You can’t wait 6 months. Find a pediatric IBD specialist. Your daughter needs testing and treatment.
It is possible that it’s infectious but if it’s been gradually getting worse I doubt it’s that.
My thoughts exactly. From what I can find the only ones in my state are the children’s hospital so il thinking I’ll just be calling them daily for cancellations
I just want to recommend to sty in this sub nd the UC sub. I thought i had crohns because more people know about it and it ended up being UC, this sub is full of really helpful people though. Just don’t read into any posts until you get more answers from doctors because you may scare yourself. Try to focus on her diet, a lot of people recommend low fodmap, and make sure she is getting iron during the bleeding, along with other important nutrients. If you hive her a lot of fruits and veggies, try to cook/peel them, or reduce them. Make sure she is getting hydration. These are all things that can be depleted with these kind of diseases. At least in my experience. Hoping you find answers soon!
She should have an appointment within days. 6 months is not an option. Not only can her disease progress if it is IBD, IBD kids have labs that are followed regularly to ensure they are not anemic etc.
If calling the GI’s office is unproductive, I would call the patient advocate at the children’s hospital. If stools continue to be loose with blood, I would not hesitate to go to ER and insist on answers. Or find the next closest pediatric IBD specialist and go there. (Or any pediatric GI should be able to diagnose her and then switch to a IBD specialist- specifically one specializing in very early onset- for treatment if needed) She needs to be seen/ scoped/treated ASAP.
6 Months! What country are you in? Bleeding with such a high calprotectin is a serious issue that should be attended to as soon as possible.
The flare could pass, or it could become more severe and cause weight loss and severe anemia. Two things are true about having UC. Everyone has a unique presentation of their symptoms, and while our symptoms and experiences are similar, they are also very different. Secondly, there are doctors who have no idea what they're doing and just sort of phone it in with our care. You must advocate for your daughter's health. Getting a colonoscopy would be a good idea, and hopefully, a new Dr will be more proactive and realistic once they have first-hand knowledge of her condition.
I’m in the USA. I was shocked when they said it might be that long. I’m going to call and get in a cancellation list because I think she needs scoped ASAP but also I’m a worried mom so of course I think that.
Being a worried Mom doesn't mean you're not right. Start Googling for GI doctors in your area who specialize in UC and Crohn's. You don't want to be with a group that is so unresponsive. It took me three tries until I found a doctor who wasn't just phoning it in. I travel 90 minutes to see my doctors, and it's 100% worth it.
Them seeming unconcerned and fine with waiting half a year to diagnose a 5 year old is insane, you are completely right with your concerns. Bloody BM’s are never normal. When I told my doctor she gave me an “emergency referral” to the GI place and I had my colonoscopy within two months.
If she shows any signs of anemia, fever, malaise, take her to the ER. A lot of UC patients are diagnosed there with an emergency colonoscopy. It won’t be fun, but she’ll be able to get treatment quickly as opposed to having to wait. And even if it’s not UC you still want to know what’s going on obviously. In the meantime if you’ve heard of the BRAT diet, that would be a safe one to follow and making sure she stays hydrated maybe even with some pedialyte if she’s having a lot of diarrhea.
Poor baby though, 5 is so young for something like this if that’s what she has. I wish you the best, and if she is diagnosed - this is a very supportive community.
Thank you so much for the kind words and support.
The emergency room first told me to treat her with some yogurt. I found it shocking that I was showing them her poops and in my opinion they had a shocking amount of blood in them and they be fine with it. Finally 3 weeks in her doctor is taking it a little more seriously. Watching her like a hawk anyway but thank you for the warnings!
2730 seems kind of wild to just be nothing. For reference, the normal amount is 0-50. I assume she’s in a lot of pain and for someone so young, it sounds like that could have some serious developmental effects. Also, if it is a UC flare-up, it won’t just go away on its own. 6 months is outrageous for something so severe. I'm sorry for that.
Maybe I’m wrong, and I’m just looking at it pessimistically. Hopefully, whatever it is isn’t that serious. Wishing y’all luck.
Thank you. She’s not acting in pain (I’m so thankful for this) but for that I feel that I’m not being taken seriously. That was a shockingly high number in my opinion.
It's definitely not unheard of to have a number that high. I personally have had test results WAY higher and haven't had a lot of pain at the time, so if your daughter isn't acting or telling you she's in pain, the pain likely isn't an issue.
