Newbies Seeking Advice Input & Opinions

[Pam.estella]

Hello to all Parents,
I've read through several threads, but this is my first post. Our youngest son was diagnosed 11/2018. All of his bloodwork was unremarkable but his Calprotectin was 998. He had a scope and MRI done at that time and the MRI showed an area of (ileal) "narrowing" that they think is possibly a stricture, but couldn't say for sure until his inflammation was down. He started & did EEN for 8 weeks and then a round of budesonide. He also tried a salicylate (can't remember which one), but had an allergic reaction (rash) to this. His Calprotectin dropped to 500 or so and then we started strict SCD. It dropped to 217 but then up in the 300 's a month later so the doctor started him on a 7 month course of budesonide & vancomycin. We at that point were hoping to avoid immune altering drugs because we fall in the camp of this is likely infectious. (Yes I have sent his blood to Otakaro with positive results) Then his doctor moved, and his new doctor does not agree with the steroid antibiotic route, but allowed him to finish the 7 month course. His calprotectin during that time bounced from 198-mid 200's. Toward the end of his 7 months he coincidentally got a case of cellulitis from a bug bite and had to take a weeks worth of Cephalexin. Then when we checked his Calprotectin it had fallen below 50. That was in April of this year. Now his latest is back up to 350 and his doctor has said she wants to proceed on a different path, that she doesn't believe the diet is enough to control his disease. He has been and remains symptom free since we started the diet, and all of his bloodwork remains normal with the exception of low Vit D. He was taking a supplement but isn't consistent with this. We are starting the process to schedule a follow up MRI and scope if necessary, and hesitant to do this during COVID but don't feel like we should move forward without that information. He does have 3 small areas of Psoraisis including on one of his eyelids. (Sigh...) Interestingly his psoriasis also completely cleared with the Cephalexin. His doctor has said she is willing to try a short course of Cephalexin to see if it drops his calprotectin again, but doesn't feel like this is a long term option. It would be for informational purposes only, and hopefully convince her that there is an infectious component. We do understand that antibiotics are not without their own risks, but it seems like the benefit of that knowledge could outweigh the risks. Our concerns aren't only with the side effects of biologics or immunosuppressing drugs but also with the thought that isn't symptom free one of the main goals? We are also concerned that at the age of 17 we don't want him to run out of pharmaceutical options as an adult. Our understanding is that eventually his body will no longer accept or use these drugs before needing to switch or change, and that's if they even work. Are these understandings accurate or are we completely off base here? He has grown and while he did lose weight at the beginning of starting the diet, he has gained it back and also grown in height. She feels he is likely done growing in height but he is close to his older brother and as tall as his dad, so we don't feel like his growth was inhibited. We are also considering trying some acupuncture since it seems harmless. I should mention that I was adopted, but have learned that my biological mother had Crohn's. I never got to meet her before she passed at the very young age of 52. Any input or advice from more experienced people would be greatly appreciated. Thanks for taking the time to read

 

[my little penguin]

The goal is complete mucosal healing.
as far as running out of meds
That really isn’t likely to happen
Given your child is 17 same age as my kiddo
Mine was dx 10 years ago
He is on his third biologic
However
The first biologic remicade was stopped due to an allergic reaction . Ds is an allergic kiddo abd has reacted to multiple foods /drugs /animals

second biologic humira lasted 5 plus years . We needed to stop due to a non crohns surgery and when restarted it no longer worked
Without that stop he would still be on humira

he currently on Stelara and has been for 3 plus years -no issues

some folks are on remicade for more than 10 plus years
There are plenty of new biologics in the pipeline
Saving biolgics as a last resort doesn’t alter the fact most kiddos who do not take biologics have a 75% chance of having surgery 5 years from dx
With biologics that reduces to 30-40-%
That was a few years ago
The numbers are changing

The only crowd who have to worry about running out of options are the little kids
They don’t /won’t approve the newer biologics for kids under 12
So they only have two to three options

there are multiple options that are newer in the pipeline
Each set goes a little bit further

our goal for ds was to have pink healthy intestine with no signs of inflammation even microscopic
This was achieved on humira (never scoped on remicade )

symptom free does not mean damage isn’t being done
For some fecal cal in 100 is flaring
Others just mild irritation
Without scopes at time of fecal cal there is no way to know

the only way to know if your child is done growing is a hand X-ray of the wrist .
One kiddo may be taller than their siblings
Crohns kids tend to have a longer (delayed) growth window due to inflammation and steroid use

My non ibd kiddo is still growing at 19 as well as my crohns kiddo
Most boys grow well in 19 years old

 

[Pangolin]

I'm a believer in antibiotics, and we've also noticed positive results from them. My guess is the cephalexin was really helping. Oral vancomycin may or may not be helpful but doesn't get absorbed and so can't kill any bacteria that may already be in the tissues. The most positive results we've seen have been from EEN, particularly with a semi-elemental formula. Budesonide is not a great long-term option, as you probably know.

