Hello all my 12-year-old daughter was recently diagnosed with Crohn’s. Initially it was indeterminate colitis and with all the testing and the video capsule, MRE, the GI doctor is 95% sure it is Crohn’s. The biopsy came back inconclusive as it did not show chronicity. We did 2 months of Budesonide which did stop the blood in the stool. Video capsule still show inflammation in the small intestine. Next step is 6 mp or Remicade. I am terrified of both. I found a website on MAP testing and antibiotic therapy. Just wanted to know if anybody in the Dallas-Fort Worth sees a G.I. doctor that specializes in MAP testing and or treatment. The last six months have been an emotional roller coaster and any help is greatly appreciated.
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MAP and Doctor in Fort Worth/Dallas
- Thread starter SZA
- Start date
When Ds was dx at age 7
I was terrified of all meds
Pentasa
6-mp
Methotrexate
Remicade
All of it
I was determined to just have him drink formula only (exclusive enteral nutrition-Een)
No side effects
It would heal the gut and as a parent I wouldn’t have to face any possible side effects
10 years later
I still fear somewhat POSSIBLE side effects that may happen
On ALL drugs not just crohns meds
it’s been a journey
Knowing I blindly gave infant Tylenol to the kids as babies
Or amoxicillin
Why because the doc said they were needed and I gave no thought to possible side effects
Both meds can cause liver failure, Steven Johnson syndrome or death
same with putting my kids as babies or children in a car
Each car ride their risk of death was 1 in 250
Each time in the pool 1 in 1000
Unfortunately life has a lot of risks to get a better quality of life
Most of the time we go blindly forward without those numbers or risks being put in front of us as parents
Crohns parents have things taken and shovedin our face
Bad disease which can cause extreme damage to our child Gi tract or take their life if not treated properly.
and scary meds that list horrible possible side effects
Understand that the list is POSSIBLE side effects not given side effects
The benefits outweigh the risks which is why the docs suggest a med
Ds has been on
Pentasa (not recommended for monotherapy for crohns )
6-mp (not recommended for kids any more due to lymphoma increased risk )
methotrexate (doesn’t have increased lymphoma risk)
Remicade /humira biologics (for 6 years ) which taken as monotherapy do not have T cell lymphoma risk
he currently has been on Stelara and methotrexate for the past three years
it works well
biolgics for my kiddo have been the best thing for the past 9 years (wow 9 years -he is 17)
No issues
No side effects just a healthy intestine and joints that are not actively inflamed (dx with jia at age 10)
6-mp made his liver enzymes go through the roof at age 8 so after 8 months of trying to fix that he was switched to methotrexate
methotrexate injections made him feel sick like he had the flu daily and wasn’t strong enough
He developed an extra intestinal manifestation (EIM) of vasculitus
so he was switched to remicade at the ripe old age of 8.
I cried for days and thought I would throw upwhile he got each infusion
then an amazing thing happened
My kid became normal
He could swim at swim practice like a kid should
He could eat and play and run
He gained weight and grew
I look back at the pictures from dx andshudder
He had dark circles and was pale and thin
Slept a lot
now at 17 a normal kiddo in height abd weight
5’10” and 159 lbs
Which is nothing short of amazing
Considering from age 5 to 7 he never gained an ounce
If you have concerns over meds raise them
There is no magically right path
each med has risks - every med has risks
The med that your child’s body responds to is the right meds
Which may not be the med you picked
second get a second opinion
Send her records /biopsy slides and imaging /pill cam results to anothe hospital (children’s of Philadelphia, Boston children’s or Cincinnati children’s ) they will give a review and tell if it’s truly crohns
It’s always good to get a fresh set of eyes
Ds has had a second opinion 3 times now
All came back as crohns btw
good luck
I was terrified of all meds
Pentasa
6-mp
Methotrexate
Remicade
All of it
I was determined to just have him drink formula only (exclusive enteral nutrition-Een)
No side effects
It would heal the gut and as a parent I wouldn’t have to face any possible side effects
10 years later
I still fear somewhat POSSIBLE side effects that may happen
On ALL drugs not just crohns meds
it’s been a journey
Knowing I blindly gave infant Tylenol to the kids as babies
Or amoxicillin
Why because the doc said they were needed and I gave no thought to possible side effects
Both meds can cause liver failure, Steven Johnson syndrome or death
same with putting my kids as babies or children in a car
Each car ride their risk of death was 1 in 250
Each time in the pool 1 in 1000
Unfortunately life has a lot of risks to get a better quality of life
Most of the time we go blindly forward without those numbers or risks being put in front of us as parents
Crohns parents have things taken and shovedin our face
Bad disease which can cause extreme damage to our child Gi tract or take their life if not treated properly.
