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Getting ready for upper and lower scope
- Thread starter Ladybug12
- Start date
Here is a link to a thread with lots of tips:
http://www.crohnsforum.com/showthread.php?t=75284
I hope it goes well.
http://www.crohnsforum.com/showthread.php?t=75284
I hope it goes well.
Silly juice or aka versed
Some kids don't like it after they wake up
Since they don't remember much if what happened
Good luck
Some kids don't like it after they wake up
Since they don't remember much if what happened
Good luck
I just spoke with the GI Doctor. There is a lot of inflammation. He suggested upping the dose of mtx and getting her to drink high calorie shakes 4 times a day. I'm not taking this very well. I don't want to cry in front of my boys. I just feel so loss right now.
My daughter also did supplemental EN (formula). She was unable to drink enough formula so ended up needing a tube. But some kids are very successful with drinking formula. Keeping the formula cold and using a straw helps.
Usually EEN is used to induce remission, and supplemental EN is used for supplemental nutrition and to help the kiddo grow and gain. There's also some evidence it helps kids stay in remission.
Remind me, is she also on Remicade? Or just MTX?
Usually EEN is used to induce remission, and supplemental EN is used for supplemental nutrition and to help the kiddo grow and gain. There's also some evidence it helps kids stay in remission.
Remind me, is she also on Remicade? Or just MTX?
I asked about the overnight feedings and the other drinks that you guys mentioned on this sight. He think it is best to get her to drink the Ensure drinks 4 times a day. She is back to 86lbs since doing the overnight prep. Her previous weight before symptoms was 94lbs. Her hair has fallen and thin out, I think that is due to the infusions. Right now I am just trying to figure out a way to help her physically and emotionally.
The good part is that Ensure is the most palatable of the drinks. It just depends on if she tolerates it or if she needs a more broken down formula.
Since you are trying Ensure, I would get a couple of flavors for her to try. Your GI's office may even have samples. Make sure they're cold, and have her drink with a straw.
I will tag some other parents whose kids have been able to drink their formula.
my little penguin
crohnsinct
Since you are trying Ensure, I would get a couple of flavors for her to try. Your GI's office may even have samples. Make sure they're cold, and have her drink with a straw.
I will tag some other parents whose kids have been able to drink their formula.
my little penguin
crohnsinct
crohnsinct
Well-known member
When did she start Methotrexate? That could be the cause of the hair falling out (gets better with time) although the loosing weight and not absorbing nutrition would be high on my suspect list.
When did she start Remicade? How much is he increasing her methotrexate?
Is she having symptoms right after infusions or does she get some relief right after and then the Remi just wears off? Sorry I searched your post history and can't find what led you to this point and just trying to get an idea of why just the increase in mtx if she had considerable inflammation.
As for the formula, is he asking for 4 servings a day to try to help induce remission or just gain weight? If just gain weight, there are lots of recipes on the Boost and Ensure sites for smoothies and such that help make the shakes more palatable.
I know your doc asked for Ensure but Ensure and Boost are pretty interchangeable so I would also try the Boost shakes. One of the brands makes a dark chocolate and one makes a coffee flavored shake. My girls were direct opposites of each other. One liked Boost chocolate and Vanilla Ensure and vice versa for the other. They did Exclusive Enteral Nutrition to induce remission while we waited for the maintenance meds to take over.
When did she start Remicade? How much is he increasing her methotrexate?
Is she having symptoms right after infusions or does she get some relief right after and then the Remi just wears off? Sorry I searched your post history and can't find what led you to this point and just trying to get an idea of why just the increase in mtx if she had considerable inflammation.
As for the formula, is he asking for 4 servings a day to try to help induce remission or just gain weight? If just gain weight, there are lots of recipes on the Boost and Ensure sites for smoothies and such that help make the shakes more palatable.
I know your doc asked for Ensure but Ensure and Boost are pretty interchangeable so I would also try the Boost shakes. One of the brands makes a dark chocolate and one makes a coffee flavored shake. My girls were direct opposites of each other. One liked Boost chocolate and Vanilla Ensure and vice versa for the other. They did Exclusive Enteral Nutrition to induce remission while we waited for the maintenance meds to take over.
crohnsinct
Well-known member
Oh yeah and in addition to the cold and straw recommendations it also helps to serve in a cup, thermos etc with a lid so you can't smell the shake since smell is so closely tied to taste.
Thanks for tip. Smell is a big issue for now when it comes to trying new things.
How many mg/kg of remicade is she getting ?
