I am just kind of starting at the begining...to make is all make sense. I started seeing blood in Emersynes diaper when she was 3 months old. Visible blood. It has continued on and off for 10 months (visibly with what I could see). The Ped brushed it off as being due to the antibiotics I was on at the time, but I took her into see a GI doctor because I didn't feel like that was normal, antibiotics or not.
He decided it was "food allergy" and told me to go off several foods. Visible blood went away, I slowly started eating normal, no blood, she was doing great. I had her stool tested and it came back clean, meaning no blood.
She got an ear infection, went on antibiotics and BAM, large amounts of blood again. Saw th GI doctor and again, he said it was food allergy, and at that point, I decided to see an allergist to actually have her tested because it only seemed to be a problem when exposed to antibiotics. The skin test came back positive for dairy, almonds, peanuts, and oats. So, I cut that out of my diet. The allergist did blood work on her for allergies, and it turns out she has NO allergies in a RAST test, so they decided that she just is very fair, and that it was a false positive on the skin test.
At that point, the allergists consulted together and decided I should just feed her normal, and wean her on to whole milk. About two weeks after we started giving her whole milk, she had blood in her diaper. Again. Quite a bit. So I called the GI doctor, but he was "busy" and leaving town and his assistant said it was "nothing to worry about, unless it got worse."
But I was worried, so I called the Ped to get an appointment for her, and to get some ointment because the poop she has is so acid and so hot it was instantly burning sores on her butt. So I took her in, and while I was there, she did another bloody diaper. A LOT of blood. Like, horrifyingly huge amounts. The doctor was shocked...and all of a sudden, they were on the phone with the GI's office talking to the GI doctor on call, trying to decide whether to hospitalize or not. I spent the next 24 hours scraping bloody poop into containers to "test" for the same things they had already tested. The blood wouldn't stop, so we took her to PCH, which blew her off and sent us home. They told us sometimes babies just have blood in their diaper and blood "can" be normal. NO IT ISN'T!!!!!!!!!!!!
So, at that point, we waited for testing of the stool. It came back "normal" no diseases or infections. I kept her off everything. I still kept nursing her. Well, four weeks ago, she passed some HUGE blood clots. More blood. I think truthfully, there is blood even when it isn't visible most of the time. I actually took some diapers that I didn't see blood in to her ped, and made them test it. They didn't see the need, but I really did. Both diapers tested positive. That was when I really knew there were issues. Generally it is in smaller amounts, but sometimes it is HUGE amounts of blood.
So, I finally agreed to let GI scope her-which freaked me out because I didn't want to put a baby under general anesthesia. (he had suggested to do it three months earlier) The results were very frustrating and concerning.
While her stomach and esophagus look great, her intestines have this "rashy" look to them. When he scoped her colon, she had open bleeding sores, thus the source of her bleeding. But the worst part was that I asked him if she was in pain, and he told me absolutely. She is "inflamed" from her tummy down, plus she has the horrible sores inside her colon. Poop so acidic it burns her butt instantly...this is a really sick baby. I am just sad...and angry, and frankly, very hopeless. I suspect Crohn's.
We got results back yesterday. Basically-we don't know anything more. It is not eosinophil's in her digestive tract-so that is good. But she has horrible inflammation and these bloody sores. I flat out asked him if it was Crohn's, but he told me that while she has the information and sores, she doesn't have permanent damage-yet. He seems so hung up on "allergies" which so far haven't really panned out. So he still wants me to keep her and myself (still nursing) off dairy, oats and nuts, she started flagyll last night for 7 days, and in 3 weeks we are supposed to do a calprotectin test to look at the inflammation, at which time if it is gone, great, if not, he wants to put her on Pentasa for 6-12 months.
This baby has never had a normal poop in her life. every. single. diaper is diarrheah, most often it is bloody (visibly). It smells horrific. It is so toxic it burns her butt and leaves sores if it is not immediately tended to. She started falling off the growth chart as soon as she was born. She was barely 18.6 pounds at 1 year. She is still in 6-9 month clothes at 13 1/2 months old. She has already been hospitalized twice, once at 6 weeks for a high fever and cold, and again at 3 months for severe RSV. She started another fever last night-but don't know why this time. I am so very worried!
So, I guess what I am wondering from you ladies is am I on the right tract? Are we being aggressive enough? What worries me is that he is treating her as a Crohn's patient-without calling her a Crohn's patient. This poor baby is only 13 months old and has been bleeding since 3 months!!! Please, any suggestions or help would be really wonderful.
