My son was diagnosed with Crohn's almost a month ago. He is 12 years old and was in the 3rd percentile for weight. Thought his issues were allergy related. My concern is diet and getting him off the predisone. I don't like what it's doing to his system. I am not sure if it's working although his pain has subsided. He is still having some bleeding. Just not sure where to start with all this other than reading a ton.
Son recently diagnosed
- Thread starter JacksMom
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Help Support Crohn's Disease Forum:
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Hi Jacksmom,
So sorry to hear that your son was diagnosed with Crohns.
It's overwhelming at the beginning but you're right to just start reading and asking questions. You've found a great place for answers! You'll find some very knowledgeable parents and members, always willing to share their experiences and offer support.
I strongly urge you to have a look at Enteral Nutrition!! It's a great treatment, has no side effects, provides bowel rest, all necessary nutrition, has anti-inflammatory and healing properties and has a success rate at inducing remission as steroids. EN can be used together with medications to supplement his nutrition or to help induce remission if, as you suggest, the pred isn't working. EN is commonly used around the world, often as the first line treatment to induce remission but, for some reason, is not as commonly used in the U.S. You may have to initiate the conversation with your son's GI re EN. I've added two links - one to Kids on EN (in the parents subforum) and to the Enteral Nutrition section under Treatment. EN was the treatment offered to my son to induce remission and has been his maintenance treatment since last year. He had lost approx. 25 lbs prior to diagnosis and, within 3 months, had gained 30 lbs. :thumright: There are a number of children here who have used EN and some who continue to use it as a supplemental treatment.
http://www.crohnsforum.com/showthread.php?t=36345
http://www.crohnsforum.com/forumdisplay.php?f=161
There is also a forum for Diet - please have a look through it. Like Crohns, itself, diet is very individual, however, there are some foods that seem to cause issues for many people - ie. dairy, gluten, high fibre. There are also some diets that seem to help many people - SCD, paleo, gluten-free. Diet hasn't been an issue for my son so I'm not able to offer you any real advice re the various diets.
I'm sure there will be other parents along soon with lots of advice and support!
I hope your son begins to feel better soon! :ghug:
So sorry to hear that your son was diagnosed with Crohns.
It's overwhelming at the beginning but you're right to just start reading and asking questions. You've found a great place for answers! You'll find some very knowledgeable parents and members, always willing to share their experiences and offer support.I strongly urge you to have a look at Enteral Nutrition!! It's a great treatment, has no side effects, provides bowel rest, all necessary nutrition, has anti-inflammatory and healing properties and has a success rate at inducing remission as steroids. EN can be used together with medications to supplement his nutrition or to help induce remission if, as you suggest, the pred isn't working. EN is commonly used around the world, often as the first line treatment to induce remission but, for some reason, is not as commonly used in the U.S. You may have to initiate the conversation with your son's GI re EN. I've added two links - one to Kids on EN (in the parents subforum) and to the Enteral Nutrition section under Treatment. EN was the treatment offered to my son to induce remission and has been his maintenance treatment since last year. He had lost approx. 25 lbs prior to diagnosis and, within 3 months, had gained 30 lbs. :thumright: There are a number of children here who have used EN and some who continue to use it as a supplemental treatment.
http://www.crohnsforum.com/showthread.php?t=36345
http://www.crohnsforum.com/forumdisplay.php?f=161
There is also a forum for Diet - please have a look through it. Like Crohns, itself, diet is very individual, however, there are some foods that seem to cause issues for many people - ie. dairy, gluten, high fibre. There are also some diets that seem to help many people - SCD, paleo, gluten-free. Diet hasn't been an issue for my son so I'm not able to offer you any real advice re the various diets.
I'm sure there will be other parents along soon with lots of advice and support!
I hope your son begins to feel better soon! :ghug:
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One thing to remember us the disease didn't start over night so it takes time to reduce the swelling and start the healing process.
My DS is 8. He was dx last sept at age 7. We have completed two rounds of pred but weren't aggressive enough in the beginning. We also tried en along with 6-mp instead of pred.
For us it did not put him in remission. Later we tried 6-mp + pred but at a lower dose to avoid issues. Still not good.
We switched to methotrexate and added pred as insurance while we waited for the Mtx to work . It wasn't enough so we are on Remicade now.
It takes a while to find the med that works enough for your kid.
We still have DS drink Peptamen jr (en) at half dose (3 cans) to help with any malabsorption issues. He has gained 20 lbs since feb. he had not gained any wait prior to that for 2 years .
I would call the doc if you don't feel it is working.
Just to get their feedback on timeframe.
My DS is 8. He was dx last sept at age 7. We have completed two rounds of pred but weren't aggressive enough in the beginning. We also tried en along with 6-mp instead of pred.
For us it did not put him in remission. Later we tried 6-mp + pred but at a lower dose to avoid issues. Still not good.
We switched to methotrexate and added pred as insurance while we waited for the Mtx to work . It wasn't enough so we are on Remicade now.
It takes a while to find the med that works enough for your kid.
We still have DS drink Peptamen jr (en) at half dose (3 cans) to help with any malabsorption issues. He has gained 20 lbs since feb. he had not gained any wait prior to that for 2 years .
I would call the doc if you don't feel it is working.
Just to get their feedback on timeframe.
My little penguin - is your son gaining weight in the right places? My son has gained 12 pounds in 3 weeks on the prednisone and it's in his face and middle. He is still only 10% percentile for weight, but it's distributing abnormally. Thank you so much for your help. A year ago he was diagnosed with unexplained arthritis and hand/foot/mouth which we now believe was a crohn's flare up. He was on anti-inflammatory then.