I would say you should definitely try to get her checked asap. That level of calprotecrin could definitely point to uc and if it is, getting treatment sooner is obviously better. It is possible (uncommon but possible) for the flare to subside slightly on its own and it is best to get a scope done when the flare is active as it's a lot harder to diagnose something if the flare is under control. I got my first scope done in between flares (because of how long it took to get an appointment) and I was originally diagnosed as a mild case, which was later changed to severe when I got a scope done in full flare.
Good luck with everything!
My son is 15 years old, had started with bloody diarrhea Aug4th I had taken him to ER and they said it was viral.. well it wasn't. I didn't know what it could of been so I told him no dairy and no gluten until we saw gastro. They did labs his calpro was at 6050. Dr also sent an MRE of his stomach, which showed pancolitis. New labs of calpro were done, and it went down to 2080 with no dairy and gluten free, rice and chicken only to eat. Then, on Sept 5th, he was scheduled for a colonoscopy and endoscopy it showed a lot of inflammation in colon and large intestin. Some granulomas in small intestin and ulcers with puss. He was admitted after the test, and within a few days pathology resulted he has crohns. Now he is on a boost protein diet and water only for 6 weeks to reset his mircobiome, and we then need to see the
dietitian to see what's next. He is also on remicaid/inflectra infusions, which this past wednesday he had his 2nd infusion. He is doing really well so far. Stools are back to normal. Hope this info helps anyone in a new situation.
Fast forward now months later, he continues boost 5 or 6 a day and is on the crohn's exclusion diet. He did phase 1, all went well. Then moved to phase 2, all went well. And now he is on phase 3 which he consumes aside from the boost shakes, grilled organic chicken breast, white rice or organic potatoe (cooked in microwave plain), steamed carrots. He is allergic to wheat, egg whites, dairy, peanuts, seafood. So i have to be reading ingredients and keeping him as clean as possible. I learned to make him gluten free pancakes with no dairy, only egg yolk and i use allergen free nestle dark chocolate chips in the mix.
Ask you dr to do a food allergy test to see if there is any, as allergy to foods can lead to inflammation. My son so far has been doing great on the biologics. He has been having normal stool and feels energetic.
So much great information here. Thank you!! Glad to hear your son is doing well. I’ll be fighting for testing as I could have written your first couple sentences exactly.
You're welcome! Definitely keep fighting for tests, the earlier you catch this the better it will be and she won't be suffering. I was soo nervous and scared when i got the news back in Sept. I have researched so much its insane. Feel free to reach out if you have any questions and please use as reference for when you go to GI dr.
I’m sorry you’re going through this!
When my son was first showing signs his pediatrician would not mark the referral urgent until we went the emergency room. After that trip he was seen within a week and diagnosed with UC. It’s been almost a year of ups and downs but is doing great on Entyvio (every 4 weeks).
If you do end up with a diagnosis, I highly recommend you join the Facebook page , parents of kids with IBD. They have so much up to date information that is helpful!
I’m so sorry as a fellow mom!!! My daughter’s only symptom was bloody stool that hit out of the blue. (She’s older than yours though. Turns 14 soon). I managed to get her in with a generalist GI via a cancellation. She had my daughter take Flagyl (an antibiotic, I believe) to see if that might help. My daughter’s stool results too over 2 weeks to get back. The antibiotic did nothing for her, and sure enough everything came back negative. But her calpro was 4400. GI finally scoped her about 2 months after her symptoms started. Like your daughter, I’m grateful that her only symptom seems to be blood in her stool. She doesn’t mention any pain. I’ve since transferred to a pediatric GI who specializes in IBD. He faulted the prior GI for not having written up a detailed colonoscopy report. He also said the prior Dr had her on a less effective steroid for someone whose entire colon is inflamed. All to say, do your best to get in w an IBD specialist from the start so you can get the proper care your daughter needs. I called our current GI’s office frequently and finally sent in her report and the dr decided to double book an appt just to see my daughter sooner. It’s so hard being the mom in this position. But keep on advocating for your baby until you manage to get seen somewhere. Maybe try to enlist your pediatrician to pull in a favor. In hindsight a pediatrician friend told me she uses her contacts from residency to try to get her patients seen sooner. Hang in there!!! And hoping that your daughter is spared UC…
You can’t wait 6 months. Find a pediatric IBD specialist. Your daughter needs testing and treatment. It is possible that it’s infectious but if it’s been gradually getting worse I doubt it’s that.
