My daughter was diagnosed with LC last year- she will be 9 in October. She also has eczema- with areas in her face that will not heal. She tries very hard to to scratch and pick at those areas. She has taken Pentsa with no effect. Two weeks into Uceris had to stop b/c of systemic absorption- but in those 2 weeks she had the most normal stool I've seen in a long long while and her skin was beautiful. We switch to Entocort for a slow ween- but everything thing devolved- back to watery stools along with the skin flare ups. Her GI Dr. Was sure she had a wheat sensitivity- but we are 6 wks in on a GF diet and it's gotten worse - now with more urgency and night time accidents. We are not sure what to do and out heart breaks for her. We started an Imodium today before school and also started fiber twice a day. Any advice is welcomed and appreciated. Thx for sharing your stories and your continued journey's. It looks as though we/she will be dealing with this for the foreseeable future. Thx for letting me share her story.
My daughter's story
- Thread starter Debyeskey
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Welcome to the forum. So sorry to hear of your struggles. I don't have experience with LC as my son has CD.
I'm assuming that LC is treated much the same as CD in that you have the same pyramid of meds:
5ASAs- pentasa Asacol etc
Immune modulators: imuran, 6mp and methotrexate
Biologics: remicade, humira etc
And then use of entocort to help initially quell the inflammation while waiting for maintenance meds to take over.
With CD there is also the use of EEN (exclusive enteal nutrition) which is formula only for a period of time. It has the same efficacy as prednisone in CD but I have no idea about LC.
There is ano LC sub- forum on the site that may also give you others experiences with LC.
I hope your daughter finds remission soon.
I'm assuming that LC is treated much the same as CD in that you have the same pyramid of meds:
5ASAs- pentasa Asacol etc
Immune modulators: imuran, 6mp and methotrexate
Biologics: remicade, humira etc
And then use of entocort to help initially quell the inflammation while waiting for maintenance meds to take over.
With CD there is also the use of EEN (exclusive enteal nutrition) which is formula only for a period of time. It has the same efficacy as prednisone in CD but I have no idea about LC.
There is ano LC sub- forum on the site that may also give you others experiences with LC.
I hope your daughter finds remission soon.
I'm terribly sorry to read about your daughter condition. I hope she finds something that helps.
That is what I have LC/MC. I might suggest if you have not done so already, you visit Wayne Persky's web sight. He wrote a book on LC and has a support sight to go along with it. His Potty People LC/MC page can be seen at ~
http://www.perskyfarms.com/phpBB2/viewforum.php?f=2&sid=4064cb44af4327d6e6b11feda6b7e74e
To add, his sight is largely about eating gluten free. It has other addiction information though that can be helpful, with mention on medications that help with LC such as low dose naltrexone (LDN), nutrients such as vitamin D, and addition diet information that can help.
For my personal story, I've been able at times to completely get myself well with diet ideas. My skin became nice and glowing during that time. My eye color changed from green to bright blue. My energy levels picked up nicely also.
The problem for me has been finding what in the diet is causing me problems. Wheat gluten is a problem for me but probably not a huge problem. At the moment I'm following a wild caught fight diet. The idea being that what ever is fed to live stock could show up in the meat, egg, dairy etc. As examples , soy and alfalfa are common feed fed to animals, and also common allergens for humans. My energy levels have picked up decently as a result and the gut is improved. Hopefully with time I'll continue to improve.
That is my story and what works for me might not work for your daughter.
That is what I have LC/MC. I might suggest if you have not done so already, you visit Wayne Persky's web sight. He wrote a book on LC and has a support sight to go along with it. His Potty People LC/MC page can be seen at ~
http://www.perskyfarms.com/phpBB2/viewforum.php?f=2&sid=4064cb44af4327d6e6b11feda6b7e74e
To add, his sight is largely about eating gluten free. It has other addiction information though that can be helpful, with mention on medications that help with LC such as low dose naltrexone (LDN), nutrients such as vitamin D, and addition diet information that can help.