 

[Catherine]

My daughter was dx with crohn as 16 years. She had very few symptoms of active dx and fecal calprectin was never under 200.

Aged 24 she had 60 cm bowel removed due to Crohn's disease. Untreated Crohn's disease is very serious.

 

[WindingRs]

The only crowd who have to worry about running out of options are the little kids
They don’t /won’t approve the newer biologics for kids under 12
So they only have two to three options

Hello MLP,
Do you know if kiddos over 12 years can start with Stelara or Entyvio? Or do they have to try and fail Remicade and Humira first?

 

[my little penguin]

@WindingRs
It really depends on insurance
Most require you use the cheaper biologics first
Humira (cheapest ) (3-4 K)
Then remicade (8-10k but it’s been along time )
Entyvio/Stelara are both extremely expensive (Stelara is 22-32k per shot )

second thing
Stelara is only fda approved at crohns dose (90 mg every 8 weeks ) for 18 years old and up
It’s approved or getting approval for 12 and up for psoriasis/PsA at 45 mg every 12 weeks

it took a very very long time to get approval for insurance for ds at 13
After reacting or failing remicade /humira .

I will say it is easier with a growing child to have remicade
It handles the whole gut and dosing is weight based
5 mg/kg up to 10mg/kg which is important when puberty hits . These kids burn through biologics quickly when they become gaining and growing machines
With humira /Stelara there is no changing dosing
Only frequency
Ds went from humira every 2 weeks for 1 -2 years
Then puberty hits (around 11-12 )
Then every 10 days for a year
Then every 7 days for a year
Then every 5 days for a year
The dose of 40 mg was the same despite Ds having gained 70 lbs

so please consider this
Add in remicade takes 6 weeks to work
Humira 8-12 weeks to work
Stelara 8 months to work (needs steriods as a bridge while waiting )
Entyvio 12 months to work

 

[WindingRs]

Thanks much for the info. I didn’t know Humira shots can go down to every 5 days.

 

[Pam.estella]

Thank you all for your input, we are scheduled for an appointment with the Doctor on the 15th to discuss our options, and waiting to hear back from insurance before scheduling the MRI.

 

[Pam.estella]

Hello MLP,
Do you know if kiddos over 12 years can start with Stelara or Entyvio? Or do they have to try and fail Remicade and Humira first?

I'm a believer in antibiotics, and we've also noticed positive results from them. My guess is the cephalexin was really helping. Oral vancomycin may or may not be helpful but doesn't get absorbed and so can't kill any bacteria that may already be in the tissues. The most positive results we've seen have been from EEN, particularly with a semi-elemental formula. Budesonide is not a great long-term option, as you probably know.

So how does EEN work for you? Is it an 8 week course and then back to a standard diet, or are you on a restricted diet as well? I just read about the CDED exclusion diet last night with PEN and it sounds interesting as well.

 

[my little penguin]

So een is only effective while your on 100% een with no solid foods
Normally this is for 6-8 weeks while your waiting fir the maintenance medicine to kick in .
Then most stop een and go back to regular food since een is very restrictive and has social /emotional consequences for kids .

granted when Ds started the journey at 7
I was all about nothing but een -no side effects
No scary drugs
I thought he could stay on that forever
10 years later ....
I now realize why een is only for 6-8 weeks
It’s extremely difficult
Easier to require a young child to do it since most don’t realize they have a choice
PreTeens and teens have their own opinions on what they will and won’t do
If you don’t have their buy in
You won’t get anywhere with een

chronically ill child/teen you pick your battles since they have to live with this their whole lives and they get to have a say (assent) and later complete control (consent) of all their medical decisions

hard to imagine at 12
Harder to accept with a 17 year old

pen just means supplemental nutrition shakes and regular food

cced - Ds did this for a while when it was first reported - extremely limiting -all food must be made from scratch . Since no frozen just fresh
Did it help Ds ... not really
Does he include a lot of the approved foods in his diet (chicken , eggplant ,tomatoes,eggs ) definitely
They make up the majority of his diet
But his Gi team has seen better results with Mediterranean diets so that is what they recommend with as many Whole Foods as possible

remember there is no right or wrong path
The only right path is the one that works for your child’s body
Abd unfortunately even if the medicine or diet looks great on paper tour child’s body may decide a different drug and diet may work better .