Crohns (or other lifelong disease) medication choices

amother

Oak ↓

Sun, Dec 30 2018, 9:02 am

amother wrote:

Side effect wise....when we were looking into it for my daughter we did so much research and in the end didnt feel that scared about it...there was one thing I remember about being at increased risk for lymphomas ch"v BUT BUT BUT the increase in risk was tiny. My GI showed us the studies, it was like from a 2% chance in ppl without humira to like a 3% chance on humira. I am making up the numbers because I dont remember but I do remember it was so small that me and my husband both said "oh, thats it?"in relief

I've heard that the risk is greater with biologics in conjunction with Imuran and that class of drugs.

OP, you will get some good input here and from support groups. (Is Dragonpack still active? That was for parents with kids with Crohn's.) But you have to remember that Crohn's hits different parts of the digestive track with different forms of activity so there isn't a OSFA answer. Though the doctors do like to throw just about everything at it. My dc was on a cocktail of a few meds. A top adult GI we spoke to who supports SCD said that there is evidence that there is evidence that kids do well starting with an aggressive medical approach. So don't beat yourself up for being where you are.

The diet isn't easy. That your daughter is willing to go on it is great. There is also evidence that it doesn't work as well for colitis as it does for Crohn's.

There is another diet from Mass U I think that is a bit more liberal. I don't know how long it's been around and how it compares with SCD.

And one thing: there are some great lay people who can coach you through SCD. Please do NOT take medical advice from them, like stopping drugs, etc. Just do it in conjunction with what you're doing and do any weaning off the meds according to your doctor's instructions.

ETA: I see that someone mentioned biologics+MP6 a page a back also.

Again, please don't beat yourself up. Who knows. Maybe had you tried diet first you might have made mistakes, or she might have found it tough and cheated and then you would have lost time with meds. You are exactly where Hashem wants you to be, and hatzlacha moving forward!

amother

↑ Red

Wed, Jan 02 2019, 10:36 am

Thank you very much everyone for taking the time to respond and putting it in perspective.

I brought up some points here with gi

1 he said that if she goes off humira he would try it again but there is real risk of antibodies not allowing it (there are some fears of antibodies now...)

2 he said 85% those on scd diet have a issue every year (I’d love to hear opinions on this)

3 when a child having growth issues is at the edge of puberty he wouldn’t suggest fooling with meds for fear it could harm growth and puberty

4 he said eating a good diet is always a good idea. Like removing all processed foods and red meat for general health. Suggested looking into element diet.

amother

↑ Lilac

Wed, Jan 02 2019, 11:04 am

amother wrote:

Sounds like a great gi! And you seem like an amazing mom!
Yes to number 3 and 4! At this point growing and going through puberty is most important. If humira is working well now I wouldn't take her off. I still think that doing a diet specific for crohns (there are others besides for scd) can only help. Just take into consideration that she's a young child to be on a restrictive diet and scd might be too much for her to handle.... again I think your doctor gave you great advice.
Regarding the statistics of people on scd who still have flare ups, I can only talk for myself and the people I know who have crohns. I've done very well on a diet based on the book listen to your gut and scd (my case is mild to begin with.) I also know someone who's on medication that was working pretty well and once she started scd she's been doing a lot better. (she's still on medication) I also know others who scd didn't work for.
Best of luck
With whatever you do!

amother

↑ Mauve

Wed, Jan 02 2019, 11:28 am

https://m.youtube.com/watch?v=GCVrAuTnVIw

OP, in case you want more info on SCD and how well it helps-I found this Dr speech (hosted by wellbees, which is an online food store for the SCD diet owned by a frum woman from monsey)and he seems to be a big believer in it-now.

I wonder if you could contact him, or the woman from wellbees, and find out in their experience how many people really manage on the diet without symptoms? Im sure the wellbees lady is in touch with many people...not even for now, just of you want to consider scd for the future..

(Wellbees.com)

zrfm ↓

Sun, Jan 06 2019, 2:33 pm

Why can’t you stop? There is one con if you stop she can never go on it again. If it works be happy....not sure how long it will work. My brother tried all Medan in the world he’s going n to 40 and all stopped working at one point now he’s that n a trial medicine...thank god my hub was diagnosed 3-4 yrs ago. We tried 6mp didn’t work. He’s on humira since then. I pray to Hashem it shud always be he God’s Shula has and not stop working.....diet is murder! But indef heard ppl being stable only on diets... but if you cheat once you can make a terrible flare up
Hatzlacha! I haven’t dealt it w a kid bh....only brother and hub

↑ zrfm

Sun, Jan 06 2019, 2:36 pm

amother wrote:

My 9 year old daughter has crohns and is on humira.
I have so many regrets. 1. She hates the shot and sobs. She begs to go on a diet instead 2. There are so many risks with it. 3. You can never stop.

On the other hand she was in so much pain before (bH the worst of the pain was short so it’s easy to forget now) And she hadn’t grown in a few years and bH this was caught before puberty. The humira is working amazing.

We also had tried a milder drug but she was severely allergic and ended up in the hospital for a few days

But I have so many fears that I’ve chosen a drug for her she can never stop. Let’s say at 15 she decided she wants to go on a specialized diet. She still can’t stop taking humira.

Anyone else making these decisions for their kids? Do you have a hard time accepting or coming to terms with it or making peace? How?

It’s soo tough! May Hashem grant you koiches for all this!