-
Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
Sibling being evaluated
- Thread starter crohnsinct
- Start date
crohnsinct
Well-known member
^^ YES! I looked further and saw that...all is right with my world. Only 2 tbsp. of ricotta though...that doesn't make many raviolis:ylol:
I am intrigued by this eating plan and will be researching it obsessively and maybe start a thread for our journey. Seems it is a good option for my diabetic also. Not so much for O. I will have to sneak her avocados on the side.
I am intrigued by this eating plan and will be researching it obsessively and maybe start a thread for our journey. Seems it is a good option for my diabetic also. Not so much for O. I will have to sneak her avocados on the side.
Glad to hear the initial drinking went well. I will be looking for that new thread!
Neocate is horrid
Peptamenjr is bad but tolerable my tongue just revolted from the aftertaste
Boost kids is like dessert
From what I tasted
Glad she is able to handle it
Peptamenjr is bad but tolerable my tongue just revolted from the aftertaste
Boost kids is like dessert
From what I tasted
Glad she is able to handle it
crohnsinct
Well-known member
Yeah…I remember you saying to give them the horrid ones first and then suddenly the Boost and Ensure doesn't taste that bad:ylol: Tricks of the trade!
:lol: not a comparison that would quickly come to mind for us northern folk! :ylol::ylol:
I suppose we would poke at a polar bear!
CarolinAlaska
Holding It Together
J drank okay for about 3 weeks until the ensure started having bad side effects. Moving to Peptamen Jr was not working and so she had to go to NG tube, but has never managed to insert one without sedation. I hope T's experience finishes without one.
crohnsinct
Well-known member
Hey girl! Glad to have you back although I am seriously hoping it is just to say hi and not because things aren't going well.
Glad to see you stopped by to say hi !!!
crohnsinct
Well-known member
We had T's first follow up appointment today and the GI came in absolutely giddy with excitement. The EEN worked! At 4 weeks we pulled a Fecal Calprotectin test and she is at 51! Totally and completely normal! He said it is a hard therapy and it would suck if it didn't work but that he was over the moon that it has. Granted she is also on Mtx but it is too early for the mtx to have had any affect.
So the plan now is to reintro food and he said this is where science turns to art. We are going to try a slow reintro of calories rather than specific foods. So, we are going 20% of calories from food. So 8 cans a day and 500 calories of food. The food can be anything she wants as long as it
- is NOT meat
- is not high fat dairy
- is not processed
- is not high in saturated fat
So basically our normal diet anyway and 500 calories of that stuff is a lot of food.
Each week or so we will add more calorie of food and reduce formula.
When she is on 100% food, he will allow meat once a week and a treat here or there.
The big news is the long term plan may be to drop mtx and cycle between EEN and food to manage the disease. When on food stick with the ultra clean diet. Monitor with frequent FC tests.
This does however become a quality of life issue for T and while she wasn't adverse to doing this today, she may feel differently once she is on 100% food. So we are not going to ask her for her decision until she has been 100% on food for a few weeks and we are sure the FC numbers haven't crept up.
I do hate the ingredients in the formulas but I hate them less than I hate Mtx....for me it comes down to the lesser of two evils. I understand it will be an incredibly mature decision to ask of an 11 year old and I will try not to sway her but I do hope she decides to give it a go.
So all in all an excellent appointment and I am ridiculously proud of T for sticking with it and for agreeing to the diet going forward.
P.S..he did say not an option for O. He doesn't want to drop Remicade...too risky.
So the plan now is to reintro food and he said this is where science turns to art. We are going to try a slow reintro of calories rather than specific foods. So, we are going 20% of calories from food. So 8 cans a day and 500 calories of food. The food can be anything she wants as long as it
- is NOT meat
- is not high fat dairy
- is not processed
- is not high in saturated fat
So basically our normal diet anyway and 500 calories of that stuff is a lot of food.
Each week or so we will add more calorie of food and reduce formula.
When she is on 100% food, he will allow meat once a week and a treat here or there.
The big news is the long term plan may be to drop mtx and cycle between EEN and food to manage the disease. When on food stick with the ultra clean diet. Monitor with frequent FC tests.
This does however become a quality of life issue for T and while she wasn't adverse to doing this today, she may feel differently once she is on 100% food. So we are not going to ask her for her decision until she has been 100% on food for a few weeks and we are sure the FC numbers haven't crept up.
I do hate the ingredients in the formulas but I hate them less than I hate Mtx....for me it comes down to the lesser of two evils. I understand it will be an incredibly mature decision to ask of an 11 year old and I will try not to sway her but I do hope she decides to give it a go.
So all in all an excellent appointment and I am ridiculously proud of T for sticking with it and for agreeing to the diet going forward.
P.S..he did say not an option for O. He doesn't want to drop Remicade...too risky.
Last edited:
crohnsinct
Well-known member
Haha Pilgrim..the system kicked me off. See edit above.
Great news !
crohnsinct
Well-known member
Well she came home from school and tried to get her 500 calories in and couldn't believe how much food there was! She was helping me make dinner, singing and cleaning. She is sooooo happy!
At dinner she said if the cycling thing could be 80/20 then full food or even 90/10 then full food she would do it. I know in the book Beat Crohn's they say you could do it with those percentages, I am just not sure if our doc would go for it. But you know me...I will ask!
