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Crohn's Disease Forum » Parents of Kids with IBD » Has SCD diet helped anyone with IBD?


 
04-06-2016, 09:29 AM   #1
Rrahman
 
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Has SCD diet helped anyone with IBD?

My daughter was diagnosed with Crohn's in Dec. 2013. The doc wanted to put her on med but my husband and I managed to keep her off the typical Crohn's med so far, fighting with the doctor and stressing on food. She has been suffering from flare ups every now and then and is being treated with Flagyl. When having a flare up she is put on Flagyl for a month and it seems to work for her.
We are big on healthy eating, organic food, grass-fed products, and juicing. Since her diagnosis, we experimented with different diets and ended up with SCD diet (grain-free, sugar-free, lactose-free). After putting her on SCD her flare ups are lot less frequent than before. This time she was symptom free for over 3 months. She's back on Flagyl from yesterday.
04-06-2016, 12:46 PM   #2
my little penguin
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Scd can work in some but not the large majority
Optimistic is a good example

That said forbit to work basically means your not flaring
Flaring is inflammation each cycle causes scar tissue
Your intestine is like a garden hose extremely flexible
Each cycle of inflammation can lead to narrowing ( strictures ) or fistulas ( thin tunnels formed by the body due to increased pressure)
Once the scar tissue is there that section of instestine is like a pvc pipe solid rigid and unusable which can lead to obstruction.

If scd was working you wouldn't need meds every few months for flares
Damage in the inside can be far worse than the symptoms on the outside
Cells left to inflame over and over again are at high risk of cancer
Crohns is very high risk for cancer of the small intestine .

I am not saying scd doesn't work it does but flaring is not a sign of it working


That said many use diet as an adjunct to keep the gut and body as healthy as possible
Ds follows a modified diet
And Crohnsinct can elaborate on her many diet trials

Btw no drug or food is harmless
Flagyl has high risk of neuropathy
Tylenol can kill or damage the liver
Ginger ( herb) can be toxic cause lots of Gi distress
__________________
DS - -Crohn's -Stelara
04-06-2016, 01:11 PM   #3
Rrahman
 
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Thanks for your input. Got me thinking about ginger.
About SCD diet, my daughter has been strictly on the diet for over 4 months now. We are not happy about giving her Flagyl over and over either. Will consider Remicade on her next visit while still continuing SCD.
Thanks a lot.
04-06-2016, 05:45 PM   #4
Optimistic
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Hi. My son has been on SCD for a year and a half. He is closely, actually excessively, monitored by dr with labs, fcp tests and has had 2 colonoscopies in this time. Dr said with one flare or sign of tests going wrong direction he would advise meds. Knock on wood, good for now. He also is on about 20-30% EN (eloccare Jr, boost, ensure).

The frequent flares your daughter has worry me. Is she improving? Are you militant about the diet, as in crazy obsessed? We work with a dietician who is doing Scd studies. Do you have access to this type of resource?

My son does take omeprozole to help with inflammation he had in duodeum. I'm afraid to take him off. He had a ridiculously long course of steroids followed by EEN so I can't isolate what helped him most but we are staying with this for now.
04-06-2016, 06:04 PM   #5
Maya142
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We are also in NJ and go to CHOP - they have a lot of diet studies. That's one place you could try if you want a dietician who knows about IBD and diet.

I will say that our GI at CHOP said there was not enough evidence that the SCD worked. She said the only diet that we know works is EEN - and at CHOP, kids are usually given semi-elemental formula for it (Peptamen Jr or Pediasure Peptide). Some kids drink the shakes and others use an NG tube.

However, we did talk to her about the SCD 3 years ago and haven't asked since, since my daughter is doing well on medications. She does still get formula (Neocate since she could not tolerate Peptamen Jr) as part of her diet.

There are more studies about diet now and CHOP has definitely been focusing on nutrition.

There are some presentations on diet here:http://www.chop.edu/health-resources...s#.VwWV42OFk_0
__________________
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
04-06-2016, 07:06 PM   #6
crohnsinct
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I am crazy obsessed with diet.

My older daughter was too severe to start with that and once on Remicade, I didn't want to chance taking her off to try diet. WEedid have trouble tapering steroids at the beginning so we used EEN to get her to a good solid remission so Remicade could take over from there. She has remained in remission since. We used a clean diet approach with O and she really responds. While Remicade definite maintains a remission of sorts, the clean diet gave her an added boost with weight gain, energy etc. At the time our GI didn't really believe in diet but after seeing the effect it had for my daughter and what happens when she goes off he is a believer of diet to complement meds.

