- Joined
- Nov 24, 2017
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- 419
Hi everyone. I'm the mom of a little boy (10 yrs old) who just got diagnosed with Crohn's.
I'm not sure when the Crohn's started. Our trouble began the day he came home from the hospital: he wouldn't nurse. He had colic; he was diagnosed with GERD and put on anti-reflux medication. I made a slanted changing station for him because he began screaming in pain if I put him on his back. He was a very picky eater; would only nurse on his right side, lying down, in bed, with the blanket over him, just before falling asleep. At all other times he fought hunger and just wouldn't eat. His birth weight was good, but by 6 months he'd fallen to the bottom 5th%. Then he fell off the chart.
We went to a nutritionist when he was about a year because he wasn't eating enough. She advised us to feed him less often and keep feeding him foods he refused because he'd get over it and start eating them. This wasn't very useful advice.
Soon after he started losing weight despite everything and we started him on formula, (Pediasure,) which probably saved his life. He began guzzling that down. For years he basically ate Pediasure and refused most other foods. Oh, sure, we tried to get him to eat other foods. We tried offering foods more often. We tried offering foods less often. We tried letting him pick meals. We tried all the things. Didn't work. Once we were just like "Oh no, your bottle broke and the store is all out of new ones. Here, we can put your Pediasure in a cup and you can have dinner with us." He refused until he was vomiting from low blood sugar. Obviously we gave him the bottle back.
Finally around 6 he stopped drinking Pediasure and began eating real food, but the pickiness continued. For example, he'd eat ham, but not bread, so I sent him bags of ham in his lunchbox instead of sandwiches. I also sent him containers of peanut butter and crackers. (I don't think the crackers ever got eaten, but I sent them.) Mostly his lunches didn't get eaten. He has a few favorite foods (pizza, hot dogs) but he won't eat or even touch or consider most foods.
And, of course, he didn't grow much. But he seemed like a happy, healthy kid, so I tried not to obsess about it. After all, his dad and I are also small people who never weighed much (were both around the 5th%), so we didn't expect him to be very big, either.
Then last summer things got worse. He had uncontrollable diarrhea at camp. At home, he stopped eating all his usual things. He stopped eating ice cream. Wouldn't drink chocolate milk. Was spending way too long in the bathroom. I didn't really realize how much diarrhea he was having because he locks the door while he's in there and I have other kids keeping me busy, but eventually we noticed "hey he's looking really skinny" and started trying even harder to get him to eat. We tried to get him to eat yogurt (thinking the probiotics would help his diarrhea) and he just looked at us like we were trying to get him to eat worms.
So we got probiotic powder and snuck it into some of the foods he would eat. Finally he started eating a little more. He even had a decent poop. One day of good health! We went to the pumpkin patch and he was running around happily with his siblings in the corn maze, having a great time.
The next day he came home from school with a 100+ fever and a headache. The diarrhea came back. His fevers came and went over the weekend, but on Saturday something new: his butt hurt. At first I thought it was the result of diarrhea, but no, it was on the side of his butt. By Sunday it was clear he was in a great deal of pain. Oddly, despite the fever and pain, he swore up and down that he otherwise felt fine. No runny nose, no sore throat. No general achiness.
Fever + pain with no other symptoms said internal infection to me. Maybe appendicitis? My husband (his dad) took him to urgent care. They took his temperature, said it was normal, said he had a broken tailbone, and sent him home.
The terms of service says not to curse so I won't tell you exactly what I think of the urgent care but suffice to say it involves a lot of poop emojis.
That evening he was very clearly not doing well. First thing in the morning we went to the pediatrician. The pediatrician forwarded us to the ER. We stayed for two weeks. First all the tests, then the diagnosis: Crohn's. The pain was caused by an abscess. They drained the abscess and put him on a feeding tube.
At the hospital they didn't let him eat for three days because of all of the tests (MRI, colonoscopy, etc). He had an IV, but this was a very skinny kid ("malnourished" was the doctor's word) and I really don't know what is best medical practice or if an IV is sufficient but I was very troubled by this. I thought he should be eating. He was so weak and hungry.
We've been home for a bit over a week. He's gained >5 lbs since he was admitted. He's on antibiotics, remicade, and 1500 calories a night by tube. We're still waiting to see what works. Waiting and researching.
Most of the doctors and nurses at the hospital were great. We had one doctor I didn't like, though, the first night. At that point I didn't know what was going on and wasn't sure which information was important. Did his butt hurt because he had fallen on the stairs on the way to the pumpkin patch? Was his tailbone broken? What about the sore throat he'd had a couple of weeks ago? She didn't like my uncertainty. "Well I thought we were here for the diarrhea, but it looks like we're actually here for the pain in his bottom." Me: "Well we're here for both. They could be connected." Her: "Well I wouldn't know about that."
