Hey! My son was just dx with Crohn's in Feb. 2013. He complained about he stomach hurting, had runny bowel movements, and lost a lot of weight (he was down to 47 lbs). He had colonscopy and endoscopy done and they confirmed he had Crohn's. He was on Predinose and now is just on the 6-MP medicine. He has recently had some blood work done and it appears that his inflammatory marker is still elevated which is concerning to his GI doctor. I am just worried that things are not getting in better for him. He says that his stomach is not hurting and is not having runny bowel movements. I just want him to feel better. I want him to know that there are other kids out there that are having to go through this as well so he doesn't feel that is he different.
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Hi PJcMom,
I'm Grace's mom. I'm sorry your son's labs are still off a bit. It can take awhile to get thing under control, even when they feel better, there could still be underline inflammation happening.
How old is your son and what meds do they have him on?
HUGS
I'm Grace's mom. I'm sorry your son's labs are still off a bit. It can take awhile to get thing under control, even when they feel better, there could still be underline inflammation happening.
How old is your son and what meds do they have him on?
HUGS
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Have you heard of EEN?
American GI's for some reason don't push this as much as other countries.
It's full liquid diet with special formulas that are designed to give the bowel rest and help bring the child/adult into remission.
My Grace is still doing this.
Is so nice to know that ALL their nutrients and calorie needs. It lets them gain weight also.
Studies have shown that EEN is as good at achieving remission as Prednisone is.
Press here for info on EEN.
How long has he been on 6mp?
Also, if you don't mind all the questions, where is his disease located?
American GI's for some reason don't push this as much as other countries.
It's full liquid diet with special formulas that are designed to give the bowel rest and help bring the child/adult into remission.
My Grace is still doing this.
Is so nice to know that ALL their nutrients and calorie needs. It lets them gain weight also.
Studies have shown that EEN is as good at achieving remission as Prednisone is.
Press here for info on EEN.
How long has he been on 6mp?
Also, if you don't mind all the questions, where is his disease located?
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- Jun 5, 2012
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- 4,014
Welcome PJsMom,
I'm Jack's mom, my son is 13 (14 next month) and was diagnosed at age 10. Farmwife has given some great advice already. Has he reached theraputic levels of 6MP, this would be tested with a blood test. My son was on Imuran for a few years and it took us about a year to get to theraputic levels. He felt much better before we got to that level but blood was still off until we got there. Once that happened he felt really well. One thing to keep in mind is everything didn't happen over night and as much as we want the medicines to work immediately it can take some time for the body to heal.
Ask for hard copies of all tests and keep them in a binder so you can compare and watch for trends (hopefully trending up
)
While my son has never done EEN (complete entrenal nutrition) he has been on supplemental since February and in our case it seems to be the missing piece of the puzzle to get him to remission. If I was able to go back I would have done EEN in the beginning.
There is a ton of information here and even more importantly support from those that have been there done that and parents to talk to who truly understand.
I'm Jack's mom, my son is 13 (14 next month) and was diagnosed at age 10. Farmwife has given some great advice already. Has he reached theraputic levels of 6MP, this would be tested with a blood test. My son was on Imuran for a few years and it took us about a year to get to theraputic levels. He felt much better before we got to that level but blood was still off until we got there. Once that happened he felt really well. One thing to keep in mind is everything didn't happen over night and as much as we want the medicines to work immediately it can take some time for the body to heal.
Ask for hard copies of all tests and keep them in a binder so you can compare and watch for trends (hopefully trending up
) While my son has never done EEN (complete entrenal nutrition) he has been on supplemental since February and in our case it seems to be the missing piece of the puzzle to get him to remission. If I was able to go back I would have done EEN in the beginning.
There is a ton of information here and even more importantly support from those that have been there done that and parents to talk to who truly understand.
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Welcome
DS is 9 as well
He was dx at age 7.
He was 49/50 lbs at dx .
He did try 6-mp in the beginning . For him it wasn't enough.
He is now on humira.
He also drinks peptamen jr everyday .
It helps him keep on weight and grow even when his disease is active .
Your GI can prescribe it. Some insurances cover it through the durable medical equipment.
You can also order it on your own from nestle.
http://www.nestlenutritionstore.com...on?rank=6&v1=rank&asc=1&catpath=pediatric.2.2
He did 9 weeks of EEN ( no food) and has been on en ( with food )
Ever since.
He gained over 24 lbs while on peptamen jr with food and grew 4 inches.
The beginning is hard .
But the folks here help alot
Has he had any imaging done ?
MRI / pill cam ?
Good luck.
DS is 9 as well
He was dx at age 7.
He was 49/50 lbs at dx .
He did try 6-mp in the beginning . For him it wasn't enough.
He is now on humira.
He also drinks peptamen jr everyday .
It helps him keep on weight and grow even when his disease is active .
Your GI can prescribe it. Some insurances cover it through the durable medical equipment.