My second daughter was more mild. We were able to induce remission with EEN, however, we also started her on Methotexate. Once the Exclusive period was over we used a strict diet. Within weeks her inflammation returned, even on Mtx. We then added Entocort, which didn't get her to remission. Another round of EEN worked and then we used the IBD - AID diet (based on the SCD diet) with slow reintro, again within weeks her inflammation returned. Unfortunately the diet approach didn't work for my daughter but then again it looks like even the med she is on won't work either.

I have weekly chats with the dietician at our hospital. To date there are no studies that prove endoscopic mucosal healing using diet alone. Plenty of symptom resolution though. It is however becoming the focus of much research and attention.

The best diet approach I have seen to date is a period of exclusive enteral nutrition followed by a defined diet with a very slow reintro of foods and foods not to exceed 50% of the diet...formula being the other 50%. The other approach is a month long period of EEN followed by slow reintro of regular diet for another 2 months and then back to EEN and so on.

Maya is right in that CHOP is doing a lot of the research and practice on these methods.

I also agree that your daughter does not seem to be in a deep remission...although she could be if these symptoms are just an IBS or gastroparesis overlay but the only way to determine that would be scopes and imaging.

Good luck with your journey and keep us posted!
__________________
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
04-06-2016, 09:19 PM   #7
Rrahman
 
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Glad to know your son is doing well on SCD. My daughter is doing a lot better than she had been last year. This is her first flare this year.

We put her on SCD last year but was not following it properly. We allowed occasional party food and restaurant food. Beginning this January,she is on the diet in proper sense. I make all her food from scratch. Even make yogurt at home following SCD recipe. Her doc is planning to put her on Remicade since long-term antibiotic will have adverse effect on health. Ramicate is not benign either. But guess we can't have it both ways.
Hi. My son has been on SCD for a year and a half. He is closely, actually excessively, monitored by dr with labs, fcp tests and has had 2 colonoscopies in this time. Dr said with one flare or sign of tests going wrong direction he would advise meds. Knock on wood, good for now. He also is on about 20-30% EN (eloccare Jr, boost, ensure).

The frequent flares your daughter has worry me. Is she improving? Are you militant about the diet, as in crazy obsessed? We work with a dietician who is doing Scd studies. Do you have access to this type of resource?

My son does take omeprozole to help with inflammation he had in duodeum. I'm afraid to take him off. He had a ridiculously long course of steroids followed by EEN so I can't isolate what helped him most but we are staying with this for now.
04-06-2016, 09:41 PM   #8
Rrahman
 
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My daughter's GI says she has nothing against SCD but doesn't believe it can cure her. It's true there is not enough evidence but reading about the studies done on SCD gives me and my husband plenty of hope. Probably, SCD in combination with med is the answer.
We also tried Peptamen Jr. but she couldn't tolerate it.
Thanks a lot for the web link. I'll check it out.
We are also in NJ and go to CHOP - they have a lot of diet studies. That's one place you could try if you want a dietician who knows about IBD and diet.

I will say that our GI at CHOP said there was not enough evidence that the SCD worked. She said the only diet that we know works is EEN - and at CHOP, kids are usually given semi-elemental formula for it (Peptamen Jr or Pediasure Peptide). Some kids drink the shakes and others use an NG tube.

However, we did talk to her about the SCD 3 years ago and haven't asked since, since my daughter is doing well on medications. She does still get formula (Neocate since she could not tolerate Peptamen Jr) as part of her diet.

There are more studies about diet now and CHOP has definitely been focusing on nutrition.

There are some presentations on diet here:http://www.chop.edu/health-resources...s#.VwWV42OFk_0
04-06-2016, 10:01 PM   #9
Rrahman
 
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It's amazing how different people react differently to a certain med or food. My daughter also tried EEN (Peptamen Jr.)according to her nutritionist's suggestion but her stomach didn't tolerate it. Now she is on SCD. We are also doing research on AID.
Once her month long Flagyl course is over we'll consider putting her on Remicade. Who knows which one will do her more harm (or good). We just feel so helpless sometimes. It's good to know there are others who can relate to our concerns.
Thank you so much for sharing.
I am crazy obsessed with diet.

My older daughter was too severe to start with that and once on Remicade, I didn't want to chance taking her off to try diet. WEedid have trouble tapering steroids at the beginning so we used EEN to get her to a good solid remission so Remicade could take over from there. She has remained in remission since. We used a clean diet approach with O and she really responds. While Remicade definite maintains a remission of sorts, the clean diet gave her an added boost with weight gain, energy etc. At the time our GI didn't really believe in diet but after seeing the effect it had for my daughter and what happens when she goes off he is a believer of diet to complement meds.

