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02-13-2012, 11:01 PM   #1
Callie
 
Join Date: Feb 2012
Location: Vermont
Any other parents using SCD?

Just curious how many take the path we are taking: trying SCD before anything else. It is not easy but my daughter seems on board, though it has only been 2 weeks. We've also decided to add LDN since it is considered safe, and as the doctor said, "Couldn't hurt."
I'm really terrified of the immunomodulators and the TNF inhibitors, though I recognize that my daughter may decide at some point to take that route. She will be 18 in less than 1 year, and though she is resistant right now (it's all so new), she is going to have to learn about this disease and figure out how to live with it.
02-14-2012, 06:16 AM   #2
Dexky
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When my son was being tested for his PSC, we spoke with a dietician who put him on a modified SCD diet based on blood type. I decided to help by eating what he could eat. I lost 40 pounds in about 6 mos. and decided against it for my son who was ten at the time. It just didn't provide enough calories for a growing boy and the PSC was dxed anyway.

I could well imagine that since your daughter is nearly an adult, it may be beneficial. There are threads on here about SCD's and LDN. Many GI's won't entertain either approach but it sounds like hers is on board. I'd say go for it!!
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02-14-2012, 07:47 AM   #3
dannysmom
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At the advice of a (radio) MD that specialized in holistic treatments, Danny tried both SCD (5 weeks) and LDN (couple of months) ... neither helped (nor hurt). The amount of fat you can end up consuming on SDC is very high (between the eggs, meats, butter and nuts). We've learned since then that too much fat causes problems for Danny. Danny did not like vegetables enough to have more than a few portions a day (ie salad for lunch, raw veggies to snack on, cooked veggies w/ dinner) - so I think the proportion of meats/fats in his diet was too high. I have no regrets trying it ... & I hope it helps your daughter. (I miss the almond-flour nut muffins)
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02-14-2012, 12:17 PM   #4
kimmidwife
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We have not tried the SCD but are currently trying the LDN let us know how it turns out!
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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.
10-04-2012, 01:03 PM   #5
srzm
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Hi, new to this forum and confused as to what we should do next. My 15 year old was diagnosed 6 weeks ago. My son never had diarrhea but had stomach aches and major weight loss, 30 lbs in a short time. Doctor started him on 30mg of prednisone that has been tapered down to 5mg and will be done on Sunday. At the same time, we started him on the SCD diet. Day 3 into the diet and pred his stomach aches went away completely. He has gained back over 20 pounds in 5.5 weeks and works out almost everyday including playing a highly competitive sport. On Tuesday we went for a 2nd opinion at CHOP (#1 pediatric gastro hospital). Matt has zero symptoms at this point but the doctor insisted on giving us a prescription for Pentasa as "maintenance" and told us he could not recommend the SCD diet because it was not clinically tested.

At this point I am scared of what will happen when the pred runs out on Sunday. Anyone else have an experience with SCD?
10-04-2012, 01:55 PM   #6
Farmwife
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Wow that's great to hear that SCD worked for him
Our doc (GP) wanted us to start it but we were afraid because it takes Grace 3 FULL meals a day plus 3 shakes to keep her weight up. We thought at the time that would be to restrictive for her.
But we started a "clean eating diet" and now she only has shake if we notice she's unwell. YA
But now Grace might have a bad Candida infection and not IBD.
However my doc still says IBD is still a possibility.
But hey a girl can hope.

Welcome aboard.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
10-04-2012, 04:06 PM   #7
killcolitis
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We did try scd when my daughter was first diagnosed with UC and put on prednisone. It seemed to help and we weaned off without issue and stayed well for a few months. At about the three month point ("three month flare" according to the book BTVC) she flared. Nothing helped, back on steorids etc etc. We tweaked the diet, eventually trying low carb paleo which did help but not enough. It just was not keeping her in remission by any means so we stopped but that does not mean it will be the same for you. I hope it works.
10-04-2012, 04:17 PM   #8
srzm
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Thank you for all your posts. Those of you that tried SCD, did you also use any supplements such as probiotics, curcumin etc?
10-04-2012, 04:25 PM   #9
Mehita
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Quite honestly, srzm, I'd wait a bit to see if your son maintains the weight before introducing a new diet. Prednisone is known to increase appetites and you may find that a week to two weeks later his appetite drops significantly (and along with it, some weight).