He mentioned two months on two months off...seems a bit extreme to me considering she got to 51 with only 4 weeks but I guess he is the one with the degree and experience. But I have google and a committee! :ycool:
At dinner she said if the cycling thing could be 80/20 then full food or even 90/10 then full food she would do it. I know in the book Beat Crohn's they say you could do it with those percentages, I am just not sure if our doc would go for it. But you know me...I will ask!
He mentioned two months on two months off...seems a bit extreme to me considering she got to 51 with only 4 weeks but I guess he is the one with the degree and experience. But I have google and a committee! :ycool:
crohnsinct
Well-known member
Maya...is that their maintenance therapy or just what they use to induce remission. Either way I think cycling 90/10 then food would work.
Of course all this depends on her FC staying low while we introduce food. But she is also on Mtx so if the FC stays low, we won't really know until we try. If FC raises then it is completely off the table.
Off to google....
Of course all this depends on her FC staying low while we introduce food. But she is also on Mtx so if the FC stays low, we won't really know until we try. If FC raises then it is completely off the table.
Off to google....
To induce remission I believe: http://www.ncbi.nlm.nih.gov/pubmed/23567777
Standard course is two months on and two off
Pilgrim tried it with her DD
Didn't work
Pilgrim tried it with her DD
Didn't work
Awesome to hear!!!!
crohnsinct
Well-known member
They want us to stay as far away from saturated fat as possible. I also think because if you take the meat away you have to replace it with something, right? So more veggies, fruits, beans etc. They quoted a study out of Japan that hasn't been published yet but promised to give me a copy. Something about people maintaining remission longer the less saturated fat and meat products they had. The threshold of acceptance was once a week. I will let you all know more once I get my hands on that study. There is also a study coming out of Israel with similar findings but they didn't get much of the specifics of the diet yet.
Crohnsinstinct,
You can google and see the Japanese study. I saw it a few months ago. Tried to convince my daughter. Unfortunately she is a carnivore like her Dad and doesn't want to give it up. Maybe I will try to convince her again when the second study comes out.
You can google and see the Japanese study. I saw it a few months ago. Tried to convince my daughter. Unfortunately she is a carnivore like her Dad and doesn't want to give it up. Maybe I will try to convince her again when the second study comes out.
crohnsinct
Well-known member
Weird...I wonder why they told me it wasn't published. Maybe I am confusing it with another...or maybe there was a second study. Going to google it now.
My son is doing cycling, but the dr. has given us little guidance. He said that my son could do 90/10 but it reality it is more like 80/20, as my son eats a little too much. The nutritionist (who was admittedly clueless about cycling) said the my son didn't need to transition, but could jump directly from 90/10 Peptamen to 100% food all at once. Abrupt changes aren't normally good for anyone's stomach, let alone someone with Crohn's.
Last edited:
http://www.naspghan.org/files/docum...nteral_Nutrition_for_the_Control_of.29[1].pdf
Pen is listed including Japan study
Pen is listed including Japan study
I really don't know how to read the studies. My son has done about 5 weeks of EEN but with 10 to 20% food. He's been feeling GOOD. A lot better than when he was on MTX. His only problem is that it hurts him to have a b.m. (sort of burns) which started a couple of months ago, but isn't getting any worse. I've told the nurse (rarely get to speak to the dr.) several times, but she doesn't act concerned at all. (Or even interested). I plan to have my son do the EEN for another week and then go to 50% food for a month and see how that works.
crohnsinct
Well-known member
O.K. I got my grubby little hands on that "to be published" article. It wasn't the Japan study but rather one that will be published in Gastroenterology soon. Robert Baldassano is one of the authors. "Diet in the Pathogenesis and Treatment of IBD." A few other familiar names but I mention Baldassano specifically because of a presentation MLP posted in another thread.
The nutritionist and I talked more at the center's symposium on Saturday. She really feels stongly that there is enough evidence these days to support us trying a 50/50 approach.
T is on 80/20 right now and will stay there until her follow up fc test at 8 weeks after the last one. If still low, we will add more food. Then retest in 8 weeks then add more food and so on until we reach the 50/50 threshold. At that point, we will decide if it is something T would like to continue and whether or not the GI feels we could trial the 50/50 with dropping mtx.
I think some of the GI's reluctance has to do with compliancy with the diet portion (see restrictions above). It seems, the success at 50/50 really has a lot to do with "what" you are eating. If kids are not compliant with drugs you can only imagine how much lower compliancy rates might be with diet. I am already seeing some of the struggle. Both to avoid the "bad" foods and also to calculate and make adjustments in calories and food for lower EN intake etc.
So we will see in about 4 months which way we will go. But honestly, I don't see the harm in trying as long as we continue to monitor as we can always add mtx back in. I wouldn't pull O off Remicade to try this only because of the potential difficulty of going back on should it fail. But maybe the diet we are on has something to do with her good results???
The nutritionist and I talked more at the center's symposium on Saturday. She really feels stongly that there is enough evidence these days to support us trying a 50/50 approach.
T is on 80/20 right now and will stay there until her follow up fc test at 8 weeks after the last one. If still low, we will add more food. Then retest in 8 weeks then add more food and so on until we reach the 50/50 threshold. At that point, we will decide if it is something T would like to continue and whether or not the GI feels we could trial the 50/50 with dropping mtx.