You can go up to 10 mg/kg every 4 weeks
And 25 mg of mtx
Mtx is not that strong and if they found a lot on inflammation
Not sure why the tiny bump in mtx
Verses increasing remicade
Since mtx is just in the side lines to keep antibodies at bay
You can go up to 10 mg/kg every 4 weeks
And 25 mg of mtx
Mtx is not that strong and if they found a lot on inflammation
Not sure why the tiny bump in mtx
Verses increasing remicade
Since mtx is just in the side lines to keep antibodies at bay
crohnsinct
Well-known member
MLP is thinking along the same lines as I.
It is important to figure out how soon after infusion her symptoms are occurring. If right away then it is more likely that she has lost response to Remicade. In that case no amount of playing with mtx is going to help and a switch of biologic is probably more indicated.
If it takes a bit then the dosage level of Remicade might not be high enough and she might be metabolizing the med more quickly. What dose is she on? My older daughter was on 12 mg/kg every 5 weeks when inflammation was at its worst. Inflammation also contributes to burning through the med quickly so it is pretty much standard to be at higher doses when starting and backing down later.
It is also pretty usual for Crohn's to make the girls cycle worse.
FWIW - mtx was pretty ineffective with getting my daughters' inflammation under control but it is worth a shot.
There are studies that show that supplemental enteral nutrition is helpful at maintaining remission but not so much at inducing remission. Most studies have shown that exclusive enteral nutrition is needed to induce remission. When my older daughter was dx'd she was on Remicade for 4 months and never got to remission. We added exclusive to get her to remission and then handed Remicade a healed bowel and it was able to take over from there.
The whole process is a ebb and flow kinds thing and you just have to stay flexible and not get too attached to any one therapy.
It is important to figure out how soon after infusion her symptoms are occurring. If right away then it is more likely that she has lost response to Remicade. In that case no amount of playing with mtx is going to help and a switch of biologic is probably more indicated.
If it takes a bit then the dosage level of Remicade might not be high enough and she might be metabolizing the med more quickly. What dose is she on? My older daughter was on 12 mg/kg every 5 weeks when inflammation was at its worst. Inflammation also contributes to burning through the med quickly so it is pretty much standard to be at higher doses when starting and backing down later.
It is also pretty usual for Crohn's to make the girls cycle worse.
FWIW - mtx was pretty ineffective with getting my daughters' inflammation under control but it is worth a shot.
There are studies that show that supplemental enteral nutrition is helpful at maintaining remission but not so much at inducing remission. Most studies have shown that exclusive enteral nutrition is needed to induce remission. When my older daughter was dx'd she was on Remicade for 4 months and never got to remission. We added exclusive to get her to remission and then handed Remicade a healed bowel and it was able to take over from there.
The whole process is a ebb and flow kinds thing and you just have to stay flexible and not get too attached to any one therapy.
The Remicade dosage is 5mg. I just spoke with the doctor and he is now prescribing prednisone again for the inflammation.
Kate Farms is what he is now recommending since she is experiencing pain after the nutritional drinks.
Have you considered a second opinion? I ask because increasing the MTX and not the Remicade seems odd to me. Also, supplemental EN will certainly help her gain and grow, but it won't induce remission. I guess now that he's adding Prednisone, it makes more sense.
But I have never even heard of Kate Farms - kids are usually put on Ensure/Pediasure/Boost if they can tolerate polymeric formulas. If they need semi-elemental formulas, it's usually Pediasure Peptide or Peptamen Jr. If they need an even more broken down formula - an elemental formula - then Elecare or Neocate Jr are used.
Have they done her Remicade levels?
Where are you located? The best pediatric GI departments are at Boston Children's, Cincinnati Children's and CHOP. A second set of eyes can REALLY help.
But I have never even heard of Kate Farms - kids are usually put on Ensure/Pediasure/Boost if they can tolerate polymeric formulas. If they need semi-elemental formulas, it's usually Pediasure Peptide or Peptamen Jr. If they need an even more broken down formula - an elemental formula - then Elecare or Neocate Jr are used.
Have they done her Remicade levels?
Where are you located? The best pediatric GI departments are at Boston Children's, Cincinnati Children's and CHOP. A second set of eyes can REALLY help.
I am located in Dallas,TX. She is being seen at Children's Dallas. It has been difficult finding a "good" doctor. Most GI doctors on the list didn't answer calls or had a long waiting list. The last time her levels were checked they were at 8.7
Some of those hospitals will do a record review - so you don't actually have to travel. I think BCH and Cincinnati Children's do that - not sure about CHOP.
