My daughter was diagnosed with Crohn's almost a year ago at age 9 1/2. It has been quite a year! We were surprised with her diagnosis since we knew she had loose stools, but no other obvious symptoms or problems. Had blood work done to test for some food allergies and found out she was anemic with hemo at 8.9! Then found blood in stools through stool test so after upper and lower scope, they diagnosed her. We feel our biggest challenge has been that she tested positive for C Dif through stool tests so she has been on many rounds of Flagyl and Vancomyocin treatments throughout the year for that with little if any results. After getting another opinion from the Infectious Disease doctor, she feels that C Dif isn't the issue and that we just need to get her Crohn's under control. But GI doc keeps going back to that. They decided Imuran wasn't working so we started Remicade in Oct. and did the first 3 "booster" doses. Still haven't seen changes in her loose stools so feeling very frustrated! Hoping next dose in 2 weeks will be the one that finally helps! She has also taken Asacol from the start and tried a round of Prednisone for about 6 weeks. Complains of stomach aches but never super severe. We've done some diet changes but nothing major as she is very picky to begin with! Her eating habits have gotten pretty bad but we have taken her off milk and ice cream and try to limit cheese and yogurt, etc. Any advice is welcome. We are debating whether it's time for a second opinion but I know it is common for it to take time to find the right treatment for this disease! Looking forward to sharing stories with others.
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Daughter diagnosed a year ago
- Thread starter mom2paige
- Start date
Angrybird
Moderator
- Location
- Hertfordshire
Hello and welcome to the forum.
I am sorry to hear that your daughter is still having problems with the tum
Just to check have any recent tests been done to confirm that the c-diff is sorted? If not why does the second doc not think this is not the cause of the continued symptoms your daughter is experiencing? It certainly cannot hurt to get another opinion with up to date tests being done for both the c-diff and the crohn's to see which one is still active. With regards to the food side of things I do wonder whether enteral nutrition would be an option, this has been shown to have good results with kids for settling the tum without the side effects that you can get with meds. We do also have a parents forum that is worth checking out so you can have a chat with the wonderful mums and dads here: http://www.crohnsforum.com/forumdisplay.php?f=49.
Please keep us updated on how you get on.
AB
xx
I am sorry to hear that your daughter is still having problems with the tum
Just to check have any recent tests been done to confirm that the c-diff is sorted? If not why does the second doc not think this is not the cause of the continued symptoms your daughter is experiencing? It certainly cannot hurt to get another opinion with up to date tests being done for both the c-diff and the crohn's to see which one is still active. With regards to the food side of things I do wonder whether enteral nutrition would be an option, this has been shown to have good results with kids for settling the tum without the side effects that you can get with meds. We do also have a parents forum that is worth checking out so you can have a chat with the wonderful mums and dads here: http://www.crohnsforum.com/forumdisplay.php?f=49.Please keep us updated on how you get on.
AB
xx
Hi and welcome I am so sorry to hear that your baby is not feeling well. The suggestion of looking into getting her started on EN is good. I am currently using it to give my bowels some rest. I also agree that you might want to look into getting a second opinion. IF she is still having symptoms then something might be getting missed. Have they checked her vitamin and electrolytes recently if they are low ,which is common in people with chronic loose poo, could be making her feel sick as well.
I hope she starts to feel better soon.
I hope she starts to feel better soon.
Hi and welcome
I'm from the parents forum.
My Grace has dealt with this and some others on the parents forum have.
QueenGothel has done her fare share of research on c diff.
I'm sure when she's able she'll be along.
Please feel free to stop by the Parents section.
They've been a great support to me and I know they will be to you.
I'm from the parents forum.
My Grace has dealt with this and some others on the parents forum have.
QueenGothel has done her fare share of research on c diff.
I'm sure when she's able she'll be along.
Please feel free to stop by the Parents section.
They've been a great support to me and I know they will be to you.
- Location
- Michigan, USA
Hi momtopaige, sorry about the diagnosis but glad you found us here. C.diff can be nasty if it keeps coming back. Are her symptom the normal symptoms? Fevers, diarrhea...you know the drill?
When they thought my DD was having reoccurring c.diff the first thing they suggested was Fecal Transplant. Success rate is above 90% with first transplant.
Here is some info on that.
http://cdiffknowledgecentre.com/dow...ion_with_fecal_microbiota_transplantation.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3223289/
This seems to be the best way according to the infectious disease doctor whe had a consult with. Our hospital does not do them but recommends at home fecal transplants following protocols of course.
More info in the research section here.
http://www.crohnsforum.com/showthread.php?t=44678
NEVER ATTEMPT TO DO THIS WITHOUT A DOCTORS CONSENT.
Best of luck to you.
When they thought my DD was having reoccurring c.diff the first thing they suggested was Fecal Transplant. Success rate is above 90% with first transplant.
Here is some info on that.
http://cdiffknowledgecentre.com/dow...ion_with_fecal_microbiota_transplantation.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3223289/
This seems to be the best way according to the infectious disease doctor whe had a consult with. Our hospital does not do them but recommends at home fecal transplants following protocols of course.
More info in the research section here.
http://www.crohnsforum.com/showthread.php?t=44678
NEVER ATTEMPT TO DO THIS WITHOUT A DOCTORS CONSENT.
Best of luck to you.
- Location
- Michigan, USA
Something else I am researching right now is SIBO. Small intestinal Bacterial Overgrowth. Here is the info I have found so far.
http://www.crohnsforum.com/showthread.php?t=45421
http://www.crohnsforum.com/showthread.php?t=45421
What the others have said ...
also if things haven't gotten better and it is year- then yes a second opinion is needed.
DS had a 2nd and third opinion... just to keep things interesting.
but it got him into remission so I do not regret it.
often a fresh set of eyes is needed.
It did take him until almost a week or two after the 3rd infusion to really feel good.
good luck
also if things haven't gotten better and it is year- then yes a second opinion is needed.
DS had a 2nd and third opinion... just to keep things interesting.
but it got him into remission so I do not regret it.
often a fresh set of eyes is needed.
It did take him until almost a week or two after the 3rd infusion to really feel good.
good luck