In general, I'm all for trying to diets as long as you keep in mind these are growing kids who need calories and it's their choice - or they at least have some say in it. My son is on a gluten free (Celiac Disease), low fiber and low residue diet (stricture) and not by choice, which introduces a whole different set of challenges at home and at school. But if your kids want to do it, educate yourself and go for it.
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- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
10-04-2012, 04:28 PM   #10
killcolitis
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We used the scd probiotic and mutlivitamin. We juiced fresh wheatgrass and did a couple of other things which were all SCD "legal". It's true that weight loss/failure to gain was an issue for us on these diets (and in general).
10-04-2012, 05:12 PM   #11
my little penguin
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As far as pentasa - I would take it.
It has next to no side effects and you will now shortly if it can handle the ibd by keeping it in control without the pred. Right now you really don't know the scd was doing anything since he was on pred which usually does the trick all by it self.
Pentasa most of the time is still not enough but worth a try.
Diet can help with symptoms and how the child feels but diet alone can not keep the disease from progressing.
You really need to keep the inflammation down.
Pred got it down and hopefully a weak drug like pentasa can keep it down.
My son age 8 also gained weight on pred this summer . It's a known side effect since it makes the child very hungery. Our Gi said he would not be concerned with weight loss at this point since that is what usually happens once the pred stops.

I am not saying not to try it but
A proven therapy is EN in kids with crohns.
Some drink elemental ( e028 splash) some drink semi elemental ( peptamen ) and some drink polymeric ( boost ensure).
The key is it becomes sole nutrition for 6 weeks then you cut the dose in half while consuming foods .
This helps when combined with a maintance meds such as 6- mp or pentasa.
Tess has luck with her son just using en without any other meds.
We have not.
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10-04-2012, 11:52 PM   #12
jmckinley
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We were doing the SCD for a while when Ryan was flaring. It helped, but the flare was too far gone for the diet to help alone. It was funny though...he still felt pretty good tummy-wise when on the diet. We had so much trouble with weight loss though, we had to stop when he went in the hospital.

Now that he is better, we need to get back to a modified version of it. Many meats are just too hard on the system, as well as the nuts, raw veggies and we can't do too many whole grains. He did also and does still take probiotics, vitamins, and fish oil.

You will just have to tweak it some to find the right mix. Good luck with it!
10-05-2012, 12:00 AM   #13
kiny
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Dunno about safe. LDN is a new drug, it crosses the blood-brain barrier (which is why people get those lucid dreams), I don't think it's fair to say "it's safe", there haven't been that many tests especially not for crohn. Maybe it is safe, but it's not a light drug, but until they actually do bigger trials no one knows if it's safe for crohn, I think there were only 2 small scale tests.

I don't understand why you're terrified of other drugs that had 100 times as much testing as LDN but don't fear LDN, if you fear those type of drugs why not LDN, it affects TNF-alpha, it affects the immune system, it crosses the blood brain barrier, it affects the opoid receptors, why not scared of LDN. Are there big scale tests of LDN that showed it is safe for crohn? I don't know of any. Are there tests that show it's safe for kids? I don't know of any.
10-05-2012, 10:44 AM   #14
Callie
 
Join Date: Feb 2012
Location: Vermont
Wow, I guess I haven't been here for awhile since I haven't posted since February. OK UPDATE: my daughter is still on SCD and LDN. She also takes Vit D, an SCD multivit, 2 probiotics, and fish oil. She has never had any other medication. She is now symptom free and has been for 4 months. She has gained back most of the weight that she lost.

SCD has not been a walk in the park, but it has gotten easier. If I could stay home and cook all day it would be even better yet. There are some great recipes out there. Traveling is the hardest, but we manage with a whole lot of pre-planning. My daughter even went to 2 camps this past summer and managed to stay SCD legal.

As for LDN, it does not cause cancer or suppress the immune system. It's an old drug that's been around a long time. I'm a nurse and give it at more than 10x higher doses to patients all the time.

The only thing is that since we started SCD and LDN at roughly the same time, I don't know which is working, or if they both are. But she is doing well so I don't want to rock the boat. Whether this path proves to work for her long term remains to be seen.
02-01-2013, 10:23 AM   #15
MomRocksOut
 
Join Date: Dec 2012
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We are following SCD and my son is eating between 2200 - 2500 calories a day. He wasn't gaining weight until he started eating this way.

