My son who is 3 years of age has been on pediasure for about 3 weeks, the first 2 weeks it was mostly pediasure and a little bit of food. A week ago we started with only pediasure, however we gave him a tortilla on Monday so we cheated. He has been having little bit of blood every day, since the tortilla it has been worse. Our doctor said that pediasure doesn’t work for everyone and we are going to try it for one more week with zero food and then move to antibiotics. Ladies, im sorry about my language but I feel like shit because is obvious that he is in pain and he is having a flare. He is not eating anything but pediasure and is not even helping. I’m new to this journey and I feel so hopeless and depressed. Any suggestions?
Feeling defeated today, please tell me it will get better
- Thread starter Mari101
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Why antibiotics?
Antibiotics does not treat Crohns
There are classes of drugs
5-asa (pentasa /aspiro etc ..)
Theses are very mild. Often used first in little kids
They really don’t fix Crohns
Formula only (pediasure ) takes 6-8 weeks to work
Not 1-2 weeks
Can you get a second opinion ?
Here is a list of the drugs used to treat crohn
http://www.crohnscolitisfoundation.org/resources/types-of-medications.html
Here is how pediatric Crohns is managed
https://emedicine.medscape.com/article/928288-treatment#d1
The only antibotics would be flagyl and cipro
Flagyl makes everything including water taste like metal
My kiddo hated it
Neither can be used long due to neuropathy
Antibiotics does not treat Crohns
There are classes of drugs
5-asa (pentasa /aspiro etc ..)
Theses are very mild. Often used first in little kids
They really don’t fix Crohns
Formula only (pediasure ) takes 6-8 weeks to work
Not 1-2 weeks
Can you get a second opinion ?
Here is a list of the drugs used to treat crohn
http://www.crohnscolitisfoundation.org/resources/types-of-medications.html
Here is how pediatric Crohns is managed
https://emedicine.medscape.com/article/928288-treatment#d1
The only antibotics would be flagyl and cipro
Flagyl makes everything including water taste like metal
My kiddo hated it
Neither can be used long due to neuropathy
crohnsinct
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What she said^
I will wait to hear if the dx is definitely Crohn's or UC and if there are any maintenance meds that have been started. You definitely need a maintenance med. EEN will only induce remission but once he starts eating again disease usually comes back. Maintenance meds take a while to kick in. EEN gets you to that point.
Meanwhile, if you are going to treat initial inflammation with Exclusive Enteral Nutrition it is true that you really need to be 100% formula. That said, one tortilla wouldn't have set him back that far so don't beat yourself up. It also may just take longer than one week of exclusive.
It must be so hard with a little one.
Hang in there. It does get better and stays there for a while and then you will hit bumps in the road but you will get better and better at handling them. :ghug:
I will wait to hear if the dx is definitely Crohn's or UC and if there are any maintenance meds that have been started. You definitely need a maintenance med. EEN will only induce remission but once he starts eating again disease usually comes back. Maintenance meds take a while to kick in. EEN gets you to that point.
Meanwhile, if you are going to treat initial inflammation with Exclusive Enteral Nutrition it is true that you really need to be 100% formula. That said, one tortilla wouldn't have set him back that far so don't beat yourself up. It also may just take longer than one week of exclusive.
It must be so hard with a little one.
Hang in there. It does get better and stays there for a while and then you will hit bumps in the road but you will get better and better at handling them. :ghug:
I think this is experimental, she said that she was Treating other 2 kids with two types of antibiotics for 3 weeks. She said that it got the kids better but not sure about remission. He has been drinking pediasure for about 3 weeks but the first 2 weeks he was also having food and this last week only pediasure. I’m reading a book that explains that there are different types of EENs? I’m not sure why his sysmptoms would get worse? But I guess that’s why crohns is so hard to manage 
Thank you so much for the links! I will review them.
Thank you so much for the links! I will review them.
Thank you so much for your message, he had an endoscopy and colonoscopy and he was diagnosed with crohns this sept. Thank you for your encouraging words.
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I have read that antibiotics are sometimes used for VEO IBD. Perhaps that is why?? I have no idea how long they are used though.
But generally, a maintenance medication is needed - especially for VEO IBD which is especially aggressive.
EEN can take longer to kick in than 1 week on 100% formula. You may need to give it a little more time. You also may need to try a different formula. Is he drinking regular Pediasure or Pediasure peptide?
There are also different kinds of formula - polymeric like Boost or Pediasure, semi-elemental, which are partially broken down and easier to digest, like Peptamen Jr and Pediasure Peptide
and finally elemental (broken down into amino acids), like Neocate Jr and Elecare.
Elemental formulas are easiest to tolerate but hardest to drink - they are the least palatable. Little kids are sometimes able to drink them. Otherwise a feeding tube is used.
Semi-elemental formulas are more palatable, but slightly harder to tolerate since they are less broken down. But most kids with Crohn's do tolerate them.
