Hello Friends, Our saga with Crohn's continues for my sweet 15 year old son. Diagnosed this past March, began Remicade in April and has since had three doses. When he began this journey, his Fecal Calprotectin Level was at 1600 (my poor guy). He was just recently tested again and it's still high, but did drop....922. Does this mean that the Remicade isn't doing its' job on him? My concern is that there is still lots of inflammation based on this test which could be causing more damage. We do see his doctor tomorrow for further clarification, but I thought I might be able to reach out to the group for some feedback. Thank you so much. This journey is clearly a trying one. I don't think I've ever shed so many tears! And, thanks for listening!
Wish I had something to cheer about.....😢
- Thread starter FranG
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Help Support Crohn's Disease Forum:
Thank you Ron. I appreciate your support so much. It just breaks my heart.....wish I could take this away from him. We did see some folks at Boston's Children's Hospital a couple of weeks ago. They mentioned that surgery may be be necessary, however, they're awaiting results from his latest MRE (done this past Saturday) to see if there's been improvement since the beginning of this journey. We shall see. I hope you are doing well, Ron. All you wonderful people that give of your time is so greatly appreciated. I have found this group so helpful, and it gives me such hope for my son.
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Really sorry to hear he's not doing well. How long has he been on Remicade? What dose is he on? He may just need a higher dose or more frequent infusions (or both!). Kids who are very inflamed tend to need a lot of Remicade.
We started at 5 mg/kg and eventually went up to 7.5 mg/kg and then 10 mg/kg every 4-5 weeks before my daughter got much better. It did take a while before we saw a real response -- 4 infusions or so before she was better.
Is he also on something like 6MP or MTX?
Another option would be EEN - exclusive enteral nutrition - which can be used to induce remission. I'll tag a few parents who have more experience than I do with that:
my little penguin
Pilgrim
pdx
crohnsinct
Clash
Hang in there :ghug:.
We started at 5 mg/kg and eventually went up to 7.5 mg/kg and then 10 mg/kg every 4-5 weeks before my daughter got much better. It did take a while before we saw a real response -- 4 infusions or so before she was better.
Is he also on something like 6MP or MTX?
Another option would be EEN - exclusive enteral nutrition - which can be used to induce remission. I'll tag a few parents who have more experience than I do with that:
my little penguin
Pilgrim
pdx
crohnsinct
Clash
Hang in there :ghug:.
Hi Maya, thank you so kindly for all your information and support; as well. He has had only three infusions so far. He is on 5 mg/kg. At this point, he is "only' on Remicade, but his doctor has also brought up adding the possibility of Methotrexate. I'm also thinking she might be looking to up his dose of Remicade after we see her tomorrow. How closely together can they give an infusion? He just had one on June 9th, and is not scheduled again until the beginning of August. Thank you for tagging your friends regarding EEN. Again, I appreciate your help so much!
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They can give infusions every 4 weeks if necessary. They can also go up to 10 mg/kg and sometimes doctors go even higher.
It sounds like you have some room to work with Remicade - with both the dose and the frequency, which is good. Have they ever done a Remicade levels test to see how he's doing on this dose or to see if he has antibodies to Remicade?
MTX is also a good option -- not only can it give Remicade a "boost" but it could also prevent him from forming antibodies to Remicade.
Good luck!
It sounds like you have some room to work with Remicade - with both the dose and the frequency, which is good. Have they ever done a Remicade levels test to see how he's doing on this dose or to see if he has antibodies to Remicade?
MTX is also a good option -- not only can it give Remicade a "boost" but it could also prevent him from forming antibodies to Remicade.
Good luck!
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A change in his remi dose/frequency may help and, for some people, it does take a while for remicade to fully kick in.
I'd also explore the possibility of EEN. It's a liquid diet, nutritional formula only, for an extended period, usually 6-8 weeks. It's success rate at inducing remission is comparable to steroids but has none of the side effects. However, it is difficult - to go without food for such a long time.
EEN was my son's initial treatment to induce remission and it worked very well for him. He did it for six weeks, just before he turned 17. To be honest, I'm not sure I would have had the willpower but, somehow, he managed. He ingested the formula overnight, through an NG (nasogastric) tube. He was taught to insert it and would insert it nightly and remove in the morning. Overnight, he would ingest the formula while sleeping. This part of it wasn't that difficult (more annoyances - noise of pump, etc.). Duriing the day, he was clear fluids - broth, clear pop, apple juice, jello, popsicles, freezies, etc. This helped - he would take broth to 'eat' at lunch with his friends and I arranged for the school to keep a supply of freezies for him. He would have the same for dinner.
