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05-19-2012, 11:46 AM   #1
KB's mom
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Intro/ 4yo w Crohn's/ EN vs. SCD???

Hello All,
I have been researching and reading for quite a while. This forum has been very helpful! My 4yo daughter has had Crohn's since age 2. She intially presented with poor growth, 5-7 bm's/day, and belly pain. Her diagnosis was confirmed through scopes. For the first year she managed fairly well just on Pentasa and probiotic. In Dec. of 2011 she was escalating (fever, pain, poor mood, poor linear growth) and did a round of prednisone which worked well. Symtoms have come back and she was put back on prednisone again while we are figuring out the right course of treatment for her (the pred does not seem to be as effective this time). Last month her fecal calprotectin was 403 and we are about to test it again. We sought 2nd and 3rd opinons because we are so hesitant to start the stronger meds if we can find another way that will work best for her.

What are other's thoughts about a 4yo on SCD vs. EN? I lean toward EN because I would know for sure she is getting what she needs nutritionally, plus we have a 2.5yo little sister in the home. KB is not in school but is supposed to start 4K at the end of August. She is generally a fun-loving and sweet child and it becomes very obvious when she is not feeling well because her mood significantly declines

Any advice is greatly appreciated!
05-19-2012, 04:05 PM   #2
DustyKat
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Hi KB's mom and

I am so sorry to hear about your little one Mom...

Where is your daughter's Crohn's located?

Unfortunately that can happen with Pred and once Pred has been used it can make EN less effective. Having said that, if your daughter has small bowel disease her results with EN will be better and I would personally start with this. As you can well imagine compliance with any diet is difficult at times and can be even more so with a young child but it is always worth a go. To me it would a more immediate effect by removing all sources of irritation and so allowing the bowel to rest and most beneficial of all it will provide her with all the nutrition she needs. If it is successful then when you reintroduce food you can decide then if the SCD diet is the one to follow or if it would be better to slowly reintroduce foods and use that a trial to see what suits and what doesn't. Of course you may decided neither of these is appropriate. You can still continue to use EN as a supplement. I think Dexky had his boy on SCD for a while??? If it was this then he found it lacking for a developing 10 year old.

Have a look at Low Dose Naltrexone as a alternative drug treatment. It may not be suitable in your case but still worthwhile to have in the memory banks.

There will be others along that are far more experienced in this area than I! and there are quite a few parent's here children your daughter's age.

Good luck hun and welcome aboard!

Dusty. xxx
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Mum of 2 kids with Crohn's.
05-19-2012, 04:07 PM   #3
Farmwife
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and welcome. I'm glad you found your way here. Sorry to hear about your little girl. My girl is 3. So I completely understand about the mood changes. Grace my 3 yr. old is undiagnosed as of yet. We'll be going to her new GI in June. We have yet to start meds but I've been reading a lot on EN and I will be doing that for Grace if she has a bad flare up before her appointment. I have no experience SCD. I understand about not wanting to use stronger meds. I know others will be along to answer you Q's. Again welcome.
Farmwife

Last edited by Farmwife; 05-19-2012 at 04:38 PM.
05-19-2012, 05:09 PM   #4
jonathanzn
 
Join Date: May 2012
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why once Pred has been used it can make EN less effective? I don't understand.
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Jonathanzn

DX: Crohns April 2012
Now:intestine half-obstruction
Current Meds: 25mg/d prednisone, 4g/d Pentasa, 75mg/d Imuran
Previous Meds: 4g/d Etiasa(3 weeks), Prednisone(3 weeks 40mg/d, then reducing 5mg/w), Imuran(50mg/d 1week)
05-19-2012, 05:32 PM   #5
KB's mom
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Thank you everyone!!! I very much appreciate your input and experience as we all are trying to figure out this complicated journey for our kids. KB's Crohn's is in her terminal illeum and granulomas were found in her colon. She also has esophagitis and is on Nexium and Zantac. She gave me some pretty good scares in the past by coming to me holding her chest and saying it hurts. At least now I know what it's from! Her GI is also talking about switching her to Entocort along with starting the NG tube. She had a bug recently and we are waiting for things to calm down from that before making changes.
Thanks again!
05-20-2012, 04:56 AM   #6
Sascot
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Welcome to the forum! I would definately recommend the EN, it certainly helped my son be symtom free for a few months, although we have never tried the pred so I don't know what difference that makes. Still it is great knowing they are getting good nutrition. My son had the NG tube for 8 weeks and it didn't bother him apart from the first 3 days when it felt uncomfortable. After that he barely noticed it. Hope your next treatment works well whatever you choose.
05-20-2012, 09:41 PM   #7
Twiggy930
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Hi there KB's Mom,

Sorry to hear your daughter has been unwell. I would definitely try EN before the SCD diet. EN has a proven track record that is almost as good as Prednisone at inducing remission, especially in kids. As Dusty said you could then choose to follow the SCD diet once you start to re-introduce when she has finished EN. That would sort of be getting the best of both treatments. I have briefly looked into the SCD diet and could not figure out how I would feed my son on such a diet, it would be very hard as he LOVES bread.

