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Newbie Mom

A

ACMom

Hi everyone,
I'm a mother of two, my oldest Michael 14, was recently diagnosed with crohn's. (9/14/16) I'm looking to see what meds had had best success for everyone and if anyone has tried the nutritional/Enteral therapy? My son is apprehensive to give this a try, so if there are other kids using this I would love to get their input.
we are also currently looking for a generic for Pentasa, our copay for this is $80 which is high for us.
I'm so glad to have found this forum, I'm trying to absorb and learn more about this disease.

I appreciate your guidance for those that have been navigating these waters for a while now. :sign0085:
 
my little penguin

my little penguin

Moderator
Staff member
Welcome
Join the parents group here
http://www.crohnsforum.com/forumdisplay.php?f=49

Ds was Dx at age 7
Currently is age 12
Please realize 5-asa(pentasa asacol etc..)
Are only slightly better than placebo when used as monitherapy for crohns
There is no generic
Pentasa only works on the top surface of the intestines which is great for UC since that only affects the top
But crohns affects all the layers so typically not successful

Some gi like to start with it since it's the mildest
Our gi did
But most equate it to giving aspirin for a brain tumor not going to hurt too much but not going to help either
Typically kids are at least moderate to severe level (lack of growth or weight loss moves it to moderate regardless of scope images )
Tagging
Clash
Mehita
Maya142
Crohnsinct
Farmwife
Jmrogers


Ds has tried all the drugs and finally after a year found biologic work best for him
He also did een (exclusive enteral nutrition)
For 9 weeks more than a few times


Pentasa if it works as a monotherapy will do so within a month of starting it
But inflammation has to be down first

Good luck
 
Farmwife

Farmwife

HI and welcome.
My girl was dx at 3 but is now 7.5 yrs old.
Grace had tried a many drugs but ended up going on Remicade and it has been wonderful her.
She also has been on the shakes EEN/EN ever since.
I think it's worth a go if he's willing to try.
But everyone one is different.
He would still need a maintenance med when EEN is done.

How is he now?
 
A

ACMom

He is currently weaning off prednisone and getting ready to start Pentasa, he was doing pretty good no symptoms until yesterday. He had a fever/ stomach issues again. we think he could be fighting a virus since his sister has a cold right now and this had made him relapse. He is a freshman in HS and not interseted in having to go to school with a feeding tube so he right away said NO to the doctor when that was presented.
 
my little penguin

my little penguin

Moderator
Staff member
You don't need a feeding tube to do een
Ds drank peptamen jr all orally
Some kids use kids boost or pediasure
Ds currently drinks half his calories in neocate jr chocolate

Kids boost ensure pediasure are polymeric formula and easiest to drink but are whole proteins

Peptamen jr /peptide are semi elemental formula which is partially broken down proteins so it's easier on the gut to digest but still drinkable

Neocate jr ,elevate jr and eo28 splash are elemental formula which is no intact proteins broken down to amino acids so extremely easy in the gut
Very few kids can drink elemental formula orally
For ds he did not want an ng tube so decided that he would drink it
Food was not an option
We treat een like any other med it's not optional
Ds gets to chose how it goes in (orally or ng tube ) but
It goes in

A lot of high schoolers that needed ng tubes
Put them in st night to get feeds and pull them in the am
Tagging tesscorm and clash both their kiddo did this
 
Maya142

Maya142

Moderator
Staff member
Hi and welcome! My kiddo had a feeding tube for supplemental EN. She put the tube in overnight and took it out in the morning. It was really not a big deal at all!

When we were first told about it, it sounded very intimidating and my daughter (also a teen) resisted for a long time. She tried to drink the formula - we used Peptamen Jr (which does not taste good but she could tolerate). But she couldn't drink enough to maintain her weight, much less gain.

So finally we tried an NG tube. The first night was rough - her nose and throat were sore - but after that, she got used to it remarkably quickly. Now she says she will never ever go back to drinking formula and a tube is much easier.

The tube is thin and flexible - like spaghetti. She inserted it while drinking water and it slides right down! It took 10 seconds and became very easy. She just took it out in the morning before school and no one had to know! She also finally started gaining weight and feeling better.

Some kids do drink the formula - Boost and Ensure/Pediasure are most palatable. My daughter could not tolerate them, which is why we had to go to a semi-elemental formula (Peptamen Jr) and then finally an elemental formula (Neocate).

Your GI might have samples so your kiddo could try them and see if he can drink any. Our GI was very insistent about getting enough nutrition to gain and grow, and that helped my daughter accept that she needed it. She felt SO much better once she was getting formula at night.

Good luck!
 
Maya142

Maya142

Moderator
Staff member
It is expensive so you want an Rx. Some insurances will not cover it unless it is given through a tube. Others won't cover it if it's not the sole source of nutrition.

You can also buy it online but it is expensive. Sometimes the companies will ship you samples if you contact them.
 
A

ACMom

I will have to request some samples from our GI and see if he can tolerate it, unfortunately he is my picky eater, this is how we realized something was wrong because he kept loosing weight.
 