I think some of the GI's reluctance has to do with compliancy with the diet portion (see restrictions above). It seems, the success at 50/50 really has a lot to do with "what" you are eating. If kids are not compliant with drugs you can only imagine how much lower compliancy rates might be with diet. I am already seeing some of the struggle. Both to avoid the "bad" foods and also to calculate and make adjustments in calories and food for lower EN intake etc.
So we will see in about 4 months which way we will go. But honestly, I don't see the harm in trying as long as we continue to monitor as we can always add mtx back in. I wouldn't pull O off Remicade to try this only because of the potential difficulty of going back on should it fail. But maybe the diet we are on has something to do with her good results???
That is so awesome. I hope things continue to improve! C really didn't mind the supplemental EN and at its highest he was getting 2700 calories of formula plus food. Since our experience was for weight gain I have nothing to add about using as treatment option, other than CHOP had our IBD nutritionist all excited about it as treatment when C's group went to the symposium.
I think it's a great thing to try.
Yes, we did try cycling exclusive EN (6 week cycles) with 50% EN (no special diet for the food however most of our food is home cooked unprocessed). We also tried 6 weeks exclusive cycling into a 100% SCD. Both failed for our daughter. That said, we are using 50% supplemental EN with Humira. It helps the growth right now, and some studies suggest that it may make the biologic more effective (that was a Remi study but I'm extrapolating). I guess I have no way of being sure if it is the Humira or the supplemental EN that has her feeling so awesome right now, but looking at our past experience probably more the Humira.
I hope you are on to something good, CIC. What I've heard from doctors is that your diet can make you feel better or worse in general but doesn't affect the disease. So, if your doctor is suggesting it might control Crohn's (along with partial EN), then that is VERY exciting.
I hope she is on the road to med free health! Wouldn't that be amazing?!
Yes, we did try cycling exclusive EN (6 week cycles) with 50% EN (no special diet for the food however most of our food is home cooked unprocessed). We also tried 6 weeks exclusive cycling into a 100% SCD. Both failed for our daughter. That said, we are using 50% supplemental EN with Humira. It helps the growth right now, and some studies suggest that it may make the biologic more effective (that was a Remi study but I'm extrapolating). I guess I have no way of being sure if it is the Humira or the supplemental EN that has her feeling so awesome right now, but looking at our past experience probably more the Humira.
I hope you are on to something good, CIC. What I've heard from doctors is that your diet can make you feel better or worse in general but doesn't affect the disease. So, if your doctor is suggesting it might control Crohn's (along with partial EN), then that is VERY exciting.
I hope she is on the road to med free health! Wouldn't that be amazing?!
crohnsinct
Well-known member
Yeah, our nutritionist is pretty excited also and said they are all biting at the bit to find a candidate to try it with. I guess T is a good one given she has relatively mild disease and responded so well to the exclusive period. Plus I am a nutrition freak and they figure I will keep strict on the diet...they figure wrong. Last night the beet loaf didn't get into the oven. I got home from swimming at 9, starving and tired. We had white flour pizza. T had a slice...so 3 offenses...went over in her food calories, cheese, and white flour. But they are giving us 8 weeks to see if we could do it. So I will call last night part of the learning curve.
I was going to mention the same study as Pilgrim... that a Japanese study showed supplemental EN increased remicade's long term success. I don't recall if there was any mention of diet but do remember the greatest success came when supplemental EN was at 1200 cal/day. I also believe they found no difference in type of formula (ie elemental, semi, etc.).
S didn't have a problem with the supplemental EN he did for two years - luckily, he didn't find the ng tube to be a problem, so running the formula overnight didn't affect him during the day. However, he didn't want to do it when he went to university and, with his GI saying it wasn't necessary, it was an impossible sell! :ymad: But, he did agree to drink a couple of Boost shakes per day. I do think they've helped... whether they've helped his crohns directly, I don't know, however, I do believe all the supplemental EN has kept his body healthy and this has helped overall.
S didn't have a problem with the supplemental EN he did for two years - luckily, he didn't find the ng tube to be a problem, so running the formula overnight didn't affect him during the day. However, he didn't want to do it when he went to university and, with his GI saying it wasn't necessary, it was an impossible sell! :ymad: But, he did agree to drink a couple of Boost shakes per day. I do think they've helped... whether they've helped his crohns directly, I don't know, however, I do believe all the supplemental EN has kept his body healthy and this has helped overall.
crohnsinct
Well-known member
Pilgrim: Supplemental EN is a great thing. The studies I have read say it can extend the amount of time your child stays in remission so stick with it! Sadly, our doc told us we could drop it at some point and then O wanted nothing to do with it again. Even says if she flares she wants the prednisone rather than EEN. Hopefully we won't have to jump off that bridge.
The studies on diet with EN to control disease are VERY encouraging. The problem is, each person will need a highly individualized diet. Much like there is no one med that works for all patients but diet will is even more variable. A lot of the research is being focused on identifying all the different types of disease and then will focus on some typical diets. It will be a long time coming but I think in our kids' lifetime it will be here.