My son did a course of prednisone that didn't fully induce remission so we then did a 6 week course of exclusive EN. He took the formula through a NG tube overnight and it worked quite well. He took his NG tube in and out everyday himself but he is 10 years old. It was definitely nice knowing that all his nutritional needs were met.

Good luck with whatever path you choose. These are rotten choices that we parents have to make. Keep us posted on how it goes.
__________________
Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
05-21-2012, 09:05 AM   #8
Coltyn'sfamily
 
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Hi everyone,
I seem to be in a similar situation. My son, Coltyn, has Crohn's. We started with asacol then to remicade then to methotrexate and now pred.. They want to try humira next but I just have a really bad feeling about it. Ive been reading in the forum about EN and that has never been given to us as an option.
I would like to hear more of your experiences on EN. We have to make a decision about his treatment by the end of the week. Humira or EN??
05-21-2012, 10:39 AM   #9
Twiggy930
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Hi Coltyn's Family,

My son is 10 year old and has just finished a 6 week course of exclusive EN. EN was presented to us as a treatment option, comparable to Prednisone but without the side effects, when my son was diagnosed. We were given the choice between EN and pred to induce remission while we started him on azathioprine (Imuran). We first went with pred because my son was not ok with the thought of the NG tube or not eating for 6 weeks. Pred did not entirely induce remission so after about 1 month we switched over to EN and at this point my son was totally on board with trying EN.

My son is a very picky eater so we knew from the start that EN would entail a NG tube as there is no way he would be able to drink the shakes for 6 weeks. Amazingly, after only a 1 hour session with the GI nurses, my son was able to insert the NG tube like it was nothing!!! The first thing he did when we got home from that appointment was demonstrate inserting the tube to his sister and grandmother so he was clearly NOT traumatized. After about a week he could insert the tube in 13 seconds flat with no help from me. Once the tube was inserted the formula was pumped in at a very slow rate overnight. During the day he was allowed clear fluids, hard clear candies and a few gummy bears.

While on EN my son gained back all the weight he lost and his anaemia cleared up. He also started to have solid BMs for the first time in about 6 months. He found not eating hard but manageable, he was never really hungry just felt like eating. We were hoping that EN would help correct my son's issues with low energy through the day but that has unfortunately not been the case and we are still struggling to get to the bottom of his fatigue.

Having said all that it is my understanding that EN is primarily used to induce remission not maintain it. Its effectiveness at inducing remission is good but its effectiveness at maintaining remission is not nearly as good. There are however some people who have had success with maintaining remission with EN (imaboveitall and Tesscorm) so I wouldn't rule it out completely. EN could definitely be used in conjunction with Humira. There is a thread called Kids on EN in the Parent's forum that provides a good summary of EN stories.

BTW read in another thread that your son is dealing with RA issues. My son has been unable to bear weight on his left leg for more than 2 months now. We were just given the earliest possible Rheumatology appointment and it is in...OCTOBER!!!!!!!

Good luck with your decision. These are tough choices us parents have to make.
05-21-2012, 12:36 PM   #10
Kelly2
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Hi KB's mom,

So sorry to hear about your little one. My child was diagnosed with crohns at age 12, and was very sick for years - until we tried EN. It absolutely gave her, her life back, and the results were miraculous. I have dealt with Crohns for a very long time (15 years), and my advice to you would be to definately try the EN first. Especially during these formative growing years, when good nutrition is so vitally important.
05-21-2012, 01:50 PM   #11
Coltyn'sfamily
 
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I just talked to his RN and the hospital we're at doesn't have a lot of people on EN and not a lot of experience with it. I flat out told her id rather be a guinea pig with EN than Hurmira! I know a lot of people have had success on H but I just have an uneasy feeling about it. Until its FDA approved and in the market a little longer I'm just hesitant to start him on it.
Reading your posts have made me feel so much more at ease with the EN. Not to say that the others haven't made me feel better about H. But its a feeling I can't shake.
Coltyn is a little more at ease with the EN. He sees the commercials about H and that has made him question things (which doesn't help) and I know he knows how his Dad and I feel about the H.
I agree with you, Kelly2, he's 12 and SUPER small! He's that one percent! I'm hoping this will allow him to grow with out all these meds interfering!
I kinda found out why the U.S. doesn't use EN as much as the other countries. Insurance! Our insurance won't cover it if Coltyn gets it. From what i understand its expensive. I think the drug manufacturers have a hold of the insurance companies! That doesn't help families like ours with kids that have this Godforsaken disease!
05-21-2012, 01:57 PM   #12
Coltyn'sfamily
 