You can also order it on your own from nestle.
http://www.nestlenutritionstore.com...on?rank=6&v1=rank&asc=1&catpath=pediatric.2.2
He did 9 weeks of EEN ( no food) and has been on en ( with food )
Ever since.
He gained over 24 lbs while on peptamen jr with food and grew 4 inches.
The beginning is hard .
But the folks here help alot
Has he had any imaging done ?
MRI / pill cam ?
Good luck.
He has been on 6-mp since April. It is located in his large and small intestines.
I have never heard of EEN. That may be something I mention to his doctor. I am just so overwhelmed with all of this. He has not had any imgaing done. What would that show? Have y'all found any foods that you would recommend to stay away from?
I have never heard of EEN. That may be something I mention to his doctor. I am just so overwhelmed with all of this. He has not had any imgaing done. What would that show? Have y'all found any foods that you would recommend to stay away from?
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- Apr 15, 2012
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http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf
Read that one on EEN
Lots of papers here
http://www.crohnsforum.com/showthread.php?t=43002
Imagining can tell how much of the s all intestine is involved and as well as any thickening.
DS had multiple images done within two weeks of dx.
They are really std since you can't see these areas during a scope.
6-mp takes 3-6 months to be effective .
Nothing is fast in Gi land
Read that one on EEN
Lots of papers here
http://www.crohnsforum.com/showthread.php?t=43002
Imagining can tell how much of the s all intestine is involved and as well as any thickening.
DS had multiple images done within two weeks of dx.
They are really std since you can't see these areas during a scope.
6-mp takes 3-6 months to be effective .
Nothing is fast in Gi land
CarolinAlaska
Holding It Together
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- Jan 24, 2013
- Messages
- 2,525
Our daughter was diagnosed in January. She had 8 weeks of EEN (drinking at first, then NG tube for 5 weeks). Now she is on 6MP and drinking a mixture of formulas. She just had blood work and her inflammatory markers were up a little. She hadn't had any elevation in the past 6 months, so naturally the docs are concerned. Not sure what is next. We see the GI doc this week.
DustyKat
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Hi PJsMom and :welcome:
I am so sorry to hear about your boy, Mum. :hug:
You have already been wonderful advice so there is not a lot I can add except to welcome you and let you know that you among friends here and we will help you any way we can.
As has been said, EN is worth looking into as either an exclusive front line treatment or as a supplement. It isn't an easy method but a well worthwhile one and can also be used to pull things back into line without having to make huge adjustments to an existing medication regime.
As mlp stated, 6MP will take at least 3 months to become fully therapeutic and for some that does stretch out to 6 months.
When there is small bowel disease some form of imaging is always useful as a way of gauging the amount and extent of disease present. Scopes will only reach as far as the duodenum for an endoscope and just into the ileum for a colonoscopy. The small bowel can be long as 7 metres so that leaves a lot of uncharted territory. It also then serves as a baseline when making comparisons at a later date.
It can be very hard to remember things when you live this day in and day out and what once was abnormal starts to become normal. If you have any concerns that things may not be right Mum maybe start a diary so you track any symptoms and progress. You might to have a look at the suggestions we have in the wiki:
http://www.crohnsforum.com/wiki/Diary-Inclusions
...it just may help you and the doctor pull things into place.
And lastly as Jm has suggested, ask for copies of all tests that conducted whether they be blood, imaging and so on. This will be another way you can stay on top of things and in control.
Good luck hun, I hope all goes with your boy and welcome aboard!
Dusty. xxx
I am so sorry to hear about your boy, Mum. :hug:
You have already been wonderful advice so there is not a lot I can add except to welcome you and let you know that you among friends here and we will help you any way we can.
As has been said, EN is worth looking into as either an exclusive front line treatment or as a supplement. It isn't an easy method but a well worthwhile one and can also be used to pull things back into line without having to make huge adjustments to an existing medication regime.
As mlp stated, 6MP will take at least 3 months to become fully therapeutic and for some that does stretch out to 6 months.
When there is small bowel disease some form of imaging is always useful as a way of gauging the amount and extent of disease present. Scopes will only reach as far as the duodenum for an endoscope and just into the ileum for a colonoscopy. The small bowel can be long as 7 metres so that leaves a lot of uncharted territory. It also then serves as a baseline when making comparisons at a later date.
It can be very hard to remember things when you live this day in and day out and what once was abnormal starts to become normal. If you have any concerns that things may not be right Mum maybe start a diary so you track any symptoms and progress. You might to have a look at the suggestions we have in the wiki:
http://www.crohnsforum.com/wiki/Diary-Inclusions
...it just may help you and the doctor pull things into place.
And lastly as Jm has suggested, ask for copies of all tests that conducted whether they be blood, imaging and so on. This will be another way you can stay on top of things and in control.
Good luck hun, I hope all goes with your boy and welcome aboard!
Dusty. xxx
Welcome Mom! Where is your GI located? I think most of the larger hospitals will have online resources for you as far as retaining all records. Is he/she a dedicated pediatric GI? I would be surprised if they didn't at least request an MRI.
Good luck
Good luck