He doesn't eat any raw vegetables. I make him yogurt, mayo, breads with almond flour which are all high in calories. Cage free eggs, fresh/natural chicken, grass/hormone free beef. He loves smoothies and gets at least one a day which I can pack calories in with avocado yogurt, banana, strawberies or tropical frozen fruit, juice, carrot or lettuce. A smoothie is the only time he has raw vegetables, but they've been pulvarized so not a problem.
02-01-2013, 10:39 AM   #16
Farmwife
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MomRocksOut
Do you have a recipe for the bread. My Grace can't have wheat, corn or eggs of ANY kind.
I'm an avid bread maker so this is kind of throwing me for a loop.
02-01-2013, 12:18 PM   #17
my little penguin
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FW - because of the egid she will have to trial one ingredient at a time .
Unless your Gi does top eight free - then scd diet does not work since it relies heavily on nuts .
Keep in mind most gluten free flour is cross contaminated with corn .
Or your Gi could have you trial one thing only
So for three weeks nothing but potatoes
Or nothing but grapes etc....
It could be a long time before bread .
Baby steps and hugs
It is alot to take in
02-01-2013, 12:24 PM   #18
my little penguin
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But for your future sanity
Her new bread --
http://www.vansfoods.com/our-product...erry-Waffles-5
But won't work if you avoid soy

Go on King Arthur flour recipes
Their bread is good to make but gluten free with out egg is tricky at best
Stick to muffins
Wraps
But that will be a long time down the road ( possibly years for your little one )
02-01-2013, 02:12 PM   #19
Charleigh
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I don't think I have ever noticed this thread. We are using SCD. There is a SCD support thread in the diet section of this website (not in the kid's forum).
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02-01-2013, 02:51 PM   #20
Farmwife
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But for your future sanity
Her new bread --
http://www.vansfoods.com/our-product...erry-Waffles-5
But won't work if you avoid soy

Go on King Arthur flour recipes
Their bread is good to make but gluten free with out egg is tricky at best
Stick to muffins
Wraps
But that will be a long time down the road ( possibly years for your little one )

THAT'S IT MLP!!!!
Dusty I want a smile holding a pin and we WILL named it.....MLP bubble popper!!!!!!
02-10-2013, 12:00 PM   #21
Clash
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C's Ped. GI Group, I think in conjunction with CHOA(not sure though) is currently enrolling for a research trial on Evaluation of the specific carbohydrate diet in children with Crohn's disease. It must have just opened recently since I don't remember seeing it the last time I perused their website.

Edit: Although admittedly I may have just not noticed it earlier.
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C age 19
dx March 2012 CD

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Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
05-02-2013, 01:10 PM   #22
incik
 
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Hi! My 7years old daughter used SCD diet 2 years and after that we have slowly added foods back, right now we avoid wheat, lactose and white sugar.

Crohn was d-ed when she was 2 years old (bleeding, pain..). All symptoms were gone after one year on SCD, we continued strictly on SCD one more year. No meds last 3 years (imuran).
08-31-2013, 09:37 PM   #23
Sudsy
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My DD was on SCD for 5 years strictly and it was amazing. Her growth took off (no matter how much ice cream we fed her before starting SCD she lost weight). She was off for two years and is now back on SCD and meds due to a flare.

She is now almost 16 and is 5'8" and 130 lbs, and I am very, very thankful that she was able to get to a full adult height and weight! Even though it's hard to follow, and I am so very glad to know about SCD.

Good luck!
08-31-2013, 09:49 PM   #24
CrohnsKidMom
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Sudsy, My son is 8 yrs old and his recent bloodwork suggests he is in remission. I'm trying to figure out how to feed him. We eat pretty healthy anyway, but I want to help keep him in remission as much as I can. I've reviewed the SCD diet and it mostly looks like just regular healthy eating. Is there something really specific about it that makes it different?
08-31-2013, 10:28 PM   #25
Sudsy
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It is TOTALLY "regular, healthy eating", except that it is suggested to be fanatically adherent. (Actually, the advice is to be fanatically adherent for one month and, by then, if it's going to help you, you will know it and continue being fanatically adherent!).

There are lots of things that my kids used to eat while we ate a quite healthy diet that are, unfortunately, not allowed on SCD, like tofu (or any soy product), organic milk (you can make it into homemade yogurt, but not drink it straight up), soft cheeses like mozzarella, chick peas......

I haven't been around long enough to know if it's okay to post a link on here, but you can get the book "Breaking the Vicious Cycle" at Amazon (or your library!). When we were trying to decide whether to try it with our dd, we read the reviews on Amazon (something like 400+ glowing reviews) and they convinced us to give it a whirl. For our dd, it worked great. HARD to stick to, but really like a miracle.

Good luck finding what works for your son!
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