So we are going to try the one that has had the best results in Isreal and Japan. It is basically how we eat but when you use it as a treatment for a disease there is much less room for cheating. So no cupcakes at birthday parties, or the pizza for that matter as it will most likely be made with white flour etc. I know plenty of parents with kids with severe food allergies are used to this lifestyle so probably just a learning curve for the two of us.
The studies on diet with EN to control disease are VERY encouraging. The problem is, each person will need a highly individualized diet. Much like there is no one med that works for all patients but diet will is even more variable. A lot of the research is being focused on identifying all the different types of disease and then will focus on some typical diets. It will be a long time coming but I think in our kids' lifetime it will be here.
So we are going to try the one that has had the best results in Isreal and Japan. It is basically how we eat but when you use it as a treatment for a disease there is much less room for cheating. So no cupcakes at birthday parties, or the pizza for that matter as it will most likely be made with white flour etc. I know plenty of parents with kids with severe food allergies are used to this lifestyle so probably just a learning curve for the two of us.
Can you link or list the details of the diet? Our GI is talking about adding MTX to the Humira if her F. Cals are still high (we'll know next week) but I would love to try what you are trying there if we can get details. Maybe hold him off on adding another med to her little body for now.
I need specifics!!!
I need specifics!!!
crohnsinct
Well-known member
Well, we did add the mtx to O's Remicade and I could swear I have read studies that say that increases the length of time the biologics work so there may be an argument for adding it.
So basically it is the same diet we used with O. An anti inflammatory plant based diet. He has mentioned if the mtx was just for her Crohns he would entertain dropping it and letting diet handle things with the Remicade but she takes it for psoriasis and psoriatic arthritis and the diet has done nothing to clear up the psoriasis.
So for treatment of IBD just more strict than we are currently doing...so:
no added sugar - fruit is o.k.
no processed food - if it has a label don't eat it
meat once a week - this includes fish, poultry and beef. NO PORK.
no refined flour - whole grain only
limit high fat dairy - use cheese as a condiment
no refined oils - use olive and coconut oil
limit saturated fat - which if you do the above you will
At this point she is allowed a cheat" food once a week. She brought 16 pretzels to school and that was it for the week...well...until slacker mom served pizza last night.
This way of eating won't hurt anyone so there is no harm in trying. But like I said, diet is very individual so what worked for O may not work for T or anyone else. We are basically an experiment at this point and still not dropping Mtx so really won't know until we get to that point if it is working.
They are not huge fans of SCD with regard to treating inflammation. Yes for symptoms though. There was some talk of Fodmop but to many exclusions of food we eat regularly. Also mentioned, there may be some merit with gluten free but we aren't trying that yet.
So basically it is the same diet we used with O. An anti inflammatory plant based diet. He has mentioned if the mtx was just for her Crohns he would entertain dropping it and letting diet handle things with the Remicade but she takes it for psoriasis and psoriatic arthritis and the diet has done nothing to clear up the psoriasis.
So for treatment of IBD just more strict than we are currently doing...so:
no added sugar - fruit is o.k.
no processed food - if it has a label don't eat it
meat once a week - this includes fish, poultry and beef. NO PORK.
no refined flour - whole grain only
limit high fat dairy - use cheese as a condiment
no refined oils - use olive and coconut oil
limit saturated fat - which if you do the above you will
At this point she is allowed a cheat" food once a week. She brought 16 pretzels to school and that was it for the week...well...until slacker mom served pizza last night.
This way of eating won't hurt anyone so there is no harm in trying. But like I said, diet is very individual so what worked for O may not work for T or anyone else. We are basically an experiment at this point and still not dropping Mtx so really won't know until we get to that point if it is working.
They are not huge fans of SCD with regard to treating inflammation. Yes for symptoms though. There was some talk of Fodmop but to many exclusions of food we eat regularly. Also mentioned, there may be some merit with gluten free but we aren't trying that yet.
Thanks so much, that helps.
Could you make something like a whole grain muffin and use honey for baking? Or no honey either?
I'm not a huge fan of SCD either after our experiment. But like you say, results can be very individual. I personally theorize that it is more effective in UC. We tried gluten free before diagnosis thinking that maybe Celiac was the problem. Didn't work for us at all, but I notice that she does prefer to keep the bread products to a minimum. So, we could do a low-gluten thing.
Looking at your list we could make changes with the meat (regular meats here) and cheese. I think cheese was literally her first word! And no pork specifically - that is interesting. I wonder whats the difference between pork and beef health wise.
Thanks also for MTX perspective. I am really looking forward to your updates on the diet.
Could you make something like a whole grain muffin and use honey for baking? Or no honey either?
I'm not a huge fan of SCD either after our experiment. But like you say, results can be very individual. I personally theorize that it is more effective in UC. We tried gluten free before diagnosis thinking that maybe Celiac was the problem. Didn't work for us at all, but I notice that she does prefer to keep the bread products to a minimum. So, we could do a low-gluten thing.
Looking at your list we could make changes with the meat (regular meats here) and cheese. I think cheese was literally her first word! And no pork specifically - that is interesting. I wonder whats the difference between pork and beef health wise.
Thanks also for MTX perspective. I am really looking forward to your updates on the diet.
crohnsinct
Well-known member
We do very, very little fluid milk. We use Hemp milk or Almond milk. We make our own hemp milk. I usually buy the almond milk and have only found one brand that is organic and does not contain carrageenan but it has a label so we are moving to making own in the Vitamix. It is supposedly easy.