I have a generally distrust in doctors (REALLY bad experiences)-and I really just need to know if we have found a doctor that really knows his stuff or not.
He decided it was "food allergy" and told me to go off several foods. Visible blood went away, I slowly started eating normal, no blood, she was doing great. I had her stool tested and it came back clean, meaning no blood.
She got an ear infection, went on antibiotics and BAM, large amounts of blood again. Saw th GI doctor and again, he said it was food allergy, and at that point, I decided to see an allergist to actually have her tested because it only seemed to be a problem when exposed to antibiotics. The skin test came back positive for dairy, almonds, peanuts, and oats. So, I cut that out of my diet. The allergist did blood work on her for allergies, and it turns out she has NO allergies in a RAST test, so they decided that she just is very fair, and that it was a false positive on the skin test.
At that point, the allergists consulted together and decided I should just feed her normal, and wean her on to whole milk. About two weeks after we started giving her whole milk, she had blood in her diaper. Again. Quite a bit. So I called the GI doctor, but he was "busy" and leaving town and his assistant said it was "nothing to worry about, unless it got worse."
But I was worried, so I called the Ped to get an appointment for her, and to get some ointment because the poop she has is so acid and so hot it was instantly burning sores on her butt. So I took her in, and while I was there, she did another bloody diaper. A LOT of blood. Like, horrifyingly huge amounts. The doctor was shocked...and all of a sudden, they were on the phone with the GI's office talking to the GI doctor on call, trying to decide whether to hospitalize or not. I spent the next 24 hours scraping bloody poop into containers to "test" for the same things they had already tested. The blood wouldn't stop, so we took her to PCH, which blew her off and sent us home. They told us sometimes babies just have blood in their diaper and blood "can" be normal. NO IT ISN'T!!!!!!!!!!!!
So, at that point, we waited for testing of the stool. It came back "normal" no diseases or infections. I kept her off everything. I still kept nursing her. Well, four weeks ago, she passed some HUGE blood clots. More blood. I think truthfully, there is blood even when it isn't visible most of the time. I actually took some diapers that I didn't see blood in to her ped, and made them test it. They didn't see the need, but I really did. Both diapers tested positive. That was when I really knew there were issues. Generally it is in smaller amounts, but sometimes it is HUGE amounts of blood.
So, I finally agreed to let GI scope her-which freaked me out because I didn't want to put a baby under general anesthesia. (he had suggested to do it three months earlier) The results were very frustrating and concerning.
While her stomach and esophagus look great, her intestines have this "rashy" look to them. When he scoped her colon, she had open bleeding sores, thus the source of her bleeding. But the worst part was that I asked him if she was in pain, and he told me absolutely. She is "inflamed" from her tummy down, plus she has the horrible sores inside her colon. Poop so acidic it burns her butt instantly...this is a really sick baby. I am just sad...and angry, and frankly, very hopeless. I suspect Crohn's.
We got results back yesterday. Basically-we don't know anything more. It is not eosinophil's in her digestive tract-so that is good. But she has horrible inflammation and these bloody sores. I flat out asked him if it was Crohn's, but he told me that while she has the information and sores, she doesn't have permanent damage-yet. He seems so hung up on "allergies" which so far haven't really panned out. So he still wants me to keep her and myself (still nursing) off dairy, oats and nuts, she started flagyll last night for 7 days, and in 3 weeks we are supposed to do a calprotectin test to look at the inflammation, at which time if it is gone, great, if not, he wants to put her on Pentasa for 6-12 months.
This baby has never had a normal poop in her life. every. single. diaper is diarrheah, most often it is bloody (visibly). It smells horrific. It is so toxic it burns her butt and leaves sores if it is not immediately tended to. She started falling off the growth chart as soon as she was born. She was barely 18.6 pounds at 1 year. She is still in 6-9 month clothes at 13 1/2 months old. She has already been hospitalized twice, once at 6 weeks for a high fever and cold, and again at 3 months for severe RSV. She started another fever last night-but don't know why this time. I am so very worried!
So, I guess what I am wondering from you ladies is am I on the right tract? Are we being aggressive enough? What worries me is that he is treating her as a Crohn's patient-without calling her a Crohn's patient. This poor baby is only 13 months old and has been bleeding since 3 months!!! Please, any suggestions or help would be really wonderful.
I have a generally distrust in doctors (REALLY bad experiences)-and I really just need to know if we have found a doctor that really knows his stuff or not.