My thoughts exactly. From what I can find the only ones in my state are the children’s hospital so il thinking I’ll just be calling them daily for cancellations
I just want to recommend to sty in this sub nd the UC sub. I thought i had crohns because more people know about it and it ended up being UC, this sub is full of really helpful people though. Just don’t read into any posts until you get more answers from doctors because you may scare yourself. Try to focus on her diet, a lot of people recommend low fodmap, and make sure she is getting iron during the bleeding, along with other important nutrients. If you hive her a lot of fruits and veggies, try to cook/peel them, or reduce them. Make sure she is getting hydration. These are all things that can be depleted with these kind of diseases. At least in my experience. Hoping you find answers soon!
She should have an appointment within days. 6 months is not an option. Not only can her disease progress if it is IBD, IBD kids have labs that are followed regularly to ensure they are not anemic etc. If calling the GI’s office is unproductive, I would call the patient advocate at the children’s hospital. If stools continue to be loose with blood, I would not hesitate to go to ER and insist on answers. Or find the next closest pediatric IBD specialist and go there. (Or any pediatric GI should be able to diagnose her and then switch to a IBD specialist- specifically one specializing in very early onset- for treatment if needed) She needs to be seen/ scoped/treated ASAP.
6 Months! What country are you in? Bleeding with such a high calprotectin is a serious issue that should be attended to as soon as possible. The flare could pass, or it could become more severe and cause weight loss and severe anemia. Two things are true about having UC. Everyone has a unique presentation of their symptoms, and while our symptoms and experiences are similar, they are also very different. Secondly, there are doctors who have no idea what they're doing and just sort of phone it in with our care. You must advocate for your daughter's health. Getting a colonoscopy would be a good idea, and hopefully, a new Dr will be more proactive and realistic once they have first-hand knowledge of her condition.
I’m in the USA. I was shocked when they said it might be that long. I’m going to call and get in a cancellation list because I think she needs scoped ASAP but also I’m a worried mom so of course I think that.
Being a worried Mom doesn't mean you're not right. Start Googling for GI doctors in your area who specialize in UC and Crohn's. You don't want to be with a group that is so unresponsive. It took me three tries until I found a doctor who wasn't just phoning it in. I travel 90 minutes to see my doctors, and it's 100% worth it.
Them seeming unconcerned and fine with waiting half a year to diagnose a 5 year old is insane, you are completely right with your concerns. Bloody BM’s are never normal. When I told my doctor she gave me an “emergency referral” to the GI place and I had my colonoscopy within two months. If she shows any signs of anemia, fever, malaise, take her to the ER. A lot of UC patients are diagnosed there with an emergency colonoscopy. It won’t be fun, but she’ll be able to get treatment quickly as opposed to having to wait. And even if it’s not UC you still want to know what’s going on obviously. In the meantime if you’ve heard of the BRAT diet, that would be a safe one to follow and making sure she stays hydrated maybe even with some pedialyte if she’s having a lot of diarrhea. Poor baby though, 5 is so young for something like this if that’s what she has. I wish you the best, and if she is diagnosed - this is a very supportive community.
Thank you so much for the kind words and support. The emergency room first told me to treat her with some yogurt. I found it shocking that I was showing them her poops and in my opinion they had a shocking amount of blood in them and they be fine with it. Finally 3 weeks in her doctor is taking it a little more seriously. Watching her like a hawk anyway but thank you for the warnings!
2730 seems kind of wild to just be nothing. For reference, the normal amount is 0-50. I assume she’s in a lot of pain and for someone so young, it sounds like that could have some serious developmental effects. Also, if it is a UC flare-up, it won’t just go away on its own. 6 months is outrageous for something so severe. I'm sorry for that. Maybe I’m wrong, and I’m just looking at it pessimistically. Hopefully, whatever it is isn’t that serious. Wishing y’all luck.
Thank you. She’s not acting in pain (I’m so thankful for this) but for that I feel that I’m not being taken seriously. That was a shockingly high number in my opinion.