Eggs are a go for now but down the road may be asked to experiment with including that in our once a week "meat". Fish is part of the once a week "meat".
Cheese! I know! We are cheese hounds here. She said lower milk fat content cheese would be o.k....don't ask me, I haven't really dove into that yet.
Prepare ahead? Haha, you don't know me very well! Good thing I gave up procrastination for Lent! Thinking back to last night, I could have easily sautéed up some spinach and chopped onion and done an egg dish... I wasn't thinking. I get like that when I am beyond starving and tired. Better luck next time!
Honey and baking...Well, they are not keen on adding sugar and yes while honey is clean it is added sugar. BUT, you could bake a whole grain muffin with honey and call that your treat for the week. But really, when you divide the honey content across 12 muffins how much is really in each? Maybe one a day wouldn't hurt.
I think the hypothesis here is the big offenders are the processed foods and the animal saturated fat. Thus the reduction in cheese and meats. The absolute limit on pork has more to do with the quality of the pork supply in the country and probably higher fat content. Not really sure. We aren't huge pork people (except for bacon which we have now only have at holiday breakfasts - we used to eat it every week) so I didn't ask.
Eggs are a go for now but down the road may be asked to experiment with including that in our once a week "meat". Fish is part of the once a week "meat".
Cheese! I know! We are cheese hounds here. She said lower milk fat content cheese would be o.k....don't ask me, I haven't really dove into that yet.
Prepare ahead? Haha, you don't know me very well! Good thing I gave up procrastination for Lent! Thinking back to last night, I could have easily sautéed up some spinach and chopped onion and done an egg dish... I wasn't thinking. I get like that when I am beyond starving and tired. Better luck next time!
Honey and baking...Well, they are not keen on adding sugar and yes while honey is clean it is added sugar. BUT, you could bake a whole grain muffin with honey and call that your treat for the week. But really, when you divide the honey content across 12 muffins how much is really in each? Maybe one a day wouldn't hurt.
I think the hypothesis here is the big offenders are the processed foods and the animal saturated fat. Thus the reduction in cheese and meats. The absolute limit on pork has more to do with the quality of the pork supply in the country and probably higher fat content. Not really sure. We aren't huge pork people (except for bacon which we have now only have at holiday breakfasts - we used to eat it every week) so I didn't ask.
crohnsinct
Well-known member
FW - Well since they really only have good research studies on EEN for now I can only talk about that. No! They have no idea why it works, how it works, or why it doesn't. There are a lot of theories. That is a lot of what this "to be published" study talks about.
One theory...bowel rest. Well then why doesn't a 100% juicing diet yield the same results? And so on....
However, the fact that it does have a good success rate does point these researchers toward considering there is some sort of diet component. What exactly that is and the different types will probably come years down the road. But there are also so many other factors...acronym G.E.M. (Genetics, Environment and Microbiome)
So EEN has much lower success in UC so maybe disease location? Type of formula could matter for some patients. Exclusive or limited "other" foods allowed seems to affect some outcomes. Adherence to the diet. Length of time.
One theory...bowel rest. Well then why doesn't a 100% juicing diet yield the same results? And so on....
However, the fact that it does have a good success rate does point these researchers toward considering there is some sort of diet component. What exactly that is and the different types will probably come years down the road. But there are also so many other factors...acronym G.E.M. (Genetics, Environment and Microbiome)
So EEN has much lower success in UC so maybe disease location? Type of formula could matter for some patients. Exclusive or limited "other" foods allowed seems to affect some outcomes. Adherence to the diet. Length of time.
crohnsinct
Well-known member
Add to that the quoted success rate at inducing remission of 85% (pediatric)...but inflammation will return 100% of the time when food is added. We have to figure out the exact balance that will work. All while protecting the kids from the risk of increased inflammation. Balancing act.
We have been to CHOP and they LOVE EN. They really push even supplemental EN. We didn't talk about cycling EN and doing that diet because there is no way that my stubborn teenager would even consider it, but they did say even supplemental EN makes a big difference. The doctor whose presentation MLP put up (Dr. Baldassano) is at CHOP.
M is still trying supplemental EN though has been diagnosed with gastroparesis which is making things difficult. That said, she has been doing it for months - and between that, Remicade and Imuran (a low dose) recent tests looked perfect!
If she only had IBD I would really push her to try cycling EN and diet but the arthritis complicates things.
Crohnsinct - there is a new medication for psoriasis - Otezla, not sure that would be an option for O. It's also been approved for psoriatic arthritis (but again, not sure it's approved for kids). There are also some people on this psoriatic arthritis and psoriasis forum who swear by diet for their psoriasis. The Inspire forum. Might be worth looking at.
M is still trying supplemental EN though has been diagnosed with gastroparesis which is making things difficult. That said, she has been doing it for months - and between that, Remicade and Imuran (a low dose) recent tests looked perfect!
If she only had IBD I would really push her to try cycling EN and diet but the arthritis complicates things.