Many kids here have used EEN to achieve remission, even while on meds (no problem to do EEN with meds). And, many, including my son, use EN as a supplement to their regular diet.
If you're son is willing, discuss with your GI...
:ghug:
I'd also explore the possibility of EEN. It's a liquid diet, nutritional formula only, for an extended period, usually 6-8 weeks. It's success rate at inducing remission is comparable to steroids but has none of the side effects. However, it is difficult - to go without food for such a long time.
EEN was my son's initial treatment to induce remission and it worked very well for him. He did it for six weeks, just before he turned 17. To be honest, I'm not sure I would have had the willpower but, somehow, he managed. He ingested the formula overnight, through an NG (nasogastric) tube. He was taught to insert it and would insert it nightly and remove in the morning. Overnight, he would ingest the formula while sleeping. This part of it wasn't that difficult (more annoyances - noise of pump, etc.). Duriing the day, he was clear fluids - broth, clear pop, apple juice, jello, popsicles, freezies, etc. This helped - he would take broth to 'eat' at lunch with his friends and I arranged for the school to keep a supply of freezies for him. He would have the same for dinner.
Many kids here have used EEN to achieve remission, even while on meds (no problem to do EEN with meds). And, many, including my son, use EN as a supplement to their regular diet.
If you're son is willing, discuss with your GI...
:ghug:
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Ds just finished EEN again ( third time )
He drinks his all orally
He has used Peptamen Jr and recently neocate Jr
It's very hard but does work
Sometimes meds just need a boost to help them do some of the lifting until the med can kick in fully or you have hit a bump in the road .
Polymeric formulas ( boost kid /pediasure ) taste the best and are the easiest to drink but harder to digest than the other formulas
Peptamen and peptide are semi elemental so broken down protiens easier on the gut but taste is harder to handle to drink
Neocate Jr and elecare Jr are amino acid based which means they only need a few inches of healthy instestine to work . So the gut doesn't have to work as hard and can rest
It's barely drinkable
Most can't drink it and need a tube
He drinks his all orally
He has used Peptamen Jr and recently neocate Jr
It's very hard but does work
Sometimes meds just need a boost to help them do some of the lifting until the med can kick in fully or you have hit a bump in the road .
Polymeric formulas ( boost kid /pediasure ) taste the best and are the easiest to drink but harder to digest than the other formulas
Peptamen and peptide are semi elemental so broken down protiens easier on the gut but taste is harder to handle to drink
Neocate Jr and elecare Jr are amino acid based which means they only need a few inches of healthy instestine to work . So the gut doesn't have to work as hard and can rest
It's barely drinkable
Most can't drink it and need a tube
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Hi. My son did EEN two years ago for about 6 weeks when trying to taper off steroids. Now he does about 1/3 up to 1/2 on EEN. He has used Peptamen Jr and Boost. Did the drs at Boston Children suggest EEN? They were very supportive of this for my son.
I thank you all for your stories and successes related to EEN. I commend each of your children for being able to adhere to this as it wouldn't be easy, however, the end result is clearly worth it, it appears. I am going to bring this up with my child's GI. EEN was not brought up when we went for our second opinion at Boston's Children's Hospital. (I know one have you had asked, but for some reason I'm not allowed to scroll back up to find out who!!! I'm sorry!)
After seeing out GI yesterday, she would like to up his dose of Remicade and begin him on Methotrexate, as well. We will also be treating him every four weeks rather than every eight weeks. She feels like we've not given the medication enough of a chance to work, and until then, she would like to hold off on surgery. I'm keeping my fingers crossed and praying like mad at the same time. Can anyone of you who have your children on Methotrexate tell me what to expect as far as side effects? Again, I appreciate every single one of your replies. What would I do without the help of this group. I hope one day I'll be able to give back as much as I've received from all of you. Forever grateful.
After seeing out GI yesterday, she would like to up his dose of Remicade and begin him on Methotrexate, as well. We will also be treating him every four weeks rather than every eight weeks. She feels like we've not given the medication enough of a chance to work, and until then, she would like to hold off on surgery. I'm keeping my fingers crossed and praying like mad at the same time. Can anyone of you who have your children on Methotrexate tell me what to expect as far as side effects? Again, I appreciate every single one of your replies. What would I do without the help of this group. I hope one day I'll be able to give back as much as I've received from all of you. Forever grateful.
