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Treatment of Crohn´s our dilemma!

My daughter M is 10 and she was diagnosed with Crohn's Disease in february 2020

She has been perfectly healthy except a couple of times the two previous years complaining about some pain in the stomach and felt tired without energy.
When receiving the diagnosis she started on a EEN. unexpected this resulted in a very elevated value of fecal calprotectin. More than 2.500. We found out the suggested drinking diet contained a lot of sugar and milk/soya ingredients she was allergic to. We then changed to Elemental and Neocate and calprotein was reduced to app. 450. The same level as before diet.
All the time she has felt healthy. However, EEN is clearly a mental stress for her.
Her diet now is about 60-70% food according to an "Israel diet", consisting of rice, potatoes, fish and chicken++ and the rest of Elemental. The challenge with this diet is limited food selection, furthermore it is demanding to keep up the weight.
We know the diet will probably not give M a endoscopic remission and if not to treat the disease with medicine (just go on with the diet and stay over a longer period with calprotein values app 200-400) will lead to worsening of the situation.
Our doctor suggests Entocort + AZA.

Our dilemma is then:
1. Stay on a demanding diet with uncertain outcome and maybe highest possibility of getting the Crohn`s disease worsening.
2. Start using medicines with all known side effects.

We have also read a lot about biological medicine. We maybe think this represent the best alternative in the present situation.
However our doctor insist in starting with azathioprine according to the traditional medical approximation. As we understand this medicine leads to several adverse side effects we are skeptical to this medical treatment.
We feel really uncertain and don't know what to do. All good advice and comments are appriciated!

my little penguin

Staff member
Welcome !!!
Tough being dx
Ds was dx at 7 (now 16)
So choosing the right path is hard
Everyone responds differently
So while you may research abd research and find the BEST treatment for your child
Your child body may have a different idea .

Een is typically only done for 6-8 weeks while you wait for a maintenance med to kick in
Depending on what country your located in depends on treatment options available

in the US most options are available but insurance can play a big factor as to what drugs must be tried first and failed prior to starting biologics.

Een while effective takes a while to work and must be done at 80-100% for at least 6 weeks preferably 9
Some still need steriods because of disease burden

most ped Gi don’t use aza or Imuran anymore in boys
They prefer mtx instead
Others like aza for girls due to birth defects from mtx

some need multiple meds and multiple diet options at the same time

side effects are potential side effects for drugs
Not everyone gets the same side effects and some get none

don’t get tied to one treatment
Odds out as badly as you didn’t want treatment xyz and it starts to work suddenly it’s your favorite thing until it stops working and now the scary new drug is the option

Ds has tried and failed many drugs
Other drugs worked for years
It just depends

Ds is currently on Stelara/methotrexate
Has been for two plus years
After 5 years on humira

If you don’t agree with your Gi please get a fresh set of eyes at another ped university hospital that can help