Maya142

Maya142

Moderator
Staff member
This site has a lot of good info about feeding tubes: http://www.feedingtubeawareness.org

They're really not as bad as they sound -- we dreaded one too. It ended up being much easier on my picky eater!

There are also videos on Youtube of kids inserting them.
 
D

DanceMom

We used to see GI at Nemours and we were happy there. They see quite a few IBD patients and their infusion center is fabulous (should you ever need it). My daughter does not have IBD (though we thought she did at one point in time) but I know the hospital hosted a Pediatric IBD Education Day back in September. If you contact CCFA I'm sure they could tell you about some local support groups.
 
A

ACMom

Thank you so much for sharing all this information with us.!!! I will keep you posted with our progess!

:ghug:
 
Tesscorm

Tesscorm

Moderator
Staff member
I may be a bit late here but, yes, my son used the NG tube and our experience was very similar to Maya's. My son was diagnosed just before turning 17, while inserting an NG does seem intimidating, my son learned fairly quickly and, within a week, was inserting in just a few seconds.

He did EEN for six weeks, inserting the tube at night and removing before school. Our GI allowed clear fluids which included 'foods' like clear broth, jello, popsicles, gummies/jujubes, etc. While at school, I would send him broth in a thermos so he could sit with his friends at lunch and I arranged for the school to keep a supply of freezies for him (a big hit with his friends too! ;) ) For dinner he would have another bowl of broth.

The biggest challenge was that he would get hungry by evening. As all his 'food' was ingested overnight (thru the tube), during the day, the broth, freezies, etc. weren't enough to keep the hunger away. All I can suggest for this is distraction. Although, the feeding doesn't have to be done in 'one-shot' and there's no reason the formula can't be partially ingested earlier in the evening/dinner time.

If it's a 'drinkable' formula (my son's was not, due to flavour, so NG tube was his only option), your son could also just drink half the formula during the day and have the balance overnight.

Although my son didn't drink the shakes thru EEN, he also said that if given the choice of drinking 6-8 shakes per day or using the tube, we would've chosen the tube anyway.

Good luck!!! :ghug:
 
A

ACMom

hey guys,
I wanted to update you guys on our progress, my son has been pushed back on the prednisone to 20mg since he was presenting symptons again, and started Pentasa 5oomg.
still no changes but I know it will take a little while before we can see any difference.
I was able to speak with the nutritionist about the enteral nutrition and we will be getting some samples, the good news is that the insurance will cover this 100% which is a great relief if we decide to head this route.

I have another question, what kind of vitamins and or probiotics regime are best for kids with crohns? is there anyone using any supplements or natural dietery supplements that in conjunction with meds has help.
 
my little penguin

my little penguin

Moderator
Staff member
We use vsl#3 double strength which is by prescription only
It's proven to work in UC but the jury is out still on crohns
It is expensive and most insurances don't cover it
Ds has symptoms similar to UC including rectal prolapse so our gi had us try it .
In addition to biologics and mtx ;)
 
Maya142

Maya142

Moderator
Staff member
We have used VSL #3 and now use Culturelle. My daughter also takes a multivitamin. When her vitamin D is low, we supplement. This is, of course, in addition to her other meds.

Good luck!
 
A

ACMom

my little penguin said:
We use vsl#3 double strength which is by prescription only
It's proven to work in UC but the jury is out still on crohns
It is expensive and most insurances don't cover it
Ds has symptoms similar to UC including rectal prolapse so our gi had us try it .
In addition to biologics and mtx ;)
Click to expand...
I'm sorry what's vsl stands for?
 
Mehita

Mehita

Hi there... welcome to the Forum. I have a 16 year old with Crohn's. He was dx when he was eight. He's been on Pentasa, Azathioprine, and now Remicade. Pentasa didn't do much for him, Aza wasn't strong enough, but Remicade has been working well and he's been in remission for three years. He also supplements with a teen multivitamin, a probiotic, and vitamin D.

When he was on a liquid diet, he drank Ensure and Boost mostly. Now he drinks about half a bottle with his breakfast each morning just for little extra nutrition, but he's not a big fan.

How is he handling the diagnosis? How are YOU doing?
 
A

ACMom

We had been struggling, he feels he is loosing some of his independence because I now have to ask about "everything" He is omitting things and later saying he didn't think it was important. He is upset at times and at others kind of in denial.
I dont think the prednisone is working for him. some of the symptoms are still there, we started with 40mg went down to 5mg and just started back up to 20mg this week.
I'm overwhelm and stress about the decision we are making, at least it has not been too many months without results, I'm still hopeful we can learn and teach him how to manage his symptons.
 
Mehita

Mehita

It's a tough disease. My son isn't part of anything, but others can tell you about the teen groups here and on Facebook. Lots of kids also see therapists to help them manage their feelings and stress. It's hard enough being a teen, let alone having to manage a chronic disease as well.

