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We've hit a wall - please help!

My 9 year old son has been doing so well with EEN, drinking up to 10 drinks a day and feeling quite good. We started 6mp last Monday, and for the last 3 days he has been feeling sick, not wanting to drink the drinks (gone from 10 or more a day down to 5) and generally has become teary and upset at the entire thing....as have I.

The doctor said we needed to start the meds during EEN, is that the usual thing that happens? Or should we have finished the 8 weeks first then started the meds?

We are going to hospital on Nov 7 for an iron infusion, bloods to check the meds and another pillcam scope to see if this liquid diet has helped...that will be 10 weeks in total..I'm really worried he will start losing weight, and all the good progress he has made will be to no avail...

If he can't keep the drinks down, what next???? I feel so totally sick about this.....thanks xx

PS I have felt really strong and positive but now it's making me realise what a horrible thing Crohns is, and how he is suffering....it's so not fair..

Hope your babes are doing okay xxx


Super Moderator
As you would be aware, from being on this forum, that the protocol for EEN does differ from doctor to doctor. There are those that are using it in conjunction with immunosuppressants and those that aren't. As a general rule of thumb EEN is used as an alternative to steroids, which ever method is used it is done to bring the disease under control and therefore into remission. It is not considered a long term treatment for disease control just as steroids aren't, therefore something else must be brought into the mix to keep the disease in check and that thing is what is referred to as maintenance medication.
It is used in much the same way as medication is used for say an asthmatic. You have Ventolin for acute attacks but use a different type of puffer daily or twice daily to keep your airways settled and so hopefully negate the need for Ventolin. remission and then control is also the standard regime for Crohn's.

The thing with the immunosuppressants is they take at least 3 months to become fully therapeutic so are started whilst still on initial treatment. That way as EEN or steroids are withdrawn the immunosuppressant takes over.

Nausea is not an uncommon side effect of 6mp and most users say it does abate after a couple of weeks or so. To alleviate the problem many take their medication at bedtime or, depending on the dose, split it and have half in the morning and half at night.

When is C taking his meds and what dose and presentation is it?

Dusty. xxx
Sorry to hear things aren't going too well. This disease sucks as you always wait for the other shoe to drop. Sorry I have no idea what the usual side effects are for 6mp as we haven't started yet - unfortunately we probably will soon. I would imagine he would feel yucky for a couple of weeks till the body adjusts to the medication - remember it will be affecting everything.
Just wondering when I read your post saying he goes for bloods on November 7th. When my son has to start 6mp we were told that his blood tests will be weekly for a month then twice weekly for a month and then monthly then every 3 months. They monitor it very carefully.
I hope your son feels better soon. Maybe they could give you a med to take away his nausea?
If it's nausea causing the withdrawal of food, I wouldn't be surprised.
Grace was on a different med and was nausea's for the first week and not eating.
I was told next time to tell the doc and he can give meds to help with that, even if it's just short term.
That may help him.

;)Hugs from across the pond!:heart:
Hi farmerswifey, sorry to hear about yr son not feeling to good. My 9 year old had been on 6mp from the very beginning and i was very concerned about the sickness. Someone on this forum advised me to give it to Kian at bedtime and i must say he has had no sickness at all and thats 2 and half years he been on his meds. good luck and keep us posted. xx
Thanks lovelies, he has been taking the tablet at around 5pm, so I'm going to change the time to just before bed...he is having half at 50mg tablet, so 25, just because his weight is so low...

Oh it's such a frustrating thing, he was doing so well, and now...well it's so uncertain..

@ Dusty, I'm going to show my husband your comment, because this explains exactly what he has been asking..thank you so much everyone, I'd be lost without you all xxxxx

my little penguin

Staff member
Second or third the bedtime thing.
Nausea was a problem for us ( still is not a med related issue )
When we broke up the shakes 2 at a time similar to breakfast lunch dinner that helped DS .
10 a day seems like a lot .
DS had to drink 7 ( 1750 calories) at age 8.
He was about 22-25 kg at the time.
He is 30 kg now . Once we added food back at half dose of en he really gained weight.

Good luck
I hope the nausea passes soon. It is so very hard to watch our children go through all of this. Sometimes I feel like my mood is completely dependent on how my son is feeling. :ybatty:

I hope the GI can get the nausea under control. It is such a terrible symptom to have to deal with. I was told to make sure to have my son take azathioprine on a full stomach, so we always give it with meals.

A quick update for you, my son is now back on a low fibre diet, he did 7 weeks on EEN, the dr didn't want a nasal tube for one week only, so my son is very happy! We have a visit to the hospital in three weeks to discuss the medication again....thanks so much for your support x
Hi I just wanted to send you my love and support.
You have an amazing little boy and he is doing so well xxx
Sorry I can't offer any more advice xxx