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01-30-2017, 10:28 PM   #1
Pilgrim
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Another go at SCD

We're giving strict scd another go. We started a few weeks ago, and she's on Humira, Mtx, and Budesonide as well. I'm wondering if any other parents are revisiting it or already seeing some success.
It's been tough but reminds me of the psychological hurdles with EEN. I feel like we just got over the first rough patch and she and I are both more positive about it.
01-30-2017, 10:56 PM   #2
Maya142
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We don't have any experience but good luck! I hope it really helps her!

I think Optimistic's son has had a lot of success with the SCD.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-31-2017, 12:58 AM   #3
pdx
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We have gone back to it for a week at a time when my daughter is flaring. It does help with her symptoms, but we haven't tried to keep it up long term. We actually use the IBD-AID diet, which is similar to SCD, but feels a bit more scientifically based to me and is a little more generous in what is allowed.

Good luck to you. I do strongly believe that diet has a role to play in IBD treatment, and I hope that it helps your daughter!
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
01-31-2017, 02:16 AM   #4
Sascot
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Good luck, hope it helps
01-31-2017, 09:49 AM   #5
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My dd tween is on month 9 of a modified diet that started with SCD, We worked closely with a nutritionist and made some modifications quickly as dd was able to. It made it more doable/sustainable which was our goal. Over time, we continued modifications and it's probably closer to a paleo diet at this point. Paleo gives you a lot more ideas/recipes, etc.

We see GI every 6-8 weeks along with labs to monitor closely and will do scopes in a few months to verify progress as labs show clean. She started on budesonide then moved to just Pentasa & mix of probiotics. She is mainly symptom free and now growing crazy fast (after having stopped for over a year).

I think she did develop real food intolerances over the past few years - not sure if that was Crohn's or something else. So its possible, that some of the symptoms were due to the intolerances.

As she has gotten stronger, our GI says an occasional treat off diet isn't the end of the world. Still it's not always easy with a tween.

Good luck
02-11-2017, 10:21 AM   #6
Optimistic
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Pilgrim,
My son has been on SCD for over 3 years and it is working well for him so far. I don't post a lot about it because I get replies and messages that diets don't work. I'm happy to answer any questions.

I can't give SCD full credit because he went through a long course of steroids and EEN before he started a regime of SCD and partial EN. He is monitored with labs and FCP every quarter and an annual scope. Symptoms went away and FCP improved fairly quickly but it was almost a year before the scope was clean.

We follow it with no exceptions or modifications. The reason is I'm a scientist so I ask "what does the data say?" There are studies that show success with full compliance to SCD. While some people reduce symptoms with adjusted versions, there is nothing showing that modifying gets the full mucosal healing we seek. So, we follow it as written just as we would follow the protocols for any meds he might take. The data lover in me can't veer off course! We also committed to it for some time just as we would a med. it is easy to read anecdotal stories and think after a week everything should be much better. If there is a golden ticket like that for Crohn's then I want it now!

SCD is hard to follow. I'll admit we have advantage of a gi who recommended SCD as an approach. He has a number of patients doing well when they comply fully. We have had access to the GIs and nutritionists who led the recent Seattle study as well as others and lots of encouragement. Even then, there are days we hate it.

I'm closely following a study that compares SCD,IBD AID, and other diets. Early read is ....interesting!

I hope Little Pilgrim is doing better.
05-03-2017, 09:01 PM   #7
Pilgrim
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Just wanted to post an update here. We received a call today with the very good news that her fcal is down considerably! We are down to 550! Probably doesn't sound great to some of you but we were at 3600+ a year ago and 1200 in December. We added MTX in December and started strict SCD in January. She's also been on Humira for years. I will ask for a mtx reduction in a few weeks when we see him to determine how much we can maintain with diet.
Very encouraged!
05-03-2017, 09:10 PM   #8
my little penguin
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If it's going down
Why wouldn't you wait for it normalize for a bit first before trying to pull mtx
She may need the combo of the three drugs and diet
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05-03-2017, 09:24 PM   #9
Maya142
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Glad it is down!!!

I agree it might be a bit early to reduce her MTX. 550 is still quite high. I know it's down a lot, but you need it to stay down so she can gain and grow and so you can prevent permanent damage to her intestines.

I would just keep her on it till she is much more stable. Most GIs agree that the goal is mucosal healing - I don't think an FC of 550 means she has healed unfortunately .

I would keep her on meds and the diet till her scopes have shown considerable improvement.
05-03-2017, 10:00 PM   #10
Tesscorm
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Glad you're seeing improvement!

But, I would also keep MTX and diet (and humira) steady until she has been stable for a while. S has been stable for quite a while now but, I remember, when he started remicade, even his supplemental EN I tapered down very slowly (moving from 1500 cal/day to just one or two boost shakes/day). I tapered the amount down over close to two months. I was afraid any shock to his system might trigger a flare or setback.

Now that you're on a good path, I would stay on the same path until she's solidly stable and can withstand a big change (such as removing a med).
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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
05-04-2017, 11:30 AM   #11
pdx
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Thanks for the update--that's great that the FCP numbers are down so much.