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Not a doctor! :lol: Just a mom who BTDT (been there, done that)! 
Hopefully, you'll see improvement after the change in frequency and adding in MTX! And, hopefully, he'll be wiling to try EEN.
FWIW, while I know there are lots of kids who just can't tolerate the NG tube, but it was quite easy for my son. AND, when given the choice, he preferred the tube rather than trying to take in the same quantity of formula by drinking shakes all day.
If your son wants to try the tube, be sure to get a small size - my son's hospital gave him size 6Fr. Apparently, this is 'child' size but my son was 5'10", 150 lbs when he used it. Once he learned how to insert (nurse taught him 3 or 4 times), within a few days, he was inserting the tube in seconds. Taking it out in the morning is even easier. If your son and his friends are anything like my son, my son even had an 'audience' at times as his friends were really curious in watching him insert the tube! :lol: (BTW, all his friends were great and very supportive during the six weeks!)
Also, sometimes one nostril works better than the other. For some reason, my son had no problem on his left side but could never do it on his right side.
While my son did EEN for only six weeks, he did supplemental EN, using the tube, for 2 years... so, if your son does want to try the tube, let me know if you have questions/problems... I probably dealt with it at some point!
Hopefully, you'll see improvement after the change in frequency and adding in MTX! And, hopefully, he'll be wiling to try EEN.
FWIW, while I know there are lots of kids who just can't tolerate the NG tube, but it was quite easy for my son. AND, when given the choice, he preferred the tube rather than trying to take in the same quantity of formula by drinking shakes all day.
If your son wants to try the tube, be sure to get a small size - my son's hospital gave him size 6Fr. Apparently, this is 'child' size but my son was 5'10", 150 lbs when he used it. Once he learned how to insert (nurse taught him 3 or 4 times), within a few days, he was inserting the tube in seconds. Taking it out in the morning is even easier. If your son and his friends are anything like my son, my son even had an 'audience' at times as his friends were really curious in watching him insert the tube! :lol: (BTW, all his friends were great and very supportive during the six weeks!)
Also, sometimes one nostril works better than the other. For some reason, my son had no problem on his left side but could never do it on his right side.
While my son did EEN for only six weeks, he did supplemental EN, using the tube, for 2 years... so, if your son does want to try the tube, let me know if you have questions/problems... I probably dealt with it at some point!
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:lol: Unfortunately, there aren't very many meds for Crohn's, so the protocols are pretty standard!!
We have also done a feeding tube -- tiny size (6 Fr). Like spaghetti. My daughter was very nervous but got good at inserting it surprisingly quickly. Within a week, she was so good at it that it just took a few seconds. The first night was hard, but after that, she did great. She said it was MUCH better than drinking her shakes.
Both my daughters have been on MTX. The side effects really vary, depending on the kid. MOST kids are absolutely fine with it. You can do pills or injections. We started off with pills for both my girls, but they got nauseous with the pills, so we switched to injections and that helped. Folic acid is given to prevent side effects and if he has nausea, they will give him Zofran.
My older daughter has mild nausea and fatigue with MTX and has been on it for years. No real problems with it -- she doesn't even need Zofran most weeks. She gives herself the shot every Saturday night. Many parents do it on a Friday or a Saturday, so that if your kiddo has side effects, it'll be over the weekend and won't interfere with school.
We also did the shots right before bed so they'd sleep through the worst of the side effects.
My younger daughter had a harder time with MTX -- severe nausea and dizziness. Her reaction was pretty extreme though. It worked very well for her so we tried for a long time to keep her on MTX (upped folic acid, gave her more Zofran, lowered the dose) but she still got too nauseous. We switched to Imuran and she's doing great on that.
MOST kids really do very well with MTX and just have mild side effects (or no side effects!). The shot is with a tiny needle and pretty painless -- both my girls gave it to themselves. We started out icing before the shot but they pretty quickly said that wasn't necessary.
I'll tag some of the other parents who have kids on MTX with Remicade/Humira --
Clash, my little penguin, crohnsinct, pdx, Mehita
Good luck!!