I would put your name on a waiting list of a doctor you do want to see and then call about cancellations. Sometimes they can put you on a cancellation list and other times you need to call every few days to ask if there's been a cancellation. We have done that. It's a pain, but it works.
I just noticed that your daughter has been on Remicade since June 2016 - and is flaring again? Has she ever been in remission? It sounds like she might need a dose increase and possibly, if that doesn't work, a different biologic.
I would put your name on a waiting list of a doctor you do want to see and then call about cancellations. Sometimes they can put you on a cancellation list and other times you need to call every few days to ask if there's been a cancellation. We have done that. It's a pain, but it works.
I just noticed that your daughter has been on Remicade since June 2016 - and is flaring again? Has she ever been in remission? It sounds like she might need a dose increase and possibly, if that doesn't work, a different biologic.
Hi Maya,
The last time her crp levels showed no inflammation was in June and July. I just got a response back from the nurse stating that the last time her levels for remicade were checked in November. They were at 5.53. The Mtx was recently added a little over a month ago. Prior to the procedure she had some complaints due to being on her cycle. Previously, she had an MRI that showed improvement from the previous but showed inflammation. This is why MTX was added. During the prep with the dulcolax pills I felt like I was doing harm with all the cramping and pain she was going through the first day of the prep. I feel lost at the moment. Thank you and thanks to everyone for taking the time out to respond to the questions I've posted here.
crohnsinct
Well-known member
When were the levels taken? Was she in remission? 8.7 is a solid level so I would understand the GI not increasing the Remicade but only if it is a recent level.
5mg/kg is the lowest dose. Many kids on here are up around 10 mg/kg when inflamed and many stay that high or just a tad lower during remission.
FWIW -- my daughter was at 10mg and was doing great. Doc slowly lowered dose down to 5mg and whammo FLARE!
5mg/kg is the lowest dose. Many kids on here are up around 10 mg/kg when inflamed and many stay that high or just a tad lower during remission.
FWIW -- my daughter was at 10mg and was doing great. Doc slowly lowered dose down to 5mg and whammo FLARE!
Crohnsinct
Probably meant
That a level of 5.53 is much lower
than a normAl level of
8.7
Right crohnsinct
Probably meant
That a level of 5.53 is much lower
than a normAl level of
8.7
Right crohnsinct
5.53 is on the lower side. MTX can sometimes increase Remicade trough levels, but increasing the dose is quicker and more effective. They can go all the way to 10 mg/kg every 4 weeks (and sometimes even go higher).
I hope your kiddo feels better soon. The prep process is miserable for all kids, but necessary for the info scopes give. I hate giving my kiddo Dulcolax too - it's awful!
I hope your kiddo feels better soon. The prep process is miserable for all kids, but necessary for the info scopes give. I hate giving my kiddo Dulcolax too - it's awful!
In looking at the paperwork, she has always been on 5mg. He has never increased the dosage. She was receiving her treatments every 8 weeks. This was changed when I noticed she was hurting a couple of weeks before her infusions. This was always close to when her cycle was due. He then changed the treatments to every 6 weeks.
If she's getting 5 mg/kg and her levels are only 5.53, then you definitely have room to increase the dose and even the frequency.
However, if they're 8.7, then probably increasing the dose won't help a whole lot. You said both things, so not sure which you meant was the most recent level?
For what it's worth, my daughter is flaring too and we found that her symptoms get a LOT worse during her period while she is flaring. When she isn't flaring, she's usually fine during her period.
However, if they're 8.7, then probably increasing the dose won't help a whole lot. You said both things, so not sure which you meant was the most recent level?
For what it's worth, my daughter is flaring too and we found that her symptoms get a LOT worse during her period while she is flaring. When she isn't flaring, she's usually fine during her period.
crohnsinct
Well-known member
OK The posts were flying fast and I posted before the one that said the last level was 5.53. I was responding to the Remicade dose of 5.
So YES 5.53 is a low trough level. Most studies state acceptable is 5-10 and most favor closer to 10. My daughter was just tested and her level was 5.6 and guess what...she is flaring.
Also, the fact that your daughter gets some relief right after infusions but gets worse as time goes on would indicate that her dose just isn't high enough.
So YES 5.53 is a low trough level. Most studies state acceptable is 5-10 and most favor closer to 10. My daughter was just tested and her level was 5.6 and guess what...she is flaring.
Also, the fact that your daughter gets some relief right after infusions but gets worse as time goes on would indicate that her dose just isn't high enough.