I was flabbergasted. Even I knew these things could be linked. And even if they weren't, they were both important.
Like I said, everyone else at the hospital was great. But if you get a doctor who thinks part of your story isn't important, don't get discouraged. You're the one living it. You know your symptoms. Don't let someone tell you that only part of what you're suffering matters.
Now if that weren't enough... My 5 yr old has been throwing up. Not a lot, just spit-ups. But they've gotten more frequent this month. Last week she got sent home from school twice last week because she threw up. I don't think she dislikes school or is doing it on purpose. She also threw up at home right after dinner. She's thrown up after grapes, chocolate milk, ice cream sandwiches, and Halloween candy. (She was with grandma at the time and grandma swears up and down that she did not let her have that much candy.)
Hopefully it's something innocuous like "she's allergic to chocolate" or "she was stressed out because her brother was in the hospital." She's got an appointment with the gastro next week and hopefully we'll find out.
So far we've been researching other Crohn's treatments. I don't really know much about anything yet, but I've seen good looking studies on hyperbaric treatments for healing fistulas, anti-MAP therapy (the idea that Johne's disease in cattle and Crohn's in people can be caused by the same bacteria seems very sensible,) and fecal transplants (it sounds silly, but given the lengths people have to go to with this disease, why not?) I hear there's a vaccine trial and am eagerly awaiting news on that. Has anyone interacted with the company in NZ that tests for MAP infection? Are they good?
Oh. I should note that since the hospitalization, he has been more willing to try new foods. Now this is "willing" by his standards, mind, not normal people standards. He did have a few pieces of chicken from a bowl of soup (he is absolutely opposed to the concept of "food served with water") and even sampled yogurt, though I made the mistake of letting him pick his own yogurt and I swear he picked the worst one in the store just because it came with M&Ms. He also tried a peanut butter and jelly SANDWICH on BREAD for the first time in his life and decided he likes it!
His gastro noted that she's seen several kids with similar histories of being extremely picky eaters from birth and then developing Crohn's, which is why I included the origin story. She also noted that this seems especially common in autistic children, who often have severe food issues. Well, I don't consider him autistic, but his teachers do. (I have autistic family members and by comparison with them, he's normal. But in comparison to other kids? I have no idea.) So maybe there's a connection.
We've talked to two more dieticians (they are mostly concerned with just getting calories into him, not any specific diets) and with any luck will get a recommendation for someone with experience getting really picky eaters to eat things, because I am obviously not very good at that.
So that's where we are now. I hope this story helps someone else going through the same things we are. Good luck, everyone.
I'm not sure when the Crohn's started. Our trouble began the day he came home from the hospital: he wouldn't nurse. He had colic; he was diagnosed with GERD and put on anti-reflux medication. I made a slanted changing station for him because he began screaming in pain if I put him on his back. He was a very picky eater; would only nurse on his right side, lying down, in bed, with the blanket over him, just before falling asleep. At all other times he fought hunger and just wouldn't eat. His birth weight was good, but by 6 months he'd fallen to the bottom 5th%. Then he fell off the chart.
We went to a nutritionist when he was about a year because he wasn't eating enough. She advised us to feed him less often and keep feeding him foods he refused because he'd get over it and start eating them. This wasn't very useful advice.
Soon after he started losing weight despite everything and we started him on formula, (Pediasure,) which probably saved his life. He began guzzling that down. For years he basically ate Pediasure and refused most other foods. Oh, sure, we tried to get him to eat other foods. We tried offering foods more often. We tried offering foods less often. We tried letting him pick meals. We tried all the things. Didn't work. Once we were just like "Oh no, your bottle broke and the store is all out of new ones. Here, we can put your Pediasure in a cup and you can have dinner with us." He refused until he was vomiting from low blood sugar. Obviously we gave him the bottle back.
Finally around 6 he stopped drinking Pediasure and began eating real food, but the pickiness continued. For example, he'd eat ham, but not bread, so I sent him bags of ham in his lunchbox instead of sandwiches. I also sent him containers of peanut butter and crackers. (I don't think the crackers ever got eaten, but I sent them.) Mostly his lunches didn't get eaten. He has a few favorite foods (pizza, hot dogs) but he won't eat or even touch or consider most foods.
And, of course, he didn't grow much. But he seemed like a happy, healthy kid, so I tried not to obsess about it. After all, his dad and I are also small people who never weighed much (were both around the 5th%), so we didn't expect him to be very big, either.
Then last summer things got worse. He had uncontrollable diarrhea at camp. At home, he stopped eating all his usual things. He stopped eating ice cream. Wouldn't drink chocolate milk. Was spending way too long in the bathroom. I didn't really realize how much diarrhea he was having because he locks the door while he's in there and I have other kids keeping me busy, but eventually we noticed "hey he's looking really skinny" and started trying even harder to get him to eat. We tried to get him to eat yogurt (thinking the probiotics would help his diarrhea) and he just looked at us like we were trying to get him to eat worms.