and scary meds that list horrible possible side effects
Understand that the list is POSSIBLE side effects not given side effects
The benefits outweigh the risks which is why the docs suggest a med
Ds has been on
Pentasa (not recommended for monotherapy for crohns )
6-mp (not recommended for kids any more due to lymphoma increased risk )
methotrexate (doesn’t have increased lymphoma risk)
Remicade /humira biologics (for 6 years ) which taken as monotherapy do not have T cell lymphoma risk
he currently has been on Stelara and methotrexate for the past three years
it works well
biolgics for my kiddo have been the best thing for the past 9 years (wow 9 years -he is 17)
No issues
No side effects just a healthy intestine and joints that are not actively inflamed (dx with jia at age 10)
6-mp made his liver enzymes go through the roof at age 8 so after 8 months of trying to fix that he was switched to methotrexate
methotrexate injections made him feel sick like he had the flu daily and wasn’t strong enough
He developed an extra intestinal manifestation (EIM) of vasculitus
so he was switched to remicade at the ripe old age of 8.
I cried for days and thought I would throw upwhile he got each infusion
then an amazing thing happened
My kid became normal
He could swim at swim practice like a kid should
He could eat and play and run
He gained weight and grew
I look back at the pictures from dx andshudder
He had dark circles and was pale and thin
Slept a lot
now at 17 a normal kiddo in height abd weight
5’10” and 159 lbs
Which is nothing short of amazing
Considering from age 5 to 7 he never gained an ounce
If you have concerns over meds raise them
There is no magically right path
each med has risks - every med has risks
The med that your child’s body responds to is the right meds
Which may not be the med you picked
second get a second opinion
Send her records /biopsy slides and imaging /pill cam results to anothe hospital (children’s of Philadelphia, Boston children’s or Cincinnati children’s ) they will give a review and tell if it’s truly crohns
It’s always good to get a fresh set of eyes
Ds has had a second opinion 3 times now
All came back as crohns btw
good luck
Anti-MAP treatment is promising, but it's still in testing and the results so far are not amazing. It may help some people, but I wouldn't get too excited. You'll also have a hard time finding a doctor who will prescribe it.
EEN is a more proven treatment with better results. Biologics also help some people, and they're the standard long-term treatment. Antibiotics may be useful in addition to other treatments.
EEN is a more proven treatment with better results. Biologics also help some people, and they're the standard long-term treatment. Antibiotics may be useful in addition to other treatments.
I agree with Pangolin about looking into EN (special milkshakes you drink instead of food for a few weeks) and then when you reintroduce food follow an IBD diet (none work for everyone but the ones that help some people are SCD, CDED and IBD-AID).
If this doesn’t completely reduce inflammation then I would seriously consider a biologic. There are risks but uncontrolled Crohn’s poses serious risks as well. I’m sorry to say it and wish you weren’t in this position of weighing up risks and benefits for your beautiful child.
Anti map drugs (like all the Crohn’s options) work amazingly for some and do nothing for others. The side effects read a lot better but the big issue is risk of antibiotic resistance developing. There also seem to be different views about whether you can stop them without relapsing.
There are lots of stories of poorly kids really thriving on biologics so they can be a really good option.
Also please hold onto there are lots of new drugs and possibilities being worked on and researched so whatever you need to do now to get disease under control, there may well be more treatment options down the line.
If this doesn’t completely reduce inflammation then I would seriously consider a biologic. There are risks but uncontrolled Crohn’s poses serious risks as well. I’m sorry to say it and wish you weren’t in this position of weighing up risks and benefits for your beautiful child.
Anti map drugs (like all the Crohn’s options) work amazingly for some and do nothing for others. The side effects read a lot better but the big issue is risk of antibiotic resistance developing. There also seem to be different views about whether you can stop them without relapsing.
There are lots of stories of poorly kids really thriving on biologics so they can be a really good option.
Also please hold onto there are lots of new drugs and possibilities being worked on and researched so whatever you need to do now to get disease under control, there may well be more treatment options down the line.