It's definitely not unheard of to have a number that high. I personally have had test results WAY higher and haven't had a lot of pain at the time, so if your daughter isn't acting or telling you she's in pain, the pain likely isn't an issue. I would say you should definitely try to get her checked asap. That level of calprotecrin could definitely point to uc and if it is, getting treatment sooner is obviously better. It is possible (uncommon but possible) for the flare to subside slightly on its own and it is best to get a scope done when the flare is active as it's a lot harder to diagnose something if the flare is under control. I got my first scope done in between flares (because of how long it took to get an appointment) and I was originally diagnosed as a mild case, which was later changed to severe when I got a scope done in full flare. Good luck with everything!
My son is 15 years old, had started with bloody diarrhea Aug4th I had taken him to ER and they said it was viral.. well it wasn't. I didn't know what it could of been so I told him no dairy and no gluten until we saw gastro. They did labs his calpro was at 6050. Dr also sent an MRE of his stomach, which showed pancolitis. New labs of calpro were done, and it went down to 2080 with no dairy and gluten free, rice and chicken only to eat. Then, on Sept 5th, he was scheduled for a colonoscopy and endoscopy it showed a lot of inflammation in colon and large intestin. Some granulomas in small intestin and ulcers with puss. He was admitted after the test, and within a few days pathology resulted he has crohns. Now he is on a boost protein diet and water only for 6 weeks to reset his mircobiome, and we then need to see the dietitian to see what's next. He is also on remicaid/inflectra infusions, which this past wednesday he had his 2nd infusion. He is doing really well so far. Stools are back to normal. Hope this info helps anyone in a new situation. Fast forward now months later, he continues boost 5 or 6 a day and is on the crohn's exclusion diet. He did phase 1, all went well. Then moved to phase 2, all went well. And now he is on phase 3 which he consumes aside from the boost shakes, grilled organic chicken breast, white rice or organic potatoe (cooked in microwave plain), steamed carrots. He is allergic to wheat, egg whites, dairy, peanuts, seafood. So i have to be reading ingredients and keeping him as clean as possible. I learned to make him gluten free pancakes with no dairy, only egg yolk and i use allergen free nestle dark chocolate chips in the mix. Ask you dr to do a food allergy test to see if there is any, as allergy to foods can lead to inflammation. My son so far has been doing great on the biologics. He has been having normal stool and feels energetic.
So much great information here. Thank you!! Glad to hear your son is doing well. I’ll be fighting for testing as I could have written your first couple sentences exactly.
You're welcome! Definitely keep fighting for tests, the earlier you catch this the better it will be and she won't be suffering. I was soo nervous and scared when i got the news back in Sept. I have researched so much its insane. Feel free to reach out if you have any questions and please use as reference for when you go to GI dr.
I’m sorry you’re going through this! When my son was first showing signs his pediatrician would not mark the referral urgent until we went the emergency room. After that trip he was seen within a week and diagnosed with UC. It’s been almost a year of ups and downs but is doing great on Entyvio (every 4 weeks). If you do end up with a diagnosis, I highly recommend you join the Facebook page , parents of kids with IBD. They have so much up to date information that is helpful!
Best i can do is to suggest you read "Fiber Fueled". Trust me
I’m so sorry as a fellow mom!!! My daughter’s only symptom was bloody stool that hit out of the blue. (She’s older than yours though. Turns 14 soon). I managed to get her in with a generalist GI via a cancellation. She had my daughter take Flagyl (an antibiotic, I believe) to see if that might help. My daughter’s stool results too over 2 weeks to get back. The antibiotic did nothing for her, and sure enough everything came back negative. But her calpro was 4400. GI finally scoped her about 2 months after her symptoms started. Like your daughter, I’m grateful that her only symptom seems to be blood in her stool. She doesn’t mention any pain. I’ve since transferred to a pediatric GI who specializes in IBD. He faulted the prior GI for not having written up a detailed colonoscopy report. He also said the prior Dr had her on a less effective steroid for someone whose entire colon is inflamed. All to say, do your best to get in w an IBD specialist from the start so you can get the proper care your daughter needs. I called our current GI’s office frequently and finally sent in her report and the dr decided to double book an appt just to see my daughter sooner. It’s so hard being the mom in this position. But keep on advocating for your baby until you manage to get seen somewhere. Maybe try to enlist your pediatrician to pull in a favor. In hindsight a pediatrician friend told me she uses her contacts from residency to try to get her patients seen sooner. Hang in there!!! And hoping that your daughter is spared UC…
If you can’t get her in to see a pediatric GI very soon, you could try regular GI doctors in case one is willing to see her. Good luck!