I have learned just how special and rare our relationship is. This has only brought us closer together and we're very lucky for that. I know we'll likely have a long road ahead of us, and we'll stumble a lot along the way. This is NOT the way I pictured our lives turning out, and there have been plenty of tears shed and lots of time mourning the life we have lost, but I know in the end we'll be ok.
I put a Disney DVD on for Maddie when we were in the hospital. I can't even remember what it was but there was a preview for the movie Brave on it. Near the end of the trailer this quote flashed up on the screen - "In every age, family is king. And the bravest journeys are never taken alone". Gah I totally lost it. I've since found out there are about 4 different trailers for this movie, and only one of them had this tagline in it - I think it was just serendipity that I happened to see it. The bravest journeys are never taken alone. So so so true. It has since become our family motto. DH and I had it tattooed on our arms in March. It will always be a reminder of how we'll always be there for each other and for DD, and it's a reminder to me that no matter how alone I feel in all of this, I'm NOT.
THANK YOU if you've read all of this. This forum terrified me when I first came across it. I'm just feeling strong enough now to start frequenting it and I look forward to getting to know all of you. It appears we're in a very elite club, and it will be nice to have access to people who are in the same boat as us.
Maddie was always a healthy child. We didn't have any issues until about 2 months after her 3rd birthday. In July of last year, she started having what turned out to be 6 months of unexplained diarrhea. For the first two or three months she remained her happy-go-lucky self. There were no sleep issues, or complaints of pain. In September, we started with the night poops, and she started having a lot of pain while having a bowel movement. The frequency started going up. We had visited our family dr in August/September. He chose to run a standard blood panel and discovered that her hemoglobin levels were very low. He also discovered that she might be gluten intolerant or celiac. At that point we decided to push for a referral to the pediatric gastro for a scope to test for celiac. That referral was going to take a few months. In the meantime we went gluten and dairy free as well as starting iron supplements. Fast forward a couple months and nothing was getting better. We had a couple more visits with our family dr and a useless pediatrician and we were no further ahead with no relief in her symptoms.
At this point she was starting to get random frequent fevers that resolved themself quite quickly. We had googled all manner of gastro-related conditions and ruled most of them out thinking she didn't fit any one particular condition (HA!). We were waiting for an appointment with the gastro. We were still chugging along. Maddie had gone through a growth spurt (gaining 4 pounds and 2 inches in 3 months). In that time she had also developed a massive skin tag on her rectum that our fam dr. brushed off. We didn't know what to think.
Fast foward to November. She had a bout of vomiting at daycare and for about a week after that she just wasn't herself. Just tired, lethargic, grumpy, on and off fevers. On the last night before all hell broke loose, we discovered canker-sore like sores in her mouth and sores on her hands and feet. We thought it was hand foot and mouth disease. Back to the family dr we went. He confirmed HMFD. This was a wednesday. We spent the rest of that week waiting for symptoms to abate with no change. I kept telling my husband that my gut feeling was something was wrong. I finally convinced him to take her to the ER the next day. She was seen by the on call pediatrician who thought it was HMFD too, but once DH started telling her about everything that was going on, her opinion changed. She decided to run ESR and albumin tests and let DH know that if they came back positive, then her thought was that we might be dealing with Crohn's and that the up and down fevers, lethargy, pain etc. showed that she was in a flare and that she was likely developing a secondary intestinal infection. The blood tests came back positive.
We were allowed to bring her home, and were booked in for an abdominal ultrasound for later that week. We took her to the ultrasound and then to the lab to submit a FIT test. Her fever still hadn't abated, and while we were at the lab we got a call from the pediatrician indicating that we had waited long enough and it was time to get her in to the hospital for IV antibiotics (flagyl and cipro).
We spent a week in the hospital and we were finally able to touch base with the pediatric gastro. He felt that the initial diagnosis was likely correct and that we needed to decide if we wanted to proceed with prednisone or go to full bowel rest with an NG. After weighing the pros and cons, we chose to do the NG tube. She was put on Peptamen 1.5 for the duration of our stay, with the hopes of her transitioning to Ensure Plus when we were discharged. Her colonoscopy/gastroscopy was scheduled at a hospital 3 hours away for December 12th - about a week after we were discharged. We drove her up the day before her scope to begin bowel prep. That night she spiked another fever. She was still on tube feeds and had just ended her course of antibiotics so we had no clue what was going on. The scope happened the next day and we were able to confirm her diagnosis. We should have been able to go home right away but because of the fever, they made us stay one more night. We were allowed to come home the next day, but she had to go straight to the hospital for more antibiotics due to this fever not going away (it later turned out to be influenza, so the second week in the hospital on IV antibiotics wasn't necessary).
We spent a quiet Christmas at home with her and our 5 year old son, trying to relax, learning about our new normal, and getting Maddie well again. We started the long process of getting her on a 2.5 mg/kg dose of Imuran. Her first dose was on NYE. The tube came out mid January and we were able to transition her to a low residue diet. We thought everything was going well, but two weeks after the tube came out, she relapsed again. The tube went back in for 6 weeks, in which time we upped her from 1 mg/kg to 2 mg/kg of Imuran. Everything seems to be going well. The tube came out a month ago. We're in the process right now of weaning her off of a low residue diet and back on to a normal diet. We upped her dose of Imuran to the final 2.5 mg/kg a week ago. So far it appears to be working. We have our vibrant, spunky little girl back for the first time in nearly 6 months. Her last round of blood work was PERFECT. Her doctors are so happy with her progress. What a relief.
We now know what to expect, and how to handle a flare. We know what treatments seem to work for her and how to administer them. We know not to panic. It has been an awful few months, but we've come to realize that we're a very strong, very tight family that is willing to fight for one another. My husband and I have learned just how special and rare our relationship is. This has only brought us closer together and we're very lucky for that. I know we'll likely have a long road ahead of us, and we'll stumble a lot along the way. This is NOT the way I pictured our lives turning out, and there have been plenty of tears shed and lots of time mourning the life we have lost, but I know in the end we'll be ok.
I put a Disney DVD on for Maddie when we were in the hospital. I can't even remember what it was but there was a preview for the movie Brave on it. Near the end of the trailer this quote flashed up on the screen - "In every age, family is king. And the bravest journeys are never taken alone". Gah I totally lost it. I've since found out there are about 4 different trailers for this movie, and only one of them had this tagline in it - I think it was just serendipity that I happened to see it. The bravest journeys are never taken alone. So so so true. It has since become our family motto. DH and I had it tattooed on our arms in March. It will always be a reminder of how we'll always be there for each other and for DD, and it's a reminder to me that no matter how alone I feel in all of this, I'm NOT.
THANK YOU if you've read all of this. This forum terrified me when I first came across it. I'm just feeling strong enough now to start frequenting it and I look forward to getting to know all of you. It appears we're in a very elite club, and it will be nice to have access to people who are in the same boat as us.
Especially at the beginning or at any time when you're dealing with the unknown, it's wonderful to have people who understand and can share their experiences! 