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Jacksmom, the prednisone makes you retain water, so it isn't true weight. It *can* help, though, while reducing inflammation is why we use pred it has a se of increased appetite, which may help.
This forum has been my sanity at times...glad that you found it and best of luck to you as you face these difficult decisions. My daughter also bled while on pred; it is great short term to try to get them under control but generally speaking it is nice to find another solution...while it was working for us I loved to hate pred.
This forum has been my sanity at times...glad that you found it and best of luck to you as you face these difficult decisions. My daughter also bled while on pred; it is great short term to try to get them under control but generally speaking it is nice to find another solution...while it was working for us I loved to hate pred.
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Hi jacks mum just wanted to say hi , my son has just been diagnosed a week today and I gotta say everyone has been full of help and advice, and ilove hearing of the positive post of kids doing well it gives me hope for all the bad times I've had with my Lewis, hopenu start on the road to recovery soon . I will leave the knowledgeable topics ton the long standing Crohn's mums ,xx
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Hi and welcome. Sorry to hear about your son - my son was 12 when diagnosed last year. Definately worth asking about the EN treatment, Andrew went straight onto that for 8 weeks exclusively (Modulen) through an NG tube because he couldn't stand the taste. It is our first treatment here, rather than give out pred. If your son is still having issues then it would definately be worth trying. Good luck
crohnsinct
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Hi Jacksmom, I am late to the party but wanted to welcome you. My daughter was not on the weight charts when she was first dx'ed. Prednisone (she didn't get puffy but did gain a good 10 pounds and never lost it), Remicade and 6 weeks of exclusive En and she hit the 10th percentile mark last week. I would definitely ask about the EN as a first line of treatment if you think he would go for it. Oh and prior to dx my daughter wore the same size shoes (kids size 3 1/2) for two years and barely grew. She has now grown 4 1/2" and wears a woman's size 7! Amazing what they can accomplish once they start absorbing their nutrition.
Good luck at your appointment!
Good luck at your appointment!
I am so happy to hear your daughter's shoe size grew. My 8 year old son wears the same size and we were starting to worry about that. Thank you so much for that message! FYI - we moved from Farmington CT last summer. He was being treated by an arthritis doctor when we left. How long was your daughter on prednisone? I am hoping he gets tapered down next week - has gained 12 pounds in a month.
crohnsinct
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Oh my gosh..hysterical. We also have an 8 year old who wore a larger shoe size and weighed more than O!
Wow! Our doc has an office in Farmington! O was inpatient at Connecticut Childrens and so we go back up there for infusions but appointments are mostly in Farmington and a satellite office here in Fairfield where the doc comes once or twice a month.
She was on Remicade and Prednisone at her highest dose for about three weeks then we tapered and the fun began. With each taper symptoms crept in so we went back up and slowed it down. She was finally off after about 3 months.
Yeah, you have to start getting him over to his maintenance med but be forewarned that some of them take a while to kick in so there may be some overlap of Prednisone and new med. You will get there! Sometimes two steps forward one back but eventually you will get there!
Wow! Our doc has an office in Farmington! O was inpatient at Connecticut Childrens and so we go back up there for infusions but appointments are mostly in Farmington and a satellite office here in Fairfield where the doc comes once or twice a month.
She was on Remicade and Prednisone at her highest dose for about three weeks then we tapered and the fun began. With each taper symptoms crept in so we went back up and slowed it down. She was finally off after about 3 months.
Yeah, you have to start getting him over to his maintenance med but be forewarned that some of them take a while to kick in so there may be some overlap of Prednisone and new med. You will get there! Sometimes two steps forward one back but eventually you will get there!
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Hi Jacksmom and welcome to the forum, I'm also a JacksMom, when my Jack was diagnosed he was also on the 3% body weight chart and gained about 12 pounds on the prednisone. He lost most of it again when he was weened off the prednisone. We still struggle with weight issues 3 years later he is only in the 7th percentile but he has grown several inches mostly in the last year.
We've tried the boost shakes, juice type drinks but we can't seem to get him to drink them regularly, it's like banging your head against a brick wall. He knows he needs more calories/nutrition but he is such a picky eater.
He has a GI appt in 2 weeks and we will definitely be talking about some other options to try and get some weight on him.
His pediatrician didn't seem too concerned in his words, "well, he is almost in the 10th percentile and we only worry about kids below the 10th percentile" Gee, I may not be very good at math but I'm pretty sure 7 is below 10. I think his GI may be a little more concerned.
We've tried the boost shakes, juice type drinks but we can't seem to get him to drink them regularly, it's like banging your head against a brick wall. He knows he needs more calories/nutrition but he is such a picky eater.
He has a GI appt in 2 weeks and we will definitely be talking about some other options to try and get some weight on him.
His pediatrician didn't seem too concerned in his words, "well, he is almost in the 10th percentile and we only worry about kids below the 10th percentile" Gee, I may not be very good at math but I'm pretty sure 7 is below 10. I think his GI may be a little more concerned.
DustyKat
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Hi JacksMom and :welcome:
I'm so sorry to hear about your boy...:hug:
You have been given fab advice hun so I can only add my support to looking into EN.
As to the rash, do you know what is causing it? Have you tried sitz baths and something like Calmospetine cream?
Dusty. xxx
I'm so sorry to hear about your boy...:hug:
You have been given fab advice hun so I can only add my support to looking into EN.
As to the rash, do you know what is causing it? Have you tried sitz baths and something like Calmospetine cream?
Dusty. xxx