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Twiggy-- the RA gets worse when he has a flare up. We are new with the whole RA thing and his appt is in June. I'll let you know what they say! Good luck with everything! This forum has really helped me deal with all this craziness! and I thank every last one of you! <3
05-21-2012, 06:38 PM   #13
my little penguin
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Insurance won't cover formula - BUT...
most have a Durable medical clause (DME) the doc orders the formula through a DME supplier (vital jr, peptamen jr etc...) with a letter of medical necessity. Then most formula is magically covered at whatever your DME rate is as medical supplies and home infusion therapy.
Some cover 80% until you reach your max out of pocket.

If that doesn't work there is the magic foundation

http://www.childrensmagic.org/
Oley foundation
http://www.oley.org/

and discounts through the suppler directly (nestle, abbott etc..)
http://www.nestlenutritionstore.com/
http://abbottnutrition.com/Child/Childrens-Formula.aspx

https://www.neocate.com/shop/c-6-nutricia-category.aspx

Good luck
05-21-2012, 07:06 PM   #14
momoftwinboys
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Welcome. We have not done EN. Mentioned it to our gi at last appt and they do not have many kids on it. We do supplement with boost but can't get more than one a day in him without a struggle. He is open to ng if it means we won't bug him to eat more. I did ask a pediatrician who practices integrative medicine about SCD. Her thoughts were that it did not provide sufficent nutrician for growing kids and hard for them to find enough things they like to maintain the diet long term. She suggested dr mark hyman site for healthy eating. good luck in whatever you decide. Sorry to hear your daughter has gotten this so young.
__________________
Son (age 13) dx Crohn's October 2011 (age 10)
Azathioprine 10/2011-11/2012
Remicade October 2012
krill oil, multivitamin, liquid Vitamin D/Calcium/Magnesium, zinc, pro-thera complete probiotic.

"The decision to have a child is to accept that your heart will forever walk about outside of your body" Katherine Hadley
05-21-2012, 10:49 PM   #15
Kelly2
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My medical insurance company will cover 100% of the formula AS LONG AS YOU STATE THAT IT IS THE SOLE SOURCE OF NUTRITION FOR THE PATIENT. Our GI doctor would write a letter stating that it is the sole source of nutrition, and it was covered. It always frustrates me so much when I read about all these road blocks you encounter, when you want to try enteral nutrition instead of all these meds. It always amazes me, that these gi docs will prescribe Humira and Remicade, without even giving EN a try. If it were their child, I wonder what their first choice would be. Also, wanted to mention through trial and error, that I discovered it is best not to give my child Boost or Ensure - it is full of sugar which is not good for ibd. Try the Peptamen 1.5 drinks - it has extra nutrition, and It is specifically formulated for easy digestion and absorption for patients with impaired gastrointestinal function and normal or increased caloric requirements Many of the kids who are given the EN go through amazing growth spurts when they are put on EN. All the other medical treatments like Remicade and Humira etc. are very good - my child was on Remicade for many years without any ill effect, but something like EN without any side effects at all, would be my first choice.
05-22-2012, 08:40 AM   #16
Tesscorm
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Hi KB's and Coltyn's moms,

I also wholeheartedly encourage you to try EN. My son was diagnosed last May and EN was the treatment given to him (steroids were mentioned 'in passing' with emphasis on the cons but the GI's preference was most definitely EN with emphasis on the pros ). I believe having had it offered to him in this manner contributed to his decision to go the EN route. He was 16 when diagnosed so, admittedly, younger children may find the diet more challenging. He responded very quickly to the EN and, like Twiggy's son learned to insert the tube quickly and easily, ingested the formula overnight and was allowed clear fluids during the day (broth, 7-up, Gatorade, jello, etc.). He had lost approx. 20 lbs prior to diagnosis - within 3 months had gained 30 lbs.! The initial 6 weeks were the 'exclusive' period (formula only) and then we gradually added back all his foods (except seeds, nuts, veggie/fruit skins). He has continued with the EN at 1/2 dose, 5 nights per week. So far, his only medication has been Nexium on the nights he has the formula.

Julie's (imaboveitall) daughter also had great success with EN and it was her sole treatment for over three years. My recollection may be off but, I believe her daughter was approx. 11 when she began EN.

But, whether or not it induces remission, it is certainly a relief knowing that your child is receiving proper nutrition!!! My son has always been a picky eater - if nothing else, it has alleviated pretty much all my worries about his nutrition!