Crohnsinct - there is a new medication for psoriasis - Otezla, not sure that would be an option for O. It's also been approved for psoriatic arthritis (but again, not sure it's approved for kids). There are also some people on this psoriatic arthritis and psoriasis forum who swear by diet for their psoriasis. The Inspire forum. Might be worth looking at.
crohnsinct
Well-known member
Thanks Maya. Good point on the multiple dx's and diet and EEN. Maybe that is another reason he wouldn't try it with O. But the diet couldn't hurt from an anti inflammatory point of view but once they go to college I know all bets are off.
Haven't heard of the new drug. Will definitely be asking about it.
I have been on Inspire and other psoriasis forums and tried diet with O and it didn't work. I think the problem for her is, it isn't natural psoriasis but rather drug induced (Remi). So if the drug is the cause as long as she is taking it, we are stuck with psoriasis and psa. EGH!
Wanted to add for everyone that the we are considering diet and EEN for T because she is already at her adult height and done growing and has mild disease. So the risks are a little lower for her than say a child with severe disease who is still growing. Plus the med we would be withdrawing is Mtx and it is relatively easy to add it back in if we find the EEN/Diet approach doesn't work.
Haven't heard of the new drug. Will definitely be asking about it.
I have been on Inspire and other psoriasis forums and tried diet with O and it didn't work. I think the problem for her is, it isn't natural psoriasis but rather drug induced (Remi). So if the drug is the cause as long as she is taking it, we are stuck with psoriasis and psa. EGH!
Wanted to add for everyone that the we are considering diet and EEN for T because she is already at her adult height and done growing and has mild disease. So the risks are a little lower for her than say a child with severe disease who is still growing. Plus the med we would be withdrawing is Mtx and it is relatively easy to add it back in if we find the EEN/Diet approach doesn't work.
crohnsinct
Well-known member
haha...Sort of. Some one sent me a link to a newspaper that reported on it. Nice to have the Medscape article though. Thanks!
Sadly, it doesn't surprise me.
Sadly, it doesn't surprise me.
The nutritionist said my son could go straight to 100% food from 90% Peptamen, but I pulled 50% out of my derriere because it seemed safer, which my son started today. No special diet, but a healthy one with lots of fresh veggies, fruits, and scrambled eggs. Everything organic. He's so happy (today).
If he starts to feel bad at all, he will go right back to 100% Peptamen.
If all is going well, he will go back to 90% Peptamen on April 15th for another 30 days.
That's our plan.
He's been feeling so much better since he stopped the MTX. I really hope this works!
If he starts to feel bad at all, he will go right back to 100% Peptamen.
If all is going well, he will go back to 90% Peptamen on April 15th for another 30 days.
That's our plan.
He's been feeling so much better since he stopped the MTX. I really hope this works!
CarolinAlaska
Holding It Together
Great!
crohnsinct
Well-known member
Hi Committee!
Got the word from the doc that after doing 4 weeks of 80/20 we can now move to 50/50 but we are also bringing her calories down to 2,000 because she has gained a bit of weight and was a fine weight to start with.
I have to be honest, I don't think we have done a great job at keeping her at 500 calories. The nutritionist and doc said that didn't matter as long as she was still drinking 8 cans which she was. We also have not done a great job at keeping it clean...lots of distractions, trips etc. Again, doc and nutritionist felt this was fine but really would like us to get back on track if we are going to try to pull her off mtx and try diet and EEN alone.
So tomorrow we recommit!
Next FC test is 4/16. So we will have more info then. Next GI appointment is 6/2 so plenty of time before we have to make any decisions.
Fingers crossed we could get back on track. Glad she is on mtx as a safety net anyway.
Got the word from the doc that after doing 4 weeks of 80/20 we can now move to 50/50 but we are also bringing her calories down to 2,000 because she has gained a bit of weight and was a fine weight to start with.
I have to be honest, I don't think we have done a great job at keeping her at 500 calories. The nutritionist and doc said that didn't matter as long as she was still drinking 8 cans which she was. We also have not done a great job at keeping it clean...lots of distractions, trips etc. Again, doc and nutritionist felt this was fine but really would like us to get back on track if we are going to try to pull her off mtx and try diet and EEN alone.
So tomorrow we recommit!
Next FC test is 4/16. So we will have more info then. Next GI appointment is 6/2 so plenty of time before we have to make any decisions.
Fingers crossed we could get back on track. Glad she is on mtx as a safety net anyway.
Have you notified the GI?
CarolinAlaska
Holding It Together
From my experience, I'd jump on the Remicade train. The sooner the better.
crohnsinct
Well-known member
IMHO I would also opt for some sort of meds. Many, many times with EEN it only works while you are on it and once food is introduced it is just a matter of time before symptoms return plus it is simmering until visable symptoms and you don't want that.
FWIW our GI is loathe to manage disease with diet and EEN and will only try it with T if we can keep to the diet I outlined earlier. It is a hard and I would say especially for a teen boy getting ready to go off to school or a career soon.
FWIW our GI is loathe to manage disease with diet and EEN and will only try it with T if we can keep to the diet I outlined earlier. It is a hard and I would say especially for a teen boy getting ready to go off to school or a career soon.
We have no problem adhering any diet, but my son's GI did not advise us on diet, nor did the dietition. We felt pretty alone and it was the best my son has felt since being diagnosed 2 years ago. 10 days of food and there was blood.
They told me his FCP was 159, "normal" so question whether it's the disease or possibly c-diff. I have little doubt, it's the disease. And the first time he was in remission, his numbers never went over 50.
