Crohn's Disease Forum » Parents of Kids with IBD » Feeling defeated today, please tell me it will get better


12-08-2017, 06:37 PM   #1
Mari101
 
Join Date: Nov 2017
Location: San Diego, California
Feeling defeated today, please tell me it will get better

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 doesnít 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. Iím new to this journey and I feel so hopeless and depressed. Any suggestions?
12-08-2017, 07:38 PM   #2
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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 donít 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.o...dications.html


Here is how pediatric Crohns is managed
https://emedicine.medscape.com/artic...8-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
__________________
DS - -Crohn's -Stelara -mtx
12-08-2017, 07:49 PM   #3
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
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.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-08-2017, 08:39 PM   #4
Mari101
 
Join Date: Nov 2017
Location: San Diego, California
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. Iím reading a book that explains that there are different types of EENs? Iím not sure why his sysmptoms would get worse? But I guess thatís why crohns is so hard to manage

Thank you so much for the links! I will review them.


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 donít 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.o...dications.html


Here is how pediatric Crohns is managed
https://emedicine.medscape.com/artic...8-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
12-08-2017, 08:42 PM   #5
Mari101
 
Join Date: Nov 2017
Location: San Diego, California
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.

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.
12-08-2017, 09:06 PM   #6
Maya142
Forum Monitor
 
Maya142's Avatar
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 .
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-08-2017, 09:14 PM   #7
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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/...logy-nutrition

http://www.improvecarenow.org/care-centers
12-08-2017, 10:15 PM   #8
Mari101
 
Join Date: Nov 2017
Location: San Diego, California
Im in tears, I will be taking him to the hospital with a different doctor tomorrow. Iím 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 canít 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.
12-08-2017, 11:44 PM   #9
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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 arenít
That said once you find a treatment that works
Itís priceless
And what works isnít 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 wouldnít know he
Was even sick to look at him
You will get there honest

Hugs
12-08-2017, 11:55 PM   #10
Maya142
Forum Monitor
 
Maya142's Avatar
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!!
12-09-2017, 01:21 AM   #11
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
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/#
12-18-2017, 06:46 AM   #12
polly13
Senior Member
 
polly13's Avatar
 
Join Date: Jan 2012
Location: Tipperary, Ireland

My Support Groups:
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.
12-18-2017, 09:52 PM   #13
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
I just wanted to send you gentle hugs. Donít 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.
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
12-20-2017, 03:10 PM   #14
Mari101
 
Join Date: Nov 2017
Location: San Diego, California
Thank you so much ladies, it means so much. This is a horrible road. I wanted to ask those that have little kids with ibd if you have done the genetic testing or if you are planning to do it.
12-20-2017, 03:10 PM   #15
Mari101
 
Join Date: Nov 2017
Location: San Diego, California
Thank you so much

I just wanted to send you gentle hugs. Donít 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.
12-20-2017, 03:22 PM   #16
Mari101
 
Join Date: Nov 2017
Location: San Diego, California
Hi! Iím very interested, I actually live in California. Iíll send you a private message. Thank you so much.

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/#
12-20-2017, 03:31 PM   #17
Mari101
 
Join Date: Nov 2017
Location: San Diego, California
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?

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.
12-21-2017, 05:56 AM   #18
polly13
Senior Member
 
polly13's Avatar
 
Join Date: Jan 2012
Location: Tipperary, Ireland

My Support Groups:
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
01-06-2018, 01:06 PM   #19
hauermich
 
hauermich's Avatar
 
Join Date: Dec 2016
Location: Middlesex, New Jersey
Flagyl and Cipro are both used for Crohns, separately and together. My son was prescribed both but neither worked.


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 donít 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.o...dications.html


Here is how pediatric Crohns is managed
https://emedicine.medscape.com/artic...8-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
01-06-2018, 10:00 PM   #20
Carolina*
 
Join Date: Oct 2017
Location: North Carolina
How are things going Mari101?
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Feeling defeated today, please tell me it will get better
Thread Tools


All times are GMT -5. The time now is 01:12 PM.
Copyright 2006-2017 Crohnsforum.com