Pediatric crohn's | Imamother

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Forum -> Health & Wellness -> Crohn's & Colitis

Pediatric crohn's

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amother

OP ↓

Sun, Jul 03 2022, 5:03 pm

My 9 year old was just diagnosed with Crohn's and dr recommended starting her on Remicaid. Does anyone have experience with this medication in particular or any other medications? I'm very worried about immunosuppressant medications altogether, and very overwhelmed with this diagnosis in general.

amother

Clear

Sun, Jul 03 2022, 5:06 pm

My sister went through several! Meds
That was one of them

They all either stopped working or had difficult side effects

don't remember what the story was w remicaid.
Sorry I can't be more positive

amother

Springgreen

Sun, Jul 03 2022, 5:24 pm

First off, I'm sorry that you are dealing with this. I have crohns which I was diagnosed with in my young 20s. I'm not sure if all of this is applicable but I will share some things that I have learned.

Crohns is no joke. You cant just leave it alone and ignore it. Though the medications wont free you from crohns it will relieve your symptoms which means internally your body wont keep "decaying."

Diet is supposed to play a huge part. Please try and find someone to help with this part. I believe there is an organization that helps with this but I'm not so familiar. - Is it Chaim medical?

With that said, diet isnt everything. Some people feel amazing on the diet but internally they arent doing so well. Doing diet and medication together is the most effective.

Remicade works wonders. It is a strong medication, but they can increase or decrease the dosage as is needed which means you can stay on it for a while. I had no side effects from taking it.

Be aware if you have too long of a pause between remicade infusions your body may develop antibodies against remicade. For me that resulted in an anaphylactic reaction when I took it again (delay due to change in insurance and their protocols)

No ones crohn's reacts the same and not everyone reacts to the same foods. Keep a food journal to help you figure this out. For some people the reaction is immediate and for others it takes way longer.

Keep getting blood work to monitor vitamin levels since depending on where the crohn's is different vitamin levels may be affected.

Make sure to have a great doctor because that is really the most important he/she should be able to direct and help you through all of this.

Finding the cause of your child's difficulties is a huge step that means even with this scary sounding diagnosis things should start getting better.

Try and get your daughter some friends IRL to connect with. Think theres an organization for that too. This will be invaluable as she learns to manage it and that she isnt alone.

amother

Acacia

Sun, Jul 03 2022, 6:00 pm

I hope my post will give you chizuk. My son was diagnosed 6 years ago at the age of almost 17. We went to one of the foremost pediatric Crohn's specialists, Dr. Marla Dubinsky at Mt. Sinai in NYC. Getting the very best treatment at the earliest possible is imperative. After 2 years of watchful waiting he was put on Humira. He achieved complete remission bH. He feels great, never missed any days of school due to illness, went to yeshiva in EY for 1.5 years. He does not watch his diet at all, though his Dr. did tell him to cut back on sugar as much as possible. Not one other person in the world except my husband and I know about my son's condition. That is the way he wants it and that is what our Rav advised. Every single case of Crohn's is different. There are many many mild cases. Those you don't hear about. Bezras H-shem, your daughter too can reach remission and have a wonderful healthy life.

amother

Wine

Sun, Jul 03 2022, 6:03 pm

Look into scd or gaps diet

Also parasites

2 medications you may want to try before trying immunosuppressants are LDN and HCQ

Refuah sheleimah!

malksters

Sun, Jul 03 2022, 6:17 pm

Ask your doctor about Entyvio to see if it's an option before Remicade, it has fewer side effects.

amother

Leaf

Sun, Jul 03 2022, 6:18 pm

amother [ Wine ] wrote:

Look into scd or gaps diet

Also parasites

2 medications you may want to try before trying immunosuppressants are LDN and HCQ

Refuah sheleimah!

My dh has been on scd for many years and is doing great on it. Check out pecan bread website for info.

Interesting about parasites. A few years before he was diagnosed with Crohn's he had a terrible case of parasites. According to Dr, the parasites got better with medication but his stomach was never the same afterward. He always had stomach aches, sensitive stomach after the parasites. I asked more than one gi about the connection but they had never heard of any connection but I always felt it had to be related.

And if you can get Someone to prescribe ldn, that would probably be a much more gentle way of immunomodulation than a medication like remicaid.