They told me his FCP was 159, "normal" so question whether it's the disease or possibly c-diff. I have little doubt, it's the disease. And the first time he was in remission, his numbers never went over 50.
crohnsinct
Well-known member
To recap:
T has had 13 doses of Mtx. Did 6 weeks of EEN with Mtx.
FC came down to 51.
Did 80/20 EEN and the special diet for 2 weeks
Did 50/50 EEN and special diet for 6 weeks now
3 1/2 weeks after moving to 50/50 we pulled another FC test (12 mtx doses) and I just found out it is slightly elevated.
So if she has been on mtx and EN/diet combo and inflammation is still creping up it doesn't look likely that we will be able to manage the disease with EN/diet alone.
She is asymptomatic.
Doc isn't ready to throw in the towel yet though. He thought about going back to 80/20 but decided to stay the course with 50/50 and pull another test (still waiting to hear when that will be). Also requested we be extra vigilant with the diet...I admitted to some slip ups.
So at this point it is looking like she may just be one of those people who when they add back in food disease returns. Just weird since she is on mtx also. Maybe mtx isn't handling the disease...maybe this is all just one big blip and her next fc will come down.
Sorry guys. I feel like we let you down. I know you were all hoping we could prove something with the diet/EN thing But I am not dropping diet. It has made a huge impact on O and her disease status and who knows, if we weren't doing the special diet T might have been even worse.
Cups, plates and bowls are still in reserve.
T has had 13 doses of Mtx. Did 6 weeks of EEN with Mtx.
FC came down to 51.
Did 80/20 EEN and the special diet for 2 weeks
Did 50/50 EEN and special diet for 6 weeks now
3 1/2 weeks after moving to 50/50 we pulled another FC test (12 mtx doses) and I just found out it is slightly elevated.
So if she has been on mtx and EN/diet combo and inflammation is still creping up it doesn't look likely that we will be able to manage the disease with EN/diet alone.
She is asymptomatic.
Doc isn't ready to throw in the towel yet though. He thought about going back to 80/20 but decided to stay the course with 50/50 and pull another test (still waiting to hear when that will be). Also requested we be extra vigilant with the diet...I admitted to some slip ups.
So at this point it is looking like she may just be one of those people who when they add back in food disease returns. Just weird since she is on mtx also. Maybe mtx isn't handling the disease...maybe this is all just one big blip and her next fc will come down.
Sorry guys. I feel like we let you down. I know you were all hoping we could prove something with the diet/EN thing
But I am not dropping diet. It has made a huge impact on O and her disease status and who knows, if we weren't doing the special diet T might have been even worse. Cups, plates and bowls are still in reserve.
crohnsinct
Well-known member
FWIW - just found out FC is 256.
Hugs
I wouldn't be surprised if it went up even with the strict diet
12 weeks Mtx should be long enough for control even without the diet side.
Not saying it won't work but ....
256 fc is not exactly a number that need just a little boost KWIM
Diet tends to be more if a boosting effect in general
Good luck
I wouldn't be surprised if it went up even with the strict diet
12 weeks Mtx should be long enough for control even without the diet side.
Not saying it won't work but ....
256 fc is not exactly a number that need just a little boost KWIM
Diet tends to be more if a boosting effect in general
Good luck
crohnsinct
Well-known member
Yeah...that's exactly how I feel.
My last ditch bubble hoping thought is...FC results can vary pretty wildly and the next result will be right smack in the middle of normal.
Doc is so not concerned. Has us pulling another test in 8 weeks. You know that is killing me. Not because I am worried but more because f we are going to have to make a change in treatment I want to get on with it!
crohnsinct
Well-known member
I would break it from over use!
I don't know what the next step would be. Maybe a switch to Imuran? But she has had uncontrolled disease for years now and being asymptomatic much of the time he may want to escalate to biologics. Haha...our favorite game again...out guess the GI!
I don't know what the next step would be. Maybe a switch to Imuran? But she has had uncontrolled disease for years now and being asymptomatic much of the time he may want to escalate to biologics. Haha...our favorite game again...out guess the GI!
Think you answered my question... FC can vary greatly?? If yes, then let's all stay in our bubbles and go for 'just a blip' (at least, until the next test).
But, I'm sorry if it turns out to not be just a blip. :ymad:
OMG, an at-home FC test! :yfaint: Do you think we could get a group discount!?!? :lol: Like you, probably not a good diea for me... I'd definitely overuse it! :ytongue:
But, I'm sorry if it turns out to not be just a blip.
:ymad:OMG, an at-home FC test! :yfaint: Do you think we could get a group discount!?!? :lol: Like you, probably not a good diea for me... I'd definitely overuse it! :ytongue:
Tess, LOL! In our house too!
Crohnsinistinct, Caitlyn's last FC was 350 and the doctor didn't think that was to bad actually. Of course then two weeks later they did a scope and it was not good at all.
Crohnsinistinct, Caitlyn's last FC was 350 and the doctor didn't think that was to bad actually. Of course then two weeks later they did a scope and it was not good at all.