Cost is certainly an issue - ours is not covered by insurance! Luckily, it has, thus far, been covered by a regional medical assistance program - if it is not covered by insurance, perhaps there is another agency that your GI's office can suggest.

Good luck!
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-22-2012, 10:23 AM   #17
crohnsinct
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Hi KB and Coltyn's moms,

Another EN fan here.

We are only halfway through our EN journey so I can't really say if it has gotten her to remission yet. Also, at dx in the hospital she was very, very ill and our doc was seriously worried about her and presented Remicade and Prednisone as our only option. He did say if it were his child (and he has a 6 year old) he would do it. We had zero knowledge about Crohns and only found this forum and the wise and wonderful parents after a few Remi infusions.

Anyway, all worked fine until Prednisone was tapered and she would step backwards. She can't stay on Prednisone so doc suggested adding Methotrexate to the Remicade and that is when I asked about EN. He whole heartedly supports it. She has avoided the tube. She drinks 6-8 Boost/Ensure shakes a day. That is was doc suggested although I tend to agree with Kelly2 about the sugar but am doing as doc says. I think he suggested that because it is more palatable for the kids. No wonder with all that sugar

It seems to be helping although I have no proof (test results scopes etc) but I can tell you she looks better and has a lot more energy...less bleeding also! No weight gain but maintaining where she had started to lose prior.

I think the plan is to keep her on Remicade for maintenance and cycle on and off exclusive EN as needed.

My thinking was this...EN won't harm your child (quite the opposite will only help if only with nutrition) so why not give it a try. Unlike the drugs that come with side effects and risks and also once added are very hard to remove.

Our insurance covered it but even if they didn't a 6 pack of shakes was about $8 a day and there are always coupons out there (my whole church has been cutting them for me and since my shakes are now covered I can mail coupons to whoever needs!)..I figure I spend almost that much a day feeding her anyway. I know this doesn't help if you need the tube though

Less effective when used after Prednisone??? Hmm first I heard this and such a bummer as O was on Pred for 3 months prior to starting EN...here's hoping!

Good luck with whatever you decide!
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
05-22-2012, 01:34 PM   #18
kathymum
 
Join Date: Apr 2012
Location: Ireland
Hi All ,
My daughter Amy aged 8 was diagnosed march 2012 with crohns and has 6 /8 weeks of modulen she has started eating again all normall food but low fibre diet and it is honestly nothing short of a miracle she looks so so well ( she had her first communion on sunday and was just glowing she has gained 13lbs in last eight weeks and although still slightly anemic she has stated iron she is so active and has grown 3 quarters of an inch in last eight weeks !
I would say to any parent please give the modulen a try it does seem to work however difficult Amy is also on 75mg of azathirprin ( imuran) but she is at present playing outside ( good weather here in ireland for a change ) outside and is glowing she has had proper B/movemnets for the last 2 weeks and is eating well, although smaller portions than before we are also trying to get her to eat slower I actually cant believe this is the same child and she looks so different and so well just want tyo thank you all for your support as a parent it is heartbreaking to see your babies go through this but please keep faith love to you all xx
ps have anybody tried manuka honey ? thinking of getting it anyway
05-22-2012, 03:02 PM   #19
Farmwife
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Hi kathymum,
I'm glad your girl is doing better! I myself use honey we get from my farm to help reduce inflammation. It works great for me. However, for my girl that possibly has crohn's it didn't seem to make the slightest deferents. I've never heard of manuka honey. I'll have to google it! Good old Mr. Google where would I be without him.

Farmwife

Last edited by Farmwife; 05-22-2012 at 03:19 PM.
05-23-2012, 02:45 PM   #20
DustyKat
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why once Pred has been used it can make EN less effective? I don't understand.
Typical me...this is something I researched some time ago and do you think I can find where I read about the effectiveness of EN post other treatment...NO! Between my memory and a new computer, different bookmarks now, it seems to be a lost cause.

This approach is very helpful in Crohns disease (CD), but is not as helpful in Ulcerative colitis (UC). Enteral nutrition is as effective as steroids in achieving control of CD, but leads to much more effective healing of the lining of the gut and avoids any side-effects related to steroids.

As well as anti-inflammatory effects, enteral nutrition also has benefits for nutrition and growth. This therapy tends to be more effective when used as the first treatment for CD: but it can still be very helpful in children that have had CD for some time. Enteral nutrition can also be used to help maintain control of CD - in this case it is used as a supplement along with a normal diet.

http://www.sch.edu.au/departments/crohns_colitis/
IIRC, the statement in bold led me to research further and I can only assume that it had something to do with the way the mucosa heals. It doesn't mean that EN won't work further down the track and for many it may be just as effective but perhaps for some the bowel is a little less receptive.

Dusty. xxx
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