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I need help as to where to go please!

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.
 

Jennifer

Adminstrator
Hi DeeD and welcome to the forum! :D

I'm really sorry to hear about your little one and that this has been going on for so long. :(

One thing really struck me while reading your story. When you flat out asked the GI if it was Crohn's and they responded with, "she doesn't have permanent damage-yet," honestly that's one of if not the worst thing I've ever heard on this forum. What does that have to do with anything? We don't want permanent damage plus its a baby. Honestly you need to find another GI right away. I'd also take her to a different hospital even if its far away. Sometimes we don't have the best pick of doctors in our immediate area and we have to travel to get proper treatment. My first GI was 4 hours away and my dad would have to take time off of work just to get me to my appointments. Try using our doctor directory to see if you can find someone better in your state and call around to make sure you're seeing a good Pedicatric GI. http://www.crohnsforum.com/doctor/

I copied your thread and put the copy into the Parent's section. You'll find a lot of help there too. http://www.crohnsforum.com/forumdisplay.php?f=49

I hope your little one gets the treatment they need and starts feeling better soon. I really think you need to find new doctors immediately. Keep us posted on how she's doing and how you're doing as well. :ghug:
 

SarahBear

Moderator
Hi, DeeD! Welcome to the forum! I'm so sorry you've had reason to find us. :(

The same thing Jennifer pointed out caught my eye. "No permanent damage yet." That did not answer your question, and permanent damage isn't a requirement for a Crohn's diagnosis. That honestly makes no sense. I also suggest finding another GI immediately. This one isn't making any effort to help you and your baby girl and that's completely unacceptable. I agree with Jennifer again that traveling to see a good GI is definitely worth it, especially right now. And absolutely be as aggressive as you need to be to get her diagnosed and properly treated. Hopefully as soon as she gets in with a good GI, there will be no need for that, though.

Do you know if they took any biopsies when they scoped her? If so, have you heard those results?

:hug: Again, I'm so sorry to hear what you are dealing with. I really hope things get better for you and your little sweetheart soon!
 
My first concern regarding your story (other than the indifference you received from doctors with an obviously abnormal bloody stool report!) is the fact that you have continued to nurse. Many people who have Crohn's and other bowel disorders cannot tolerate lactose. Breast milk has lactose in it just as any animal's milk. I would suggest you try a lactose-free formula for her to see if it makes any difference. I could not nurse my second son because he was lactose-intolerant and I had to find special formula for him. Although it might be difficult for you to consider, please think about it. Making dietary changes is often the first step toward relief for IBD sufferers. Since her diet is primarily breast milk, it's probably a good idea to try to not give it to her and see if she gets relief from it.
 
you are making great observations here, and i think can help.

the blood you noticed after antibiotics, is no coincidence, i developed crohn's after taking antibiotics, and i have found new studies in intestinal bacteria that show antibiotics can damage the good bacteria in some, but not all people.

the increase in blood and diarhea you noticed after the milk consumption? the pathogens that take over the intestine after the good bacteria have been killed off by antibiotics love the sugar in milk, lactose, and there is a special diet called the Specific Carbohydrate Diet that is low in lactose(milk sugar) and sucrose(refined table sugar), that people with IBD use to manage symptoms like diarhea. i have used this diet to eliminate blood and diarhea for 5 years now. but the disease isnt cured from this and have a good deal of inlflammation that is hard to control.

there is a new treatment being developed to restore the damaged bacteria in the intestines in IBD patients called a fecal transplant, where bacteria is obtained from a healthy donor and administered with an enema or a pill to the patient. it has seemed to cure people with ulcerative colitis which is one of the two forms of IBD, and they have only recently begun studys on crohn's disease. here is a post i have about fecal transplants- http://www.crohnsforum.com/showthread.php?t=52400

in the meantime, give your child cheese or yogurt instead of milk as it is lower in lactose then milk, and avoid any foods high in sugar, this include fruits, but especially refined sugar and get on the meds asap.

here is a book about the SCD diet- http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818

feel free to message me for any more info or questions.
 
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