Pediatric crohns - where to turn

amother

Blush ↓

Thu, May 31 2018, 12:49 pm

My 8 yr old child was recently diagnosed with Crohns. And I"m so confused with the treatment options.

Dr gives 3 choices. Need to do some additional testing to even see if all are appropriate (like if there is inflammation in small intestines one drug won't work). Plus one drug needs to be given with steroids in the beginning to control pain until it works but she is right now steroids until I make a decisions and it isn't helping her pain (its so sad to watch).

The dr is also very open to using the SCD diet to control it - but he said first she has to be on a liquid diet for 8 weeks (like pediasure) to control the inflammation. I don't think I can do that to her. Not the pediasure (which he encourages and says is doable) or the SCD diet - she likes to eat with her friends, in school - I think it would be incredibly difficult for her. Reading about the initial liquid phase online sounds very uncomfortable. Dr said most kids end up inserting a GI tube themselves. But he said it will help her get nutrition.

Also, Dh and I were thinking about keeping the diagnosis quiet just because why should she have to deal with being labeled with a chronic diseases. Let her be her. She is a happy go lucky, smart, popular and active girl. I hate the idea of sticking a label on her. Is it at all realistic?

How did you make the decision which drugs to give. What other methods or treatments did you try in the beginning? Does insurance give problems or push towards a specific treatments?

smileyfaces

Thu, May 31 2018, 1:30 pm

For starters when you mention doctor I hope you are referring to a GI and not a reg pediatrician.
Honestly, why bother keeping it a secret? I think people would be much more understanding if they knew.
Diets like SCD do great with controlling the symptoms however it does not cure the underlying disease and therefore not recommended by most GI’s. In combination with medication it may work very well.

amother

↑ Blush ↓

Thu, May 31 2018, 1:41 pm

Yes - we are seeing a pediatric GI (did a lot of research and traveling really far for him). She has already had a colonoscopy and endoscopy done.
I'm not thinking of it as a secret - and I don't think she feels it is - I know she has mentioned it to some people.

The GI was saying there is the possibility of the the SCD diet on its own if a liquid diet can clear up all the inflammation first. I'm just thinking at her age - and personality - it would be next to impossible - for example she will only eat WHITE bread. I can't imagine her being so widely flexible on food.

amother

Seagreen ↓

Thu, May 31 2018, 3:27 pm

I am going through this now with my daughter- similar age but we are waiting on the diagnosis (Crohns, colitis or just ibs)
Im not going to keep it a secret, dd is suffering and should know why/ what’s going on with her... I will also let others know so they can be understanding
If you live in the tri-state area, do you mind sharing which GI you are using?
Also what were her symptoms?

amother

Wine

Thu, May 31 2018, 3:48 pm

My 7.5 year old daughter was diagnosed with crohns last year. We still havent found a medication that works because it always starts out looking like its working for the first few months and then she has a full blown bloody diarrhea flare, gets put on steroids, and tries a new med

She started on 6mp.
Then humira injections.
Now shes starting remicade infusions...

I am bracing myself that she realistically may need to try the SCD diet. Which will be incredibly difficult.
Not sure why we have such different information, but im going to disagree with the 2 posters who mentioned otherwise above-in my very exhaustive research ive learned that the SCD diet is helpful in keeping Crohns symptoms away (remission) in about 80% of cases. And also, no question about it, GIs are starting to hop on board in recognizing SCD as a real treatment. HUGE difference between now and 10 years ago. Then, it was mainly "health freaks" that would dare mention such a "ridiculous" idea. Now there are GIs lecturing about it and serious research trials etc (google NIMBAL therapy).

My GI didnt say she would need to do a pure liquid diet first-but she would need to be in remission. Maybe this is the only option to put her in remission if even the steroids arent helping her?

Im sorry youre going through this. Its hard. But hopefully we'll all find what works.