Best of luck and Refua shelaima!

amother

↑ OP ↓

Sun, Jul 03 2022, 7:51 pm

Thank you all for sharing your experiences.
I have several close relatives with Crohn's so this isn't a completely foreign disease. Based on my (so far) limited research, it seems that the earlier the diagnosis is made the more aggressive Crohn's tends to be. I don't personally know anyone diagnosed this young.

Regarding parasites, we have ruled out literally everything else. This was not a straightforward diagnosis by a long shot.

I know there is a lot of research regarding the SCD diet and other nutritional approaches. For many reasons this is not an option and I was specifically asking about experiences with medications. Unfortunately, Entyvio is not FDA approved for patients under 18.

amother

Hosta

Sun, Jul 03 2022, 8:06 pm

My daughter was diagnosed with serious crohns at age 6. She was on various meds- some didnt work, some caused reactions...when she went on remicade it was terrific. BH Bli ayin hara, symptoms completely stopped with no side effects.

amother

↑ OP ↓

Sun, Jul 03 2022, 8:42 pm

amother [ Hosta ] wrote:

Thank you for sharing, that was very encouraging to read! May your daughter continue to remain healthy and symptom free!

amother

Nectarine ↓

Mon, Jul 04 2022, 5:49 am

I think that the biggest concern is taking Remicade along with Imuran (6 mp).

amother

Pearl

Mon, Jul 04 2022, 7:15 pm

I was on Remicade for a few years, it was a miracle drug for me. I didn’t have any side effects, the only thing was that it is done by infusion only and it can take a few hours so scheduling can be annoying.
I went off because I developed antibodies.
As a side note from someone who has Crohns and did an immense amount of research, please don’t try to deal with it by trying holistic approaches and fad diets. This is an actual autoimmune disease that if not kept under control can wreak havoc on the digestive system. The pros of being on an immunosuppressant outweighs the cons.

amother

↑ OP ↓

Mon, Jul 04 2022, 7:27 pm

amother [ Pearl ] wrote:

Thanks for sharing your experience.

I feel that there is a lot of judgement from holistic minded people regarding the use of medications when it comes to IBD. Besides for the enormous risk of diet not working, there are so many reasons for a 9 year old not to go on the SCD (or similar) diet.

amother

Aqua

Mon, Jul 04 2022, 7:29 pm

My child was diagnosed at age 5. It's been a long ride since then, and I still sometimes feel overwhelmed by it all. So I can't give you any practical information, but I'd like to give you a bracha you'll have all the strength and clarity you need to find the best options for your child

amother

Goldenrod

Mon, Jul 04 2022, 7:31 pm

Scd is not a fad diet. There are Dr's that support it completely. I have avoided medication by being on the scd diet and am completely inflammation and scar free. Medication is no joke and I'm not sure how someone can use it without giving way less invasive alternatives a fair shot. I am in touch with many women who have their children in scd successfully. If there's a will theres a way. That being said scd does not work for everyone. But it's definitely a way better choice than meds. Imo

amother

↑ OP ↓

Tue, Jul 05 2022, 5:26 pm

amother [ Aqua ] wrote:

Amen! And same to you

amother

↑ OP

Tue, Jul 05 2022, 5:47 pm

amother [ Goldenrod ] wrote:

There are lots of reasons not to force a child to go on a very restrictive diet. If that worked for you that's great! But, like you said, it definitely doesn't work for everyone. There are many factors to take into consideration and there are considerable risks with both diet and medication. Please don't judge other people's choices and I won't judge yours.

amother

Lotus

Tue, Jul 05 2022, 6:57 pm

The most important thing is using a doctor that you trust. If they will tell you more aggressive treatment is needed in another year would you trust them or want to get another opinion? If you would want a second opinion, use the better doctor all along.

I've never done any very restrictive diets and my doctors were not very supportive of them but clearly there are different opinions. I was told to limit sugar and that more fish vs meat/Mediterranean diet would be good for IBD.

Colleen Web is a great nutritionist who works with IBD patients and has good nutrition content specifically for IBD. www.wellnessbyfood.com

amother

↑ Nectarine

Wed, Jul 06 2022, 5:04 am

SCD is really hard for kids. There is another diet from the University of Massachusetts that allowed a few more things though I'm not familiar with it. I think this is probably too hard for kids too.
And I wouldn't do diet to the exclusion of medications.

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