As for maintenance meds, generally they are started WITH EEN. EEN induces remission and gives the maintenance med a chance to kick in. Usually an immunomodulator or biologic is used, sometimes a combination of a biologic + immunomodulator.
Many GIs now are using the "top down" method - using the most effective drugs first to get the child into remission quickly and to prevent damage to the bowel. Usually Remicade or Humira, which are biologics, are used first, often with an immunomodulator like MTX or 6MP.
The idea is to prevent complications like fistulae, abscesses and strictures by getting the disease under control quickly. Getting the disease under control quickly is also important for growth and development - especially important since your child is so young.
Once you get your kiddo on the right combination of medications, things will get easier. Hang in there :ghug:.
But generally, a maintenance medication is needed - especially for VEO IBD which is especially aggressive.
EEN can take longer to kick in than 1 week on 100% formula. You may need to give it a little more time. You also may need to try a different formula. Is he drinking regular Pediasure or Pediasure peptide?
There are also different kinds of formula - polymeric like Boost or Pediasure, semi-elemental, which are partially broken down and easier to digest, like Peptamen Jr and Pediasure Peptide
and finally elemental (broken down into amino acids), like Neocate Jr and Elecare.
Elemental formulas are easiest to tolerate but hardest to drink - they are the least palatable. Little kids are sometimes able to drink them. Otherwise a feeding tube is used.
Semi-elemental formulas are more palatable, but slightly harder to tolerate since they are less broken down. But most kids with Crohn's do tolerate them.
As for maintenance meds, generally they are started WITH EEN. EEN induces remission and gives the maintenance med a chance to kick in. Usually an immunomodulator or biologic is used, sometimes a combination of a biologic + immunomodulator.
Many GIs now are using the "top down" method - using the most effective drugs first to get the child into remission quickly and to prevent damage to the bowel. Usually Remicade or Humira, which are biologics, are used first, often with an immunomodulator like MTX or 6MP.
The idea is to prevent complications like fistulae, abscesses and strictures by getting the disease under control quickly. Getting the disease under control quickly is also important for growth and development - especially important since your child is so young.
Once you get your kiddo on the right combination of medications, things will get easier. Hang in there :ghug:.
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Please get a second opinion quickly
Yourkiddos gut is bleeding
Experimental is generally not done with kids
Since their disease is usually more aggressive
They will have the disease longer
And you want to keep as much of the intestine as healthy as possible
Is there a large pediatric university hospital near you ?
They should have an ibd clinic
http://www.stanfordchildrens.org/en/service/gastroenterology-hepatology-nutrition
http://www.improvecarenow.org/care-centers
Yourkiddos gut is bleeding
Experimental is generally not done with kids
Since their disease is usually more aggressive
They will have the disease longer
And you want to keep as much of the intestine as healthy as possible
Is there a large pediatric university hospital near you ?
They should have an ibd clinic
http://www.stanfordchildrens.org/en/service/gastroenterology-hepatology-nutrition
http://www.improvecarenow.org/care-centers
Im in tears, I will be taking him to the hospital with a different doctor tomorrow. I’m just so concern now, how do I know if he has major damage now?? I feel like a complete idiot, im here to protect my son and can’t even do that. The doctor told us that she wanted to start with the safest treatments first. But I will listen to you ladies and get a second Opinion right away.
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He would have major damage this early
Your the mom you trust the doctors
They treat toddlers differently
So you may still get a similar treatment
But we found getting a second opinion. Helps you and whoever is the treating GI
Ds had not one but two second opinions
None of the treatments are good on paper
They just aren’t
That said once you find a treatment that works
It’s priceless
And what works isn’t going to necessarily be what you wNt or even the doctors want
It will be what your child body responds to
And everyone is different especially toddlers
You are taking the best care of your little one
Honest
Get a second opinion then you know
We constantly questioned if the med choice was right for ds the first 1-2 years
And he tried most of them
Each trial was difficult
I focused on the POSSIBLE side effects
Instead of hopping it work
We got there after finally trying remicade a year later
I was in tears and physically ill when he got the drug
Now 6 years later he is doing well with Crohns
You wouldn’t know he
Was even sick to look at him
You will get there honest
Hugs
Your the mom you trust the doctors
They treat toddlers differently
So you may still get a similar treatment
But we found getting a second opinion. Helps you and whoever is the treating GI
Ds had not one but two second opinions
None of the treatments are good on paper
They just aren’t
That said once you find a treatment that works
It’s priceless
And what works isn’t going to necessarily be what you wNt or even the doctors want
It will be what your child body responds to
And everyone is different especially toddlers
You are taking the best care of your little one
Honest
Get a second opinion then you know
We constantly questioned if the med choice was right for ds the first 1-2 years
And he tried most of them
Each trial was difficult
I focused on the POSSIBLE side effects
Instead of hopping it work
We got there after finally trying remicade a year later
I was in tears and physically ill when he got the drug
Now 6 years later he is doing well with Crohns
You wouldn’t know he
Was even sick to look at him
You will get there honest
Hugs
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- Jul 2, 2013
- Messages
- 6,750
There is a good presentation about the risks and benefits of various IBD meds: http://programs.rmei.com/CCFA139VL/
There are risks and benefits to ALL medications, even Tylenol.