Also, for the poster who asked-im in the tr state area and have been very happy with Dr Shilpah sood. She has offices in westchester and rockland county. Knowledgable, excellent bedside manner, truly cares etc

↑ mommy100

Thu, May 31 2018, 5:14 pm

Those who back the scd diet will give you all data that it is helpful and cures however I spoke with two different GI the first one told me he had a client who was on the SCD diet and doing great mom thought her son was cured and requested a colonoscopy to prove it. The GI said he never saw such bad intestines even though the child was feeling good.
The second GI I asked about it told me he recommends all his clients try cause it may help but in reality it’s only 10% that find a big difference once they are on it and even from those 10% half are also on meds in conjunction so no way to prove what is helping them.

amother

Teal

Thu, May 31 2018, 5:20 pm

My grandson was diagnosed with colitis at about 2 years of age. After several different meds my daughter found Vicky Beigel (she's easily found via google but you do have to wait a while for an appointment. She's in brooklyn but she'll work with you by phone).

She put the little guy on tons of supplements and took him off gluten and dairy. (I think he was 4 yo by then & she taught him to swallow pills. DD had to play all kinds of games with him but he got them down)

BH his numbers came down and eventually he stopped taking the supplements, but is still on the diet. He refuses to take lunch to school (I guess snacks are ok because they don't look all that different) because he doesn't want anyone to see him eating differently, although he has a classmate with celiac!

amother

Gold

Thu, May 31 2018, 9:06 pm

I put my young son on SCD. It was torture. He did cheat, and he went off it.
Years later, in remission for a while, b"H he saw a top doc while he was still on our insurance. The dr., who is SCD friendly, maintains that aggressively treating it with meds from the get go with kids may lead to remission. iow SCD wasn't the major thing to avoid using the big drugs.

IBD strikes different parts of the system in different ways. So there are different combinations of the different classifications of meds. Usually doctors will start with steroids, and then while weaning off the steroids start with other meds and build up to a maintenance dose. These meds do have some long term risks. I think I've heard something about using 6 mp together with the biologics. (These are the IV meds and injections like humira and Remicade.) Ask your doctor.

Also, there are new meds out that are more targeted than the biologics, like entyvio. Ask your doctor what is appropriate.

Refuah shleima!

relish

Thu, May 31 2018, 11:41 pm

I don't know if this can work to heal crohn's but I've used Craniosacral therapy to help clients calm down attacks.

I don't have enough experience to give you a definite yes or no. However, if you are in the NY area, and interested in trying out free sessions, I may be able to connect you to some freshly trained Craniosacral therapists.

Pm me for more info.

Last edited by relish on Fri, Jun 01 2018, 9:47 am; edited 1 time in total

amother

Natural ↓

Fri, Jun 01 2018, 12:10 am

I have developed Crohns at age 30 when going through a very stressful time. I was told that it has to do with how I keep my emotions in my stomach and it causes crohns. After going on medication and staying away from foods that can cause irritation to the intestines like peels, sesame seeds and nuts, fiber, sugar, it helped somewhat but not enough. What really did it for me and got me into remisssion was going acupuncture. B"h I am doing well now. I still take my Meds to keep it up. And go once a month for acupuncture. I have minimal symptoms now and function very well. During very difficult times I can see a change in my bowels as emotional stress effects my intestines but b"h I'm doing very well. I'd consider trying acupuncture for your daughter together with meds and some soft diet (my dr had a nutritionist work with me)to help the colon and intestines heal. From when I started acupuncture it took me a year till I got the all clear from my dr that I'm considered being in remission.

amother

↑ Natural

Fri, Jun 01 2018, 12:22 am

Oh and processed foods aren't either good or easy to digest. So the most natural that food comes from is best to eat, very well cooked vegetables. Peeled cucumbers are ok, peeled tomatoes, very soft cooked frozen veg, baked sweet potatoes, cooked apples. Melons are good, no kiwis, strawberries, no lettuce, no beans, no fried food, peppers hard to peel so I stayed away from, stick to Plain white or spelt, no whole wheat as it's harder to digest... can't remember it all. But now I can eat all these things. Of course I still try to stay away from fried or processed foods but with moderation it's ok, peels are no problem and I'm back to eating whole wheat bread. I can see which foods aren't the best for me when I get bloated or crampy from it so I know to keep away. Im happy with my GI dr. Dr. Jacob from Weill Cornell. I don't know if she's pediatric.