CarolinAlaska
Holding It Together
Not good at all. Is that improved from previous?
crohnsinct
Well-known member
An increase, up from 51.
crohnsinct
Well-known member
In all my study reading for our insurance appeal on the FC test I am reading 200 is the point at which they feel the kids are not responding to the meds and it is indicative that unless something changes they will head into a flare within the next year. Luckily doc is pulling another test in a few weeks so hopefully things won't go too far off the rails.
Sorry to hear.
crohnsinct
Well-known member
T had her regularly scheduled appointment with the GI today (haha I am redundant aren't I?).
He says if her next FC test comes back at around the 256 she was at last time, we will not be changing anything. A significant increase (not sure what defines significant) will warrant a change in therapy. That change will be a move to the biologics (likely Remicade) with keeping and decreasing Mtx. She is at the max Mtx dosage for her size so keeping Mtx as monotherapy and increasing it is not an option.
Managing her disease with diet and EN is out given the 80/20 caused the FC increase. Bummer but who didn't see that coming.
So we just wait for next FC but things are good here so we are not anxious.
He says if her next FC test comes back at around the 256 she was at last time, we will not be changing anything. A significant increase (not sure what defines significant) will warrant a change in therapy. That change will be a move to the biologics (likely Remicade) with keeping and decreasing Mtx. She is at the max Mtx dosage for her size so keeping Mtx as monotherapy and increasing it is not an option.
Managing her disease with diet and EN is out given the 80/20 caused the FC increase. Bummer but who didn't see that coming.
So we just wait for next FC but things are good here so we are not anxious.
Glad you have a plan and got good news to move forward
Our GI explained fc
As 1000's is a full flare
Above 300 they get concerned your slowly heading to a flare
Below 300 they watch things closely and wait a bit to see if it's a blip
DS had a 243 once about two months after a flare
Gi said fc rises quickly but takes 3-6 months to get to normal again
Our GI explained fc
As 1000's is a full flare
Above 300 they get concerned your slowly heading to a flare
Below 300 they watch things closely and wait a bit to see if it's a blip
DS had a 243 once about two months after a flare
Gi said fc rises quickly but takes 3-6 months to get to normal again
crohnsinct
Well-known member
Pilgrim, Yes normal at 50. It was 8 weeks since her last FC test and that was 51. So the jump to 256 is significant to me but I guess I have to defer to his experience with these things. Her next FC test will be 6/11 (8 weeks since the last) and we will see what happens. I am not totally warm and fuzzy with letting her sit in the 250's but I do really like and trust our GI so I will play nice for a bit.
crohnsinct
Well-known member
Oh! We are getting it but insurance isn't paying for it:ack:
crohnsinct
Well-known member
Update:
T's latest FC result is 698. Up from 256 in April and 51 in February (on EEN).
Doc has given us two options. Do a course of Entocort or try diet again. I am not sure what he means by diet. I wrote back to ask but assuming a number of weeks on EEN and then phase in the whole foods, no processed foods, low animal product diet.
I am going to leave this up to her. No shock what I want to try.
Just wondering what the thinking is. She has been on Mtx for 21 weeks. Are they thinking Mtx just needs a little boost (similar to what we did with O and Remicade) or time? Are they thinking this is a little flare of sorts that just needs to be handled and then business as usual? Or is there a chance that Mtx just isn't going to work for her?
Yeah I know, no one has the answer to my questions. Crystal ball is in the shop.
Guess they just want to try something before abandoning Mtx and/or escalating.
Maybe just maybe if we do diet again and it works, we could revisit controlling this thing on the 50/50?
She has been having some issues popping up but nothing I couldn't explain away with sports/end of school year/pre teen excuses...bummer!
T's latest FC result is 698. Up from 256 in April and 51 in February (on EEN).
Doc has given us two options. Do a course of Entocort or try diet again. I am not sure what he means by diet. I wrote back to ask but assuming a number of weeks on EEN and then phase in the whole foods, no processed foods, low animal product diet.
I am going to leave this up to her. No shock what I want to try.
Just wondering what the thinking is. She has been on Mtx for 21 weeks. Are they thinking Mtx just needs a little boost (similar to what we did with O and Remicade) or time? Are they thinking this is a little flare of sorts that just needs to be handled and then business as usual? Or is there a chance that Mtx just isn't going to work for her?
Yeah I know, no one has the answer to my questions. Crystal ball is in the shop.
Guess they just want to try something before abandoning Mtx and/or escalating.
Maybe just maybe if we do diet again and it works, we could revisit controlling this thing on the 50/50?
She has been having some issues popping up but nothing I couldn't explain away with sports/end of school year/pre teen excuses...bummer!
Sorry I forgot, what dose of MTX is she own? Is it injection or oral?
So, she's been on mtx for 5 months? I would think that would be plently of time have they increased dose or anything yet?
WMybe the EEN gives it a boost and then strict diet helps. It has never been enough for us but this disease is so freakin' individual that you just never know!
Sending hugs and hoping it's just a small flare easily controlled quickly!
So, she's been on mtx for 5 months? I would think that would be plently of time have they increased dose or anything yet?
WMybe the EEN gives it a boost and then strict diet helps. It has never been enough for us but this disease is so freakin' individual that you just never know!
Sending hugs and hoping it's just a small flare easily controlled quickly!
crohnsinct
Well-known member
She is on the max dose the doc is comfortable with for her size. 20 mg. She recently switched to oral so I am thinking we will be switching back to injections as well.