I agonized over biologics for my older daughter. Spent many sleepless nights thinking about the possible side effects. But at some point the disease became scarier than the medications and so we took the plunge and put her on a biologic. She went from being in pain and miserable to being her happy self again.
Second daughter was diagnosed - same thing. I agonized all over again, even though my older daughter was doing WELL on biologics. Eventually we put my younger one on biologics and again, it greatly improved her quality of life.
I can honestly we have never regretted putting them on biologics. Or immunomodulators. Or a combination of the two. We have only ever regretted not treating them more aggressively sooner.
I also agree you need a second opinion. It can be really helpful to have a second set of eyes evaluate the situation. I would go to a big university hospital with lots of experience with pediatric IBD. I believe Boston Children's and CHOP will also do a record review, so you don't have to necessarily go there (though the trip is worth it, we have found).
Good luck!!
There are risks and benefits to ALL medications, even Tylenol.
I agonized over biologics for my older daughter. Spent many sleepless nights thinking about the possible side effects. But at some point the disease became scarier than the medications and so we took the plunge and put her on a biologic. She went from being in pain and miserable to being her happy self again.
Second daughter was diagnosed - same thing. I agonized all over again, even though my older daughter was doing WELL on biologics. Eventually we put my younger one on biologics and again, it greatly improved her quality of life.
I can honestly we have never regretted putting them on biologics. Or immunomodulators. Or a combination of the two. We have only ever regretted not treating them more aggressively sooner.
I also agree you need a second opinion. It can be really helpful to have a second set of eyes evaluate the situation. I would go to a big university hospital with lots of experience with pediatric IBD. I believe Boston Children's and CHOP will also do a record review, so you don't have to necessarily go there (though the trip is worth it, we have found).
Good luck!!
crohnsinct
Well-known member
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- Messages
- 6,469
Please don't beat yourself up! You are doing a great job. You came on here and sought out advice from other parents who have been doing this for years. It took me a long time to find this group. Up until that time, I was trusting the doctor we were seeing and feeding my kid steroids for months. I came on here and learned about EEN. When the doc suggested we add another med I asked about EEN. He wouldn't have ever suggested it. It is because of the parents here that I saved my daughter an extra year of a drug. We eventually added it but for other reasons.
Kids need pediatric docs. IBD is it's own beast. Not all Ped GI's are well versed in IBD. Very early onset IBD is even a subset of IBD and needs a GI with experience with that. Your best bet is a high volume, improve care now, university center.
I am in CA. We are now with the 4th doctor (Ct, Boston San Fran) to see our girls. We are new at Stanford but so far we are impressed. PM me if you want more info on the doc etc.
Here is another tool for you to review to understand a little more about the disease, the drugs, risks etc. At the end there is a handy decision tree that helps you see what drugs might fit your goals best. Not saying this is definitely the drug you could go in asking for but it helps to have an idea what fits.
https://ibdandme.org/#
Kids need pediatric docs. IBD is it's own beast. Not all Ped GI's are well versed in IBD. Very early onset IBD is even a subset of IBD and needs a GI with experience with that. Your best bet is a high volume, improve care now, university center.
I am in CA. We are now with the 4th doctor (Ct, Boston San Fran) to see our girls. We are new at Stanford but so far we are impressed. PM me if you want more info on the doc etc.
Here is another tool for you to review to understand a little more about the disease, the drugs, risks etc. At the end there is a handy decision tree that helps you see what drugs might fit your goals best. Not saying this is definitely the drug you could go in asking for but it helps to have an idea what fits.
https://ibdandme.org/#
It's so difficult agree with what's been said get a second opinion and specialist centre. Lucy was just turned two when she was diagnosed and it took a while to find something that worked - I think there is an element of trial and error with very young kids. We agonised over biologics but it has proven to have been the right decision to use them. Please be easier on yourself you are doing your best and your doing great.
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I just wanted to send you gentle hugs. Don’t beat yourself up. This disease is tricky and has a huge learning curve. Make sure your child is seeing a doctor that is well versed in treating very young kids with IBD. I recommend going to a large university setting even if you have to travel a little bit.
Many very young kids are tried at first on EEN but it should be an elemental formula like was mentioned above.
I hope you are able to get him in quickly for another opinion.
Many very young kids are tried at first on EEN but it should be an elemental formula like was mentioned above.
I hope you are able to get him in quickly for another opinion.
Hi! I’m very interested, I actually live in California. I’ll send you a private message. Thank you so much.
Thank you for your message, you mentioned that Your daughter was 2 when she was diagnosed. Did you ever do any of the genetic testing?
No Mari - we didn't do any that I can remember specifically - lots of bloods and tests etc. done at the time but it is all a bit of a blur!! Hope your little man is doing better and big hugs
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Flagyl and Cipro are both used for Crohns, separately and together. My son was prescribed both but neither worked.