We have also done a feeding tube -- tiny size (6 Fr). Like spaghetti. My daughter was very nervous but got good at inserting it surprisingly quickly. Within a week, she was so good at it that it just took a few seconds. The first night was hard, but after that, she did great. She said it was MUCH better than drinking her shakes
. Both my daughters have been on MTX. The side effects really vary, depending on the kid. MOST kids are absolutely fine with it. You can do pills or injections. We started off with pills for both my girls, but they got nauseous with the pills, so we switched to injections and that helped. Folic acid is given to prevent side effects and if he has nausea, they will give him Zofran.
My older daughter has mild nausea and fatigue with MTX and has been on it for years. No real problems with it -- she doesn't even need Zofran most weeks. She gives herself the shot every Saturday night. Many parents do it on a Friday or a Saturday, so that if your kiddo has side effects, it'll be over the weekend and won't interfere with school.
We also did the shots right before bed so they'd sleep through the worst of the side effects.
My younger daughter had a harder time with MTX -- severe nausea and dizziness. Her reaction was pretty extreme though. It worked very well for her so we tried for a long time to keep her on MTX (upped folic acid, gave her more Zofran, lowered the dose) but she still got too nauseous. We switched to Imuran and she's doing great on that.
MOST kids really do very well with MTX and just have mild side effects (or no side effects!). The shot is with a tiny needle and pretty painless -- both my girls gave it to themselves. We started out icing before the shot but they pretty quickly said that wasn't necessary.
I'll tag some of the other parents who have kids on MTX with Remicade/Humira --
Clash, my little penguin, crohnsinct, pdx, Mehita
Good luck!!
CarolinAlaska
Holding It Together
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I'm glad it sounds like your GI is on the ball. We did EEN too in the beginning - drinking and NG tube for 8 weeks. Her FC levels came down over several months as we waited for 6MP to kick in. They've stayed down ever since except when c diff infection. Hopefully your child's will continue to come down too and stay down!
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My 12 year old daughter was diagnosed in January and we rode a very emotional roller coaster of feeling better, feeling horrible, feeling better, back to stomach pain and losing weight and vomiting. Our GI said that these kiddos, especially at the beginning stages when inflammation is so present, just need a lot of tweaks to see what meds/combo of meds work best for them. For my daughter, it was upping Remicade infusions to every 4 weeks, 10 mg/kg, AND adding MTX shots weekly. We started that about 7 weeks ago and she has been doing amazing!!! Even at sleepaway soccer camp this week - which a few months ago I NEVER would have imagined her being able to do!
So far, she is handling this protocol like a champ. We decided on doing MTX via shot rather than orally to help with the nausea and so far, so good. Now, she doesn't really love shot day ... but she grins and bears it because she knows that it has given her her life back. Our GI's hope is that we can use the MTX with the Remicade to really get her into a good, lasting remission of symptoms for a year and then remove the MTX from the regimen.
Like others said above, we do the shot right before bed in case it does make her nauseous (so far it hasn't really) ... but her GI did prescribe Zofran just in case. So far she hasn't needed it. And she is also on a folic acid supplement which they need when on MTX.
I know how scary this all is. All of us have been right where you are .. and I would say I am still a newbie for sure. This board has been a tremendous help for me. Just reading others stories and knowing you are not alone. As well as giving you the vocabulary and the right questions to be asking your GI.
They will find the right combo of meds to get your son's symptoms into remission as well! It is just trial and error ... and trying again .. until something works.
Hang in there! Back in March I was at my wit's end ... and now I feel so hopeful for my daughter!
So far, she is handling this protocol like a champ. We decided on doing MTX via shot rather than orally to help with the nausea and so far, so good. Now, she doesn't really love shot day
... but she grins and bears it because she knows that it has given her her life back. Our GI's hope is that we can use the MTX with the Remicade to really get her into a good, lasting remission of symptoms for a year and then remove the MTX from the regimen. Like others said above, we do the shot right before bed in case it does make her nauseous (so far it hasn't really) ... but her GI did prescribe Zofran just in case. So far she hasn't needed it. And she is also on a folic acid supplement which they need when on MTX.
I know how scary this all is. All of us have been right where you are .. and I would say I am still a newbie for sure. This board has been a tremendous help for me. Just reading others stories and knowing you are not alone. As well as giving you the vocabulary and the right questions to be asking your GI.
They will find the right combo of meds to get your son's symptoms into remission as well! It is just trial and error ... and trying again .. until something works.
Hang in there! Back in March I was at my wit's end ... and now I feel so hopeful for my daughter!