So we got probiotic powder and snuck it into some of the foods he would eat. Finally he started eating a little more. He even had a decent poop. One day of good health! We went to the pumpkin patch and he was running around happily with his siblings in the corn maze, having a great time.
The next day he came home from school with a 100+ fever and a headache. The diarrhea came back. His fevers came and went over the weekend, but on Saturday something new: his butt hurt. At first I thought it was the result of diarrhea, but no, it was on the side of his butt. By Sunday it was clear he was in a great deal of pain. Oddly, despite the fever and pain, he swore up and down that he otherwise felt fine. No runny nose, no sore throat. No general achiness.
Fever + pain with no other symptoms said internal infection to me. Maybe appendicitis? My husband (his dad) took him to urgent care. They took his temperature, said it was normal, said he had a broken tailbone, and sent him home.
The terms of service says not to curse so I won't tell you exactly what I think of the urgent care but suffice to say it involves a lot of poop emojis.
That evening he was very clearly not doing well. First thing in the morning we went to the pediatrician. The pediatrician forwarded us to the ER. We stayed for two weeks. First all the tests, then the diagnosis: Crohn's. The pain was caused by an abscess. They drained the abscess and put him on a feeding tube.
At the hospital they didn't let him eat for three days because of all of the tests (MRI, colonoscopy, etc). He had an IV, but this was a very skinny kid ("malnourished" was the doctor's word) and I really don't know what is best medical practice or if an IV is sufficient but I was very troubled by this. I thought he should be eating. He was so weak and hungry.
We've been home for a bit over a week. He's gained >5 lbs since he was admitted. He's on antibiotics, remicade, and 1500 calories a night by tube. We're still waiting to see what works. Waiting and researching.
Most of the doctors and nurses at the hospital were great. We had one doctor I didn't like, though, the first night. At that point I didn't know what was going on and wasn't sure which information was important. Did his butt hurt because he had fallen on the stairs on the way to the pumpkin patch? Was his tailbone broken? What about the sore throat he'd had a couple of weeks ago? She didn't like my uncertainty. "Well I thought we were here for the diarrhea, but it looks like we're actually here for the pain in his bottom." Me: "Well we're here for both. They could be connected." Her: "Well I wouldn't know about that."
I was flabbergasted. Even I knew these things could be linked. And even if they weren't, they were both important.
Like I said, everyone else at the hospital was great. But if you get a doctor who thinks part of your story isn't important, don't get discouraged. You're the one living it. You know your symptoms. Don't let someone tell you that only part of what you're suffering matters.
Now if that weren't enough... My 5 yr old has been throwing up. Not a lot, just spit-ups. But they've gotten more frequent this month. Last week she got sent home from school twice last week because she threw up. I don't think she dislikes school or is doing it on purpose. She also threw up at home right after dinner. She's thrown up after grapes, chocolate milk, ice cream sandwiches, and Halloween candy. (She was with grandma at the time and grandma swears up and down that she did not let her have that much candy.)
Hopefully it's something innocuous like "she's allergic to chocolate" or "she was stressed out because her brother was in the hospital." She's got an appointment with the gastro next week and hopefully we'll find out.
So far we've been researching other Crohn's treatments. I don't really know much about anything yet, but I've seen good looking studies on hyperbaric treatments for healing fistulas, anti-MAP therapy (the idea that Johne's disease in cattle and Crohn's in people can be caused by the same bacteria seems very sensible,) and fecal transplants (it sounds silly, but given the lengths people have to go to with this disease, why not?) I hear there's a vaccine trial and am eagerly awaiting news on that. Has anyone interacted with the company in NZ that tests for MAP infection? Are they good?
Oh. I should note that since the hospitalization, he has been more willing to try new foods. Now this is "willing" by his standards, mind, not normal people standards. He did have a few pieces of chicken from a bowl of soup (he is absolutely opposed to the concept of "food served with water") and even sampled yogurt, though I made the mistake of letting him pick his own yogurt and I swear he picked the worst one in the store just because it came with M&Ms. He also tried a peanut butter and jelly SANDWICH on BREAD for the first time in his life and decided he likes it!
His gastro noted that she's seen several kids with similar histories of being extremely picky eaters from birth and then developing Crohn's, which is why I included the origin story. She also noted that this seems especially common in autistic children, who often have severe food issues. Well, I don't consider him autistic, but his teachers do. (I have autistic family members and by comparison with them, he's normal. But in comparison to other kids? I have no idea.) So maybe there's a connection.
We've talked to two more dieticians (they are mostly concerned with just getting calories into him, not any specific diets) and with any luck will get a recommendation for someone with experience getting really picky eaters to eat things, because I am obviously not very good at that.
So that's where we are now. I hope this story helps someone else going through the same things we are. Good luck, everyone.