I agree with everyone else about keeping the mtx for now. I would even go so far as to say that it might be the mtx that has lowered the FCP so much.

Like you, we were hoping to take our daughter off mtx as soon as we could. A year ago in May, her FCP was finally in the normal range after a year of Remicade + mtx. We took her off the mtx, and 5 months later, she had a flare, with high FCP, pain and diarrhea. She had also started forming antibodies to Remicade. We put her back on mtx in December, and her FCP has dropped again, her symptoms have abated, and her antibodies are back to undetectable.

I know a lot of people say that mtx is just for helping to avoid antibodies, but for my daughter, it's also an important treatment for inflammation.

I do think it's very possible that SCD is also helping, but since you started SCD and mtx at the nearly same time, you can't know for sure. The hard thing is that mtx takes months to build to therapeutic levels, and then months to drop back down, so you can't just stop it for a month or two to see what happens--it will still be working during that time.

I hope I don't sound too negative. I completely understand wanting to get your daughter off mtx if you can. We wanted the same thing! But I did want to share our experience.
05-06-2017, 10:50 PM   #12
kimmidwife
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Always nice to hear good news. I also have to agree with the others to take it slow and don't rush to lower the methotrexate. But I am really happy she is doing better!!!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
05-07-2017, 09:40 PM   #13
Pilgrim
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Thank you all so much for your advice. I don't think our GI will agree to any rash reductions. I agree that it is difficult to know whether diet or med(s) or just a quirk of the disease has brought down the fcal.
What I would like to try is to bring the dose down a small amount and switch to oral intake. We're on 15mg injections and I'll ask for 10mg oral. It's equivalent to about half the 15 injection when bioavailability is considered (oral doses are thought to be less easily absorbed). I think given about 6 months and another fcal we could better see what was working.
05-07-2017, 09:46 PM   #14
Maya142
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Another idea might be to just switch to oral at the same dose. That way, you're not changing too much at once. If you switch to oral AND lower the dose, you have two variables. Which will make it hard to decide what to change, if her FC goes right back up.

I'd probably stick with the injections and ask to go down to 10 mg. The injection is absorbed more easily and that way you'd know that you have just changed the dose and nothing else. Then, if her FC goes up, you will have an easy fix.

Does H hate the shots - is that why you want to switch to oral MTX? Has she ever been on oral MTX before?
05-07-2017, 11:07 PM   #15
kimmidwife
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We switched my daughter to the oral methotrexate and she is much happier with it.
05-08-2017, 06:10 AM   #16
Pilgrim
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What she really hates are the Humira shots (that won't change) and because she's young (6) it kind of translates to an overall shot hatred.
The GI said we could try switching to oral mtx after 6 months. I think psychologically it might be helpful for her. Not sure how her body will like the change, though.
05-08-2017, 06:27 AM   #17
Farmwife
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Same for Grace. Thanks to Humira, hatred for all shots.

Maya had a good idea.
We might switch back to mtx and I was going to ask for oral.
But we need a year of full remission before changing anything.
05-08-2017, 01:20 PM   #18
Maya142
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Poor kiddo. Being on Humira that young is tough. My daughter is 20 and going back on it and she's dreading it!

The reason I ask about oral MTX is that my girls did worse on oral - many more side effects than with the injection. Of course, it is very individual - there are some kids who tolerate oral MTX better than the injection.

But in general, rheumatologists/GIs say that the injection is better for side effects. My girls had bad mouth sores and nausea with oral MTX.

That said, it's worth a try if your GI agrees. It may be that she will be one of those kids that does even better on oral MTX.
05-08-2017, 02:48 PM   #19
my little penguin
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Ds does better with oral mtx
Injectable mtx he had a ton of side effects

Have you tried shot blocker ?
Helps with the injection
Not the med burn

https://www.bionix.com/medicaltech/p...-injections-2/


Can't feel the needle at all per Ds
05-17-2017, 02:17 PM   #20
Sudsy
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Great news! I have huge respect and thanks for SCD. My older dd was strictly SCD for five years. It was hard, especially in the beginning, but her health was so fabulous after being so terrible at diagnosis that it was hard to mess with success.

Next dd had a lot of trouble with SCD since she has an anaphylactic allergy to all tree nuts and is a vegetarian. She did SCD without going through the stages and was on for a total of a year.

Both my girls have been off SCD for a while, but meds alone are no longer holding dd#2, so tomorrow she is going on IBD-AID (based on SCD but less restrictive). Hoping diet will work once again!

Wishing you much success with the diet and may all our kids only know good health!
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19 y/o dd dx'ed with Crohn's at age 8.

14 y/o dd dx'ed with Crohn's at age 7

11 y/o dd with Celiac just to keep things interesting around here....
05-17-2017, 03:49 PM   #21
Pilgrim
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Great news! I have huge respect and thanks for SCD. My older dd was strictly SCD for five years. It was hard, especially in the beginning, but her health was so fabulous after being so terrible at diagnosis that it was hard to mess with success.

