So diet is controversial
Because some believe if you only eat certain things (paleo avoid sugars etc...) abd don’t take any meds you are magically fixed ......
that said een (exclusive enteral nutrition) is formula only (polymeric ,semi elemental, and elemental-ensure/boost, peptamen, vionex) is peer reviewed and as effective as steriods in crohns in kids
you drink formula only for 6-8 weeks while waiting for your maintenance meds to kick in .
Sometimes een is done with steriods to help healing and get weight gain
other times een issued As supplemental in addition to solid food this helps the most with weight gain
If they are on steriods and a maintenance med .
Ds did een instead of steriods at dx (age 7) but still needed steriods many times after that
But he has drank some sorta of shake (semi elemental (peptamen jr ) for years . Switched to elemental (neocate jr) for a few more years .
Past year he switched to carnation instant breakfast shakes
these plus meds have let him grow to 5’10” and 158 lbs. he just turned 17.
he has tried fodmaps, free of everything diet (sugar free , gluten free etc..) , cced ( crohns exclusive diet) , anti inflammatory diet
and maybe a few more over the past 10 years
Cced principle foods (eggs, potatoes ,chicken , turkey , limit to whole grains , certain veggies etc..) he still has as part of his diet
right now they want him to avoid beef (red meat), abd pork
Sticks to mostly Mediterranean style diet as much as possible /Whole Foods organic as much as possible which is what His Gi recommends
he never did scd since kids tend to lose weight on that . He was underweight at dx And he has allergies to nuts and fish so that makes it harder
16 is a tough age
Remicade
Pros
more compliance
Since they can up the dose when he gains weight so he is still getting 5 mg/kg
Blood draws are done at infusions so no separate trip
Day to rest , gets weight taken and medical staff can lay eyes on him if in an infusion center
Medical staff gives the iv /med vs him or parents
cons
He has to be close to an infusion center at every 4-8 weeks or home health come to him in the dorm (college )
so planning trips has to happen around it
Scarring on the veins from ivs every 8 weeks adds up over the years and makes Hospital ivs
Harder to get
Unfortunately blood draws every three months for years also has the same effect ..so no getting around it
Ds has too much scar tissue after 10 years abd he was only on remicade for 8 months
The rest of the scar tissue was from blood draws
Humira
Pros
Portable
They will ship it to ups anywhere in the country so even if your on vacation you can pick it up.
You can carry it with you on a trip or plane woth a cooler .
It comes in a pen or syringe
Pen is easier for some to give themselves a shot (similar to epi pen spring loaded )
But spring loaded so it can misfire and may be more painful
Syringe you control the speed less pain per ds
humira and college ....
Cons
Your or your child must give himself an injection every two weeks
He may get welts or selling at the injection site
As he gains weight (gets healthier ) the dose he was given goes down - so at 110 lbs he gets 40 mg syringe every two weeks
Say He gains 50 lbs. he would still only get 40 mg at 160 lbs .
As Ds grew and gained weight they had to increase the frequency of his humira since they couldn’t increase the dosage
There is only one adult dose
Frequency can be every 14 days down to every 5 days .
It may not be a choice just depends on insurance approval
So require you fail the cheaper drugs first
So require you start /fail immunosuppressants (aza or mtx first )
Ours required Ds fail each tier one by one
5-asa
Immunosuppressants
Then cheaper biologics
so they would not cover Stelara until he had failed
The cheaper biologics of humira and remicade
Some require failure of one of the two above
Some state which one is used first (remicade or humira )
good luck
best success Ds had for weight gain was steriods plus remicade plus 3 peptamen jr a day
Gained 30 lbs .
He had not gained any weight at all from age 5 to age 7 .
gained 30 lbs at age 8
