Managing Crohns
Hi all,
My daughter is 20 months old and was diagnosed with crohns at a year old, but had been symptomatic since about 2 months old.
No, we don't have a family history of it. Yes, dr's are eating her up because she is a rare case. Yes, she is apart of IBD studies.
Anyways,
We are at a standstill with her care. Entire pediatric GI at the hospital took a vote that they ethically have to postpone infusions.
My daughter is NPO and has a g-tube as form of treatment. This worked for about a month and now we are back to right where we were. She is up AT LEAST 3x a week at night screaming and begging us for help and telling us her belly hurts, she is much like a ragdoll during the day, her face is very pale, her terrible eye bags are coming back, and she feels warm. No fever- just warm. She screams in pain before she goes to the bathroom and there is blood and mucous in her diapers.
These are all classic symptoms we dealt with prior, so nothing terribly alarming. She had an ultrasound last week to check her inflammation and my daughter has a looot of medical trauma and she was hyperventilating, screaming, and kicking. This made it to that the GI dr wasn't able to get great imaging. The GI dr repeatedly told us there was a large red flag spot on her right side of her colon, but the imaging she was able to get did not match what she saw in real time.
All of this was just shrugged off. In addition to this, my daughter is ate up with crohns from the duodenum down, so even then, the colon is not the only thing that is of concern.
We just kind of get shrugged off and just told that this a way of life for now until they decide we can do something else. This has left my husband and I feeling defeated, we can't leave my daughter with anyone because she has the episodes and no one knows what to do. Heck, after two years, we barely know what to do. We can just sit there and rock her and love on her while she screams for help. We pray that tylenol will do the trick. Last week she literally told me that she wasn't okay.
I understand that infusions for her age have not really been done and they need more "evidence" to do off-label treatment. But we are desperate.
All of this to say, anyone else out there with young kiddos with crohns?
And to those that are adults, what are some more homeopathic things you do to manage crohns?
Thank you to those that take the time to read this and respond. I know it is probably exhausting having people ask you questions. I just can't really ask my daughter much because her vocab is limited and she talks like a caveman, lol.