Three things on the meds... 1) sometimes the drop in pred at the 15-20mg range needs to be slower. I have no idea why, but my son always went from 15 down to five over a longer taper to avoid symptoms coming back. Some kids have to go down by 2.5mg versus 5mg also. 2) It's going to take Pentasa awhile to work. Usually there is more overlap with pred and the new maintenance med to allow the maintenance med to get to full strength. You might be experiencing that. 3) Generally speaking, Pentasa doesn't always work well for Crohn's. It helps with the top layer of the intestinal wall, but because Crohn's is IN the layers, Pentasa (and the other 5ASA's) sometimes isn't enough.

The decisions, especially with the meds, are so hard. Just educate yourself, have some faith in your doctor and his or her experiences with the disease, and breathe. It may take time, but hopefully you'll find the magic combination of things he needs to achieve and retain remission.
 
A

ACMom

thanks! I think you might be on to something with that, I also had a talk with with about being totally honest and not just telling me what I want to hear. I totally did the bowel chart for him (printed lol) so that we are on the same page! my doctor wanted to started him on remicade but we were feeling that he was being too proactive. when the insurance said we needed to try something milder first in order to cover that I felt a bit relief because I was afraid of getting him started on biologic right away without trying anything else.
 
my little penguin

my little penguin

Moderator
Staff member
Honestly there is no such thing as too proactive
The goal is to keep as much of the intestine as healthy as long as possible
Kids have this disease for upwards of 60 years which can cause a lot of damage .
Crohns kids have a 75% chance of having surgery within 5 years of Dx .
And once you have surgery the odds increase after that for more surgery
Not long ago they only had steriods steriods and more steriods to give kids for this evil
Disease .
Which resulted in stunted growth osteoporosis cateracts glaucoma diabetes and Cushing syndrome plus lots of surgery .
5-asa are not approved for use in Crohn's disease because they have been proven to be effective .
If your doctor wanted remicade which is highly effective and recommended for top down theory -I am trying to understand how it was agreed on here pentasa which is basically useless IMO for crohns . Immunosuppressants are the middle ground such as 6-mp mtx and Aza . Most insurance's will cover those prior to biolgics since they are old school therefore cheap .
The longer the disease is not under control the more damage than can be done and not reversed
Many kids on here have had to have resections (following the 75% stats -Mehita and Clash vtfamily ) and all parents want the mild drugs to work or even no drugs such as diet alone i
But childhood crohns is aggressive and evil so each one of us has had to agonize with the decision that the disease is far worse than the risk of the meds.
Doctors recommend what they feel has the more benefits taking the med vs the risk

Ds took pentasa for a month back when I knew nothing of meds and was scared of pentasa .
Continued to get sicker
Tried een and 6-mp for three months
Liver enzymes went up
Added allopurinol and lowered 6-mp plus pred
4-5 months of that with vomiting and feeling bad
Liver enzymes still went up everytime 6-mp was raised to therapeutic levels
Rescoped still damaged
Switched to mtx plus pred
Every time we lowered pred more symptoms and vasculitis
Tried mtx for 3 more months
Finally gave in and agreed to remicade
Dropped pred and mtx
Suddenly 7 weeks after starting remicade I had a new kid back
I didn't realize how sick he truly was until he wasn't sick

It's never easy but please fear the disease not the meds
Newer and better options are becoming available and hopefully soon it won't be as hard to chose meds but keeping the intestine healthy until then is the goal


One last thing crohns in kids unlike adults tends to spread during the first 10 years from Dx
 
Jmrogers4

Jmrogers4

Welcome sorry I'm late to the party. My son was diagnosed at 10 he is now 17. We have done the whole medicine route as well. Thought we had things under control with Imuran but really struggled with lack of growth and weight gain he really did not grow for about 3 years. At 14 he was 5' and about 80 pounds. He started on remicade at that point (3 years in January) and has been in remission ever since (he is now over 6' and about 140 pounds).
He did do EEN his freshman year as a last resort before starting on remicade. He has done it twice and drank the formulas each time (pediasure Peptide). I will say that it is a lot of clock watching and timing to make sure you get them all in.
MLP is right in that it tends to hit pediatric harder and faster than adults. My husband/his father also has Crohn's disease and while on Pentasa he was hospitalized several times (there were not a lot of medication options when he was diagnosed 25 years ago). He was switched to Imuran about 13-14 years ago and has been in remission but it just wasn't enough for my son.
 
Mehita

Mehita

I'm in the midst of reading insurance fine print as our medical insurance is changing at the beginning of the year. One thing I saw is that for us, Remicade isn't covered until "other avenues have been exhausted". This is something to consider. We would have been denied had DS not tried Pentasa and Aza first. Fingers crossed we'll have no issues come January, but I'm putting my notes together now.

Has your son hit puberty yet? If not, getting him healthy as fast as you can is important so that he can experience puberty normally. My son missed out and is now very small. Not true for all kids, but I do wish we had agreed to Remicade about two years sooner than we did. He was sick (and had a resection) during his middle school years.
 
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