For my personal story, I've been able at times to completely get myself well with diet ideas. My skin became nice and glowing during that time. My eye color changed from green to bright blue. My energy levels picked up nicely also.
The problem for me has been finding what in the diet is causing me problems. Wheat gluten is a problem for me but probably not a huge problem. At the moment I'm following a wild caught fight diet. The idea being that what ever is fed to live stock could show up in the meat, egg, dairy etc. As examples , soy and alfalfa are common feed fed to animals, and also common allergens for humans. My energy levels have picked up decently as a result and the gut is improved. Hopefully with time I'll continue to improve.
That is my story and what works for me might not work for your daughter.
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We have a parents a group
Here
http://www.crohnsforum.com/forumdisplay.php?f=49
For skin does she see a dermatologist who is familiar with LC /Ibd/crohns etc
This is important since crohns can have skin manifestations
Ezcema needs lots of steriods till long after you see good skin for a while
Wet wrapping helps tremendously
Oral steriods tend to clear ezcema but it can get worse when they are stopped
Ds had horrid skin due to remicade so meds can make skin issues worse
Links to ezcema /wet wraps
http://community.kidswithfoodallergies.org/topic/frequently-referred-to-eczema-resources-1
Kids with food allergies
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Here
http://www.crohnsforum.com/forumdisplay.php?f=49
For skin does she see a dermatologist who is familiar with LC /Ibd/crohns etc
This is important since crohns can have skin manifestations
Ezcema needs lots of steriods till long after you see good skin for a while
Wet wrapping helps tremendously
Oral steriods tend to clear ezcema but it can get worse when they are stopped
Ds had horrid skin due to remicade so meds can make skin issues worse
Links to ezcema /wet wraps
http://community.kidswithfoodallergies.org/topic/frequently-referred-to-eczema-resources-1
Kids with food allergies
Requires login but free
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Have you considered going back to something like Uceris or Prednisone, while putting her on a maintenance med? I don't know much about LC, but for Crohn's typically an immunomodulator like 6MP or Methotrexate is needed. A 5-ASA like Pentasa is usually not enough.
6MP/MTX usually take 6-12 weeks to kick in, which is why a steroid is used to induce remission. Then the steroid is weaned as the med begins to work.
Some doctors start with the "weakest" meds like Pentasa and then go up the pyramid. Others start at the top to get the disease under control quickly. So something like Remicade or Humira would be used, often in combination with an immunomodulator, to control the disease. As the kiddo gets better, meds are reduced, if possible (in some cases, they are maintained).
It sounds like she definitely needs stronger medication. Have you considered a second opinion?
6MP/MTX usually take 6-12 weeks to kick in, which is why a steroid is used to induce remission. Then the steroid is weaned as the med begins to work.
Some doctors start with the "weakest" meds like Pentasa and then go up the pyramid. Others start at the top to get the disease under control quickly. So something like Remicade or Humira would be used, often in combination with an immunomodulator, to control the disease. As the kiddo gets better, meds are reduced, if possible (in some cases, they are maintained).
It sounds like she definitely needs stronger medication. Have you considered a second opinion?
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I have no experience with colitis or any form of IBD, but I was wondering about the GF diet. I, myself, have a wheat allergy (I cannot even use it in topical products) and Celiac disease. Many of the GF substitutes contain corn and rice and a lot of people with gluten sensitivities are also sensitive to corn (with a small percentage being sensitive to rice). You might want to eliminate these from her diet as well and stick with a more Paleo or Primal based diet. There are bread substitutes out there (Against the Grain is my favorite). However, the Paleo/Primal diets recommend very little convenience foods and stick with minimally processed ingredients. I found that the Primal diet was best for me because it wasn't quite as restrictive as the Paleo diet, but Paleo is the best for people with food sensitivities because there is no dairy included.
http://www.marksdailyapple.com/whats-the-difference-between-primal-and-paleo/
http://savingdinner.com/paleo-primal-whats-difference/
http://healthyeating.sfgate.com/corn-okay-glutenfree-diet-1809.html
I hope she finds relief soon.
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