Question about Pentasa

[Faithsg]

My son has crohns colitis and has been in pain a month. He's on remicade every4 weeks and methotrexate 3 pills 1x a week. He had colonoscopy/endoscopy last week They saw inflammation by his rectum and put him on Pentasa today 4 huge pills and has was diagnosed with EOE and needs a steroid inhaler. Today was my sons first day back at school in a month he had a nice day. Once he saw the Pentasa he flipped out. He's 11 got diagnosed 18 months ago. He's had a rough road c diff twice lots of hospital visits etc. I know he needs this medicine but he took one pill and can't the pills are too much. Any suggestions? Ideas? I messaged the doctor begging for something else tonight. My son has shut down sad in his room alone all night. I feel terrible for him. I know it's a combo of the huge pill and another added diagnosis. I'm new and only posted once but please know I really appreciate and ideas suggestions and help.

Faith

 

[Maya142]

I believe you can open the pills into applesauce.

Is he able to take other pills? Is it just the size of Pentasa? If it's the size, I'd ask your doctor if you can just open the capsules.

If it's all pills, then there are methods to learn how to swallow pills. Some parents start small - like with mini m&m's and then work their way up - regular m&m's, then something slightly bigger etc.

I'll tag my little penguin, she might have some ideas for you.

Good luck!

 

[Faithsg]

He can swallow pills like flagyl and vancomycin Tylenol and smaller this pill is huge and his throats hurts from the EOE. I think he can swallow the size freaked him out he's not an easy kid but has come a long way since being diagnosed. Thank you!

 

[Maya142]

I'd just check with your doctor or pharmacist - I'm pretty sure we were told you can open the capsules. They are pretty big.

It's also possible that as his EOE gets better, he'll learn how to swallow them later. I wouldn't worry too much right now.

I'm sorry to hear he has another new diagnosis. Poor kiddo - he has had a tough year. I hope things get better soon.

 

[Faithsg]

Thank you!

 

[my little penguin]

Pentasa can be opened into applesauce
But the blue coating is what makes sure the white beads survive the stomach and get distributed to the right part of the intestine.
That said pentasa is very mild and only acts like a cream on the top most surface of the intestine - Crohns goes through all layers .

You said he takes mtx pills -some do better with mtx injections since absorption is not an issue from a disease standpoint

That said Ds does great on the pills in terms of side effects but gets very sick on the injections others have the opposite

EoE - typically is due to increased eosinophils without a known inflammatory disease.
Crohns can and does cause increased eos in the GI tract
Most EoE is treated with diet (top 6 free or oral steroids ) some need both
Formula only can be used for both Crohns and EoE until things calm down similar to pred

There is a group of parents solely for EoE
Here
https://community.kidswithfoodallergies.org/forum/gastrointestinal-disorders


And apfed has a lot of good resources
https://apfed.org

Can you get a second opinion at one of the top three big ibd centered in the US?

Boston children's
Children of Philadelphia
Cincinnati children's
Fwiw Cincy has the center for eosinophilic disease which is one of the top in the country as well

Refusing to take the pills
Does he see a psychologist
Most GI dept have a psychologist for medical coping which does help ALOT
Dealing with all of it is a lot for adults let alone kids
Having someone who isn't mom or dad to vent to is important

Also it's very important to give kids a sense of control since most of the poking etc is stufff they are told will be done and they don't get a choice

So Ds gets to chose where and what order pills are taken in
Where he gets his shots (humirax2 week) in his leg etc....

Also after emptying a capsule applesauce put the blue coating in water
Show your kiddo how thin it gets with water
Sometimes the shear visual size ....
If he is having trouble with choking feeling or things getting stuck due to EoE
Then it may be harder for him
Most kids with EoE feel like they are choking especially on meat due to the strictures of the esophagus

Good luck

 

[Faithsg]

Thanks for all your suggestions. He is being followed by Dr Brown at Luries Hospital Chicago. Do you recommend a second opinion for the EOE at other hospitals or his overall crohns/ colitis? His records were revised by Dr Rubin UIC his dads doctor but not the recent diagnosis. Thank you

 

[my little penguin]

Highly recommend going to cchmc (Cincy)
They are top in the. Nation for both disorders
Call the GI intake dept they can help quickly

 

[Faithsg]

Do you think my son is not getting the right medicines? I have been happy with his doctors. I am not opposed to getting another opinion but I'm confused as to why. Is Pentasa bad? His crohns is 95% resolved on remicade. He's on methotrexate and that's working. Do you think Pentasa is the wrong move? Do you think the other hospital is better for EOE? Luries Childtens has an EOE clinic. I will do whatever I need for my son but I think he's getting typical treatment. He is upset and refusing the Pentasa. He definitely needs a child psychologist which I'm working on. Should I ask for anything else fir him?