Next dd had a lot of trouble with SCD since she has an anaphylactic allergy to all tree nuts and is a vegetarian. She did SCD without going through the stages and was on for a total of a year.

Both my girls have been off SCD for a while, but meds alone are no longer holding dd#2, so tomorrow she is going on IBD-AID (based on SCD but less restrictive). Hoping diet will work once again!

Wishing you much success with the diet and may all our kids only know good health!
Thank you for the encouraging note! I hope IBD AID works well!
05-19-2017, 08:52 AM   #22
polly13
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Hi pilgrim, my little girl is similar age to your lo, she is 8 and mtx and humira since she was almost 4 was doing really well and about 18 months gi decided to remove mtx from the equation and she was in flare pretty immeadiately afterwards that took about 7 -8 months to get back in control, which resulted in increasing the humira dose and re introducing methotrexate and a benzoate free diet for her mouth. she takes oral mtx with the humira shot and is on the benzoate free diet and is doing well. Since the humira does was increased she can use the pre loaded pen which doesn't have the citric acid in it and shot is not painful which is great. Good luck with the diet, really interested in the fact that it seems to be working for her, I have looked at putting lucy on it, but with the benzoate free diet I think it might be a step to far at the minute but really interested to see how you go.
05-19-2017, 08:44 PM   #23
Pilgrim
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Hi pilgrim, my little girl is similar age to your lo, she is 8 and mtx and humira since she was almost 4 was doing really well and about 18 months gi decided to remove mtx from the equation and she was in flare pretty immeadiately afterwards that took about 7 -8 months to get back in control, which resulted in increasing the humira dose and re introducing methotrexate and a benzoate free diet for her mouth. she takes oral mtx with the humira shot and is on the benzoate free diet and is doing well. Since the humira does was increased she can use the pre loaded pen which doesn't have the citric acid in it and shot is not painful which is great. Good luck with the diet, really interested in the fact that it seems to be working for her, I have looked at putting lucy on it, but with the benzoate free diet I think it might be a step to far at the minute but really interested to see how you go.
Thank you so much for your note. I'm ever hopeful we get the sting free shot here in Canada soon. It would make such a difference!
I will try to post updates about the diet as we get test results and visits with GI. She's having a rough go right now, just these past few weeks. I don't know that the diet as we do it is great for strictures with all of the raw fruits and vegetables that she loves to eat. Now I don't yet have a diagnosis of strictures for her, so I am guessing. I moved this week to a lower fiber scd, straining seeds, making soups and smoothies. Trying to make it work!
Does Lucy have oral Crohn's? I'm so happy that you have a system that works. When we get to a really good place, I think I will be ready to stay there. Seems like nothing works for long!
05-19-2017, 08:50 PM   #24
my little penguin
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Even without strictures raw veggies and fruit can be a bit much for ibd kiddies
Raw veggies give Ds watery d
Especially carrots

We stick to well cooked veggies

Good luck
05-19-2017, 09:17 PM   #25
Maya142
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My kiddo can only tolerate very well cooked veggies. Soups actually work best for her.

Hope H starts feeling better SOON!
05-19-2017, 09:27 PM   #26
Pilgrim
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We've been doing great for months with raw veggies! D is not happening. But it's never been the signal for her...Right now it's appetite loss and abdominal pain after eating.
05-19-2017, 09:40 PM   #27
Maya142
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My daughter had those symptoms too when she was diagnosed - our GI said that suggests inflammation in the small bowel.
05-19-2017, 10:03 PM   #28
Pilgrim
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My daughter had those symptoms too when she was diagnosed - our GI said that suggests inflammation in the small bowel.
We NEED small bowel imaging. She had a SBFT after diagnosis when she was 3 but at that point her inflammation was in her colon. Her TI was good then. I know a lot has changed. Her last scopes showed right side plus TI inflammation but small bowel is a big question mark. She has an ultrasound to check her liver in a few weeks. I don't think that will help us image the small bowel but who knows? Maybe he will order an MRI.
05-19-2017, 10:08 PM   #29
Maya142
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Probably not - she'll need an MRE or a pillcam. She's older now, so she could probably lie still for an MRE (a 3 year old probably couldn't!!).

Most children's hospitals have movie goggles to distract kids. My daughter thought drinking the contrast was the hardest part. The taste wasn't too bad, there was just a LOT of it. Definitely take an extra change of clothes !

Are you seeing her GI soon? I'd ask him directly about small bowel imaging - remind him that things have changed a lot in the last few years.
06-01-2017, 10:11 PM   #30
Pilgrim
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We had our appointment, and our GI seemed pleased with how her labs are trending. She had a virus a few weeks ago which I think explained her increase in symptoms. Appetite is coming back, less abdominal pain now.
Her ultrasound on her liver was all normal.
The only downside was she is leaving her growth curve in both height and weight.
For now no changes in meds except we did ask to move to oral mtx and that was fine. We kept the same dose.
We didn't discuss the diet with the GI, but the dietitian asked us about it and is following our progress. They had two families do the diet and refuse meds. One they don't have follow up info for but she said the other child is doing quite well.
She did say that they only want to use it as an adjunct therapy at this point.
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