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My son started out on Remicade every 8 weeks. It worked ok at first but symptoms were creeping back. Fast forward a year and a half later... Still doing Remicade but every 4 weeks, higher dose too. Added in methotrexate 4 mo ago, no side effects. Added in ng tube 4 mo ago for supplement nutrition....if I knew how easy the tube would be I would have done it sooner....
My son tried the tube in the hospital when he was first diagnosed and they absolutely tortured him trying to put it in. One of the worst things I've ever witnessed in my life. Now he's quite fearful of the idea. Luckily, he was able to drink the horrible stuff.
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Yes, I think the tube size makes a big difference. Also, be sure to use the 'guide wire' (I think that's what it was called). Its a thin wire that is fed into the middle of the tube, without the guide wire, the tube is as floppy as cooked spaghetti, which makes it difficult to insert.
If your son isn't opposed to trying this, search for 'Kids on EN' and 'Enteral Nutrition', you'll find a couple of threads in the parents section that discussed EEN in more detail.
If your son isn't opposed to trying this, search for 'Kids on EN' and 'Enteral Nutrition', you'll find a couple of threads in the parents section that discussed EEN in more detail.
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Sorry to hear about all your son has gone through. My daughter did well with methotrexate. The shot barely hurt her. She had some nausea with it but we gave her zofran along with it which helped. I hope it helps him!
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My son is on a six week Remicade cycle and we just added mtx a couple of months ago. He is horrible with needles so he's doing the oral dose once a week before bed on Friday nights. He hasn't had any side effects (tho I'm not sure the gingivitis is due to mtx or not). Don't forget that you'll have to also add folic acid with the mtx.
Thank you again for all your suggestions, feedback, but mostly for your support. I really can't tell you how helpful this forum has been! I wish that I coukd personally thank you all in person!
FightingforJo, your story fills me with hope. So thrilled that your daughter is feeling better which, in turn, is helping you to feel less anxious and stressed. Many times, I feel that my son is handling this better than my husband and myself. I know when he was initially diagnosed, the doctor's made it out like, "He'll be well in no time....start him on the medication, and he'll be back on course!" Clearly, this hasn't been the case, although the the past week or so, he seems to be feeling much better. He's been out golfing which is his passion, and seems to be enjoying life.
We did begin the Methotrexate a couple of weeks ago and tomorrow he goes for his Remicade infusion. We're on a 4 week interval, and have increased the dosage. I'm crossing my fingers so tightly that this works, or at least, begins helping.
So, I've subtly brought up EEN to my son. Lenny, like your child, the thought of the NG tube is beyond frightening to him due to a traumatic experience whereby they had to use it on him during one of his hospitalizations. Not only was the placement of the tube traumatic for him, but for me, as well. Horrible, horrible experience to say the least. I think I will take up this discussion with his GI upon our next visit. Want to do what's in the best interest for him, but at the same time, do not want him further traumatized. (We've recently sought out a therapist who deals with children with chronic illnesses, and she's been wonderful. I think this is really going to help my son work through many of his fears, in addition to, helping him find his new normal). Thank you again for allowing me to vent our situation and for each and everyone of your posts. I hope the day finds you all doing well! Big hugs to all of you!
FightingforJo, your story fills me with hope. So thrilled that your daughter is feeling better which, in turn, is helping you to feel less anxious and stressed. Many times, I feel that my son is handling this better than my husband and myself. I know when he was initially diagnosed, the doctor's made it out like, "He'll be well in no time....start him on the medication, and he'll be back on course!" Clearly, this hasn't been the case, although the the past week or so, he seems to be feeling much better. He's been out golfing which is his passion, and seems to be enjoying life.
We did begin the Methotrexate a couple of weeks ago and tomorrow he goes for his Remicade infusion. We're on a 4 week interval, and have increased the dosage. I'm crossing my fingers so tightly that this works, or at least, begins helping.
So, I've subtly brought up EEN to my son. Lenny, like your child, the thought of the NG tube is beyond frightening to him due to a traumatic experience whereby they had to use it on him during one of his hospitalizations. Not only was the placement of the tube traumatic for him, but for me, as well. Horrible, horrible experience to say the least. I think I will take up this discussion with his GI upon our next visit. Want to do what's in the best interest for him, but at the same time, do not want him further traumatized. (We've recently sought out a therapist who deals with children with chronic illnesses, and she's been wonderful. I think this is really going to help my son work through many of his fears, in addition to, helping him find his new normal). Thank you again for allowing me to vent our situation and for each and everyone of your posts. I hope the day finds you all doing well! Big hugs to all of you!