 

[my little penguin]

When you kid is conplicated which two rare diagnoses (Crohns and EoE )
Then a second set of eyes ata top place where they see lots of cases similar to your son helps
Even if they just confirm yep he has both things
And yep these meds are exactly we recommend

Ds is complicated as well and we have gotten two second opinions at cchmc

He has stayed with the same GI since dx
And his GI loves getting a fresh set of eyes since Ds is complicated

Pentasa is fine
Very very mild drug and remicade plus mtx is standard
But they did find inflammation on his scopes
While on remicade and mtx

Second set of fresh eyes just has been very helpful to us

We never ever want to actually change GI docs

 

[Maya142]

Pentasa won't help a whole lot but it won't hurt him. It's really a pretty mild drug.

I agree that a psychologist is a good idea. My daughter was VERY against seeing a psychologist but her GI insisted. It has made a world of difference and my daughter actually now looks forward to her appts. and reminds me to make them! We see a psychologist in the IBD clinic who has lots of experience working with chronically ill kids.

A second set of eyes is often helpful, especially with a new diagnosis. It doesn't mean your GI is doing anything wrong, or that you want to leave your GI. It's just confirmation that your kiddo is on the right track, plus fresh ideas, if necessary.

 

[Faithsg]

Thank you! Still searching for a psychogist that takes our insurance no luck. My son is terribly angry and not feeling well today. I appreciate all the advice.

 

[my little penguin]

Your ds GI dept would be able to have one on staff
Or one they could recommend
They need some who is used to medically complicated kids
Since the pain is very real
Also reach out to your child's hospitals child life
They have programs as well when getting procedures or clinic visits

There is also beads of courage program
Most hospitals do
It helps
http://www.beadsofcourage.org



Buzzy bee helps for iv infusions and blood draws
Ask the GI to prescribe Elma cream
It numbs the arm so they don't feel stick for ibd or blood draws
No need to feel that dreaded pinch if they don't have too
Contact ccfa
They can connect you with other parents in your area so your child can play (not talking Crohns ) with someone who knows what's it's like to be sick
That help

Ccfa has camp oasis for kids with Crohns
Most enjoy that (my kiddo doesn't like camping or roughing it so not a good idea for him)
There is also courageous kids camp
Which is a lot less roughing it style (with family weekends all free )
http://www.courageouskids.org



https://www.buzzyhelps.com

 

[Maya142]

Sending hugs! I definitely agree that you should contact your GI - they probably have someone they can recommend. It does take time, but your kiddo will learn to live with this. My daughter struggled a lot with anxiety at first but has learned how to deal with it.

Some hospitals also have support groups for parents and kids - I know ours has one for kids and one for teens.

Parents here say that the CCFA camps really help and kids absolutely love them.

 

[Faithsg]

Thank you! The hospital is an hour from our house because we have to go into the city. He's fine with blood draws and infusions they are nice get him the first time and use a jtip. The hospital is wonderful but the satilites closer to our home don't offer the psychologist or nutrition. He's in 6th grade already misses lots of school. He just told me the pentasa he took yesterday hurt him and he doesn't think he should take it. He is better with pokes than pills. Thanks for the wonderful advice I am looking at everything! He is taking the EOE meds so I'm happy one end of his body will start to feel better. The Pentasa is for 5% of his colon that's inflamed but even though my son was in pain he said the pill made him worse.

 

[my little penguin]

Most of the psychologist who have experience with medically complicated kids will be associated with the kiddie hospital
I get you don't want to miss more school
But you may not need to make the trip often after a while
Also Ds was "fine" with pokes and iv etc...
But after a while (he has had this 5 years ) it starts to get to them
No one wants to be a pin cushion
His one doc strongly suggested Emma cream for every poke
Stating if it doesn't have hurt -then make it so it doesn't
That yes he can handle it but that non one should have to feel that many pokes (bloodwork every two months sometimes as often as 3 times a week plus multiple hospital stays and infusion iv etc...)


Just like you wouldn't want some independent GI -you want a ped GI at a good kiddie hospital
You want the same for the psychologist at least until he gets skills to help cope.
As far as the pills helping
Pentasa takes 30 days to "work" so no way to know this soon

 

[Faithsg]

My son is still refusing the Pentasa. I'm so sad. He went to the Psychologist today but nothing happens overnight. He won't take it solo or in anything. He's almost 12, he feels like it didn't help him and he just flat out refuses. I look at him today pale and tired and just pray he will come to his senses and take the pills or granules in yogurt. I begged the doctor for another medicine but I have not been given one yet. This child has been through so much and goes through so much he just has put his foot down and dug it in deep. I'm at a loss, I've tried everything.