I've been lurking for months, off and on. My 15 year old daughter was diagnosed Nov. 2015 with Crohn's Disease. No known family history. I believe it was pharmaceutically induced. As her mother, I have a lot of issues with BIG pharma and "modern" medicine that predate her diagnosis. She has not responded well to any of the treatments and we're still searching...she's been on prednisone, pentasa, entocort, and LDN. We're seeing an integrative specialist after going the mainstream route in the beginning. I'm not ready to commit her to a lifetime of pharmaceutical intervention when there are so many plant based (herbal) alternatives. I'm looking at boswellia, turmeric, and others. Needed to post so I can read some of the private threads...:sign0085:
-
Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
I'm new here...
- Thread starter motherbear
- Start date
So there is scd which has a lot of success in kids
Tagging optomistic
Een ( formula only no foods )
The list of drugs you tried so far are typically very mild and don't tend to work with kids since their disease has a more severe course
Finding the cause of crohns might be nice but getting your dd healthy for now since crohns can be deadly
More than one parent has sat in the icu with their child - at which point you want something that works regardless of meds
Pentasa is only a 5-Asa meaning it acts as a cream to treat the top layer of the intestine
Which is ok for UC but not recommended as a monotherapy for crohns at all since crohns affects all layers of the intestine not just the top
LDN has had limited success but again mainly for mild disease which most kids do not have .
Pred /entocort are both steriods but not recommended for long term use and for some are not enough
So that leaves you with Diet ( SCD /EEN)
And immunosuppressants /biologics
Going to tag Dusty
Clash
Crohnsinct
Mehita
Jmrogers
Maya142
Farmwife
Pilgrim
Most parents do not WANT their kids on any meds at all
We all try other things first
Few have success with diet alone ( very few) but worth a trying
But finding the combo that works for your child is key
Tagging optomistic
Een ( formula only no foods )
The list of drugs you tried so far are typically very mild and don't tend to work with kids since their disease has a more severe course
Finding the cause of crohns might be nice but getting your dd healthy for now since crohns can be deadly
More than one parent has sat in the icu with their child - at which point you want something that works regardless of meds
Pentasa is only a 5-Asa meaning it acts as a cream to treat the top layer of the intestine
Which is ok for UC but not recommended as a monotherapy for crohns at all since crohns affects all layers of the intestine not just the top
LDN has had limited success but again mainly for mild disease which most kids do not have .
Pred /entocort are both steriods but not recommended for long term use and for some are not enough
So that leaves you with Diet ( SCD /EEN)
And immunosuppressants /biologics
Going to tag Dusty
Clash
Crohnsinct
Mehita
Jmrogers
Maya142
Farmwife
Pilgrim
Most parents do not WANT their kids on any meds at all
We all try other things first
Few have success with diet alone ( very few) but worth a trying
But finding the combo that works for your child is key
I appreciate the responses. I didn't mean to imply that Rx is out. I'm starting her back on Budesonide this morning to stop the slide back down the slope. She had an allergic reaction to the pentasa and we are still searching for the combo that will work. Tried radical diet change as suggested by nutritionist. That was a disaster. Almost a year into this and it's still a rollercoaster...
Has she tried Mtx /Aza or 6-mp?
Those work for some kids
Other need biologics
Ds spent a year miserable tried it all
And then tried remicade ( scared us to death to try this )
But once he got better we thought of biologics as a basket of kittens
Just love them
Those work for some kids
Other need biologics
Ds spent a year miserable tried it all
And then tried remicade ( scared us to death to try this )
But once he got better we thought of biologics as a basket of kittens
Just love them
I would agree -- most kids do need at least immmunomodulators like 6MP/Imuran/Methotrexate.
My kiddo was put on Remicade and MTX when she was diagnosed. It took a couple months to kick in, but when it did, she felt normal! And 8 months later, when we did scopes, they looked SO much better. All the ulcers in her colon had healed -- in fact, the doctor said her colon looked "beautiful." There was mild inflammation in her TI but nothing like before.
Honestly, at some point, as you see you child suffer, the meds become less scary than the disease. With the meds, yes, you MAY have some side effects. But it's only a possibility.
But with untreated disease is VERY likely that you will have complications such as fistulae, abscesses, strictures, poor growth etc.
There are several parents here whose kids landed in either the PICU or OR because they got so sick at diagnosis. Now they are thriving with treatment.
We had a bad experience with an integrative medicine specialist. There is a thread on the parents forum about it: http://www.crohnsforum.com/showthread.php?t=78927
Please make sure you are very careful if she is seeing a integrative specialist. I'd run everything by her pediatric GI.
My daughter got sicker while seeing an integrative medicine specialist, who insisted she had Lyme disease and treated her with antibiotics.
My kiddo was put on Remicade and MTX when she was diagnosed. It took a couple months to kick in, but when it did, she felt normal! And 8 months later, when we did scopes, they looked SO much better. All the ulcers in her colon had healed -- in fact, the doctor said her colon looked "beautiful." There was mild inflammation in her TI but nothing like before.
Honestly, at some point, as you see you child suffer, the meds become less scary than the disease. With the meds, yes, you MAY have some side effects. But it's only a possibility.
But with untreated disease is VERY likely that you will have complications such as fistulae, abscesses, strictures, poor growth etc.
There are several parents here whose kids landed in either the PICU or OR because they got so sick at diagnosis. Now they are thriving with treatment.
We had a bad experience with an integrative medicine specialist. There is a thread on the parents forum about it: http://www.crohnsforum.com/showthread.php?t=78927
Please make sure you are very careful if she is seeing a integrative specialist. I'd run everything by her pediatric GI.
My daughter got sicker while seeing an integrative medicine specialist, who insisted she had Lyme disease and treated her with antibiotics.