My second daughter was more mild. We were able to induce remission with EEN, however, we also started her on Methotexate. Once the Exclusive period was over we used a strict diet. Within weeks her inflammation returned, even on Mtx. We then added Entocort, which didn't get her to remission. Another round of EEN worked and then we used the IBD - AID diet (based on the SCD diet) with slow reintro, again within weeks her inflammation returned. Unfortunately the diet approach didn't work for my daughter but then again it looks like even the med she is on won't work either.

I have weekly chats with the dietician at our hospital. To date there are no studies that prove endoscopic mucosal healing using diet alone. Plenty of symptom resolution though. It is however becoming the focus of much research and attention.

The best diet approach I have seen to date is a period of exclusive enteral nutrition followed by a defined diet with a very slow reintro of foods and foods not to exceed 50% of the diet...formula being the other 50%. The other approach is a month long period of EEN followed by slow reintro of regular diet for another 2 months and then back to EEN and so on.

Maya is right in that CHOP is doing a lot of the research and practice on these methods.

I also agree that your daughter does not seem to be in a deep remission...although she could be if these symptoms are just an IBS or gastroparesis overlay but the only way to determine that would be scopes and imaging.

Good luck with your journey and keep us posted!
04-07-2016, 10:16 PM   #10
Sudsy
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My older daughter was on strict SCD for five years. It was GREAT for her and she was able to be totally off meds for well over two years (with frequent checking on labs, etc). While it was quite hard to follow the diet so strictly (birthday parties were extremely challenging, as she was between 8-13 when she followed SCD), it was truly amazing to see her so healthy.

When she was 13 she decided she wanted to be able to go for pizza and ice cream with her friends, and slowly transitioned off. I kept making SCD yogurt for the next few years (the one thing I recommend if people are going to try only one SCD thing).

Are you on the Pecanbread Yahoo Group? Very helpful. Also, since everyone there is using SCD you will only get positive feedback about it

Good luck figuring it out and may all our kids soon now complete good health.
__________________
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....
04-07-2016, 11:40 PM   #11
Maya142
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My daughter's GI says she has nothing against SCD but doesn't believe it can cure her.
Unfortunately, nothing can "cure" Crohn's. Meds can keep it in remission but they cannot make it go away. For a certain subset of people, perhaps diet can keep it in remission too (I don't think that has been proven yet but I may be wrong about that - except for EEN which can definitely induce remission) but nothing can "cure" it and make it go away forever.

Hopefully there will be a cure in the future.
04-08-2016, 10:00 AM   #12
CrohnsDadNJ
 
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My son's GI introduced us to SCD, and suggested we try it. It was as a complement to traditional therapy (prednisone to tamp down flare and Remicade 8 week dosing schedule), not a substitute.

We found SCD a bit too restrictive, so we are using IBD AID. Its a derivative of SCD. http://www.umassmed.edu/nutrition/ibd/ibdaid/

Yes, there's a lot of research ongoing about diets and IBD. In addition to CHOP and UMass, Seattle Children's Hospital recently sent around their (promising) initial results of a study of SCD in kids to various pediatric GIs; its pre publication, I believe. PCORI just recently gave $2.5 million to CCFA to study SCD and Mediterranean diets for IBD patients. There's no definitive, large scale studies establishing robust benefits so far. The mostly encouraging results are narrowly defined and small sample size studies.
04-09-2016, 11:17 AM   #13
Rrahman
 
Join Date: Apr 2016
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SCD seems to work for our daughter. We started SCD last year but didn't stay on it strictly, allowing occasional illegal food. After her flare in Nov. 2015 we put her back on SCD and has kept her on the diet since. I make all her food from scratch, make SCD yogurt. She is not on medication but when having a flare she's put on a month long Flagyl course. That works for her. She is on Flagyl now. Her flare started on April 4, four months after her last flare. It was heartbreaking for me. But with SCD we have to be patient. I will explore the Pecanbread Yahoo Group.
Thanks a lot for sharing. Your daughter's story is very encouraging. I hope your other kids also respond to SCD well.
My older daughter was on strict SCD for five years. It was GREAT for her and she was able to be totally off meds for well over two years (with frequent checking on labs, etc). While it was quite hard to follow the diet so strictly (birthday parties were extremely challenging, as she was between 8-13 when she followed SCD), it was truly amazing to see her so healthy.

When she was 13 she decided she wanted to be able to go for pizza and ice cream with her friends, and slowly transitioned off. I kept making SCD yogurt for the next few years (the one thing I recommend if people are going to try only one SCD thing).

Are you on the Pecanbread Yahoo Group? Very helpful. Also, since everyone there is using SCD you will only get positive feedback about it

Good luck figuring it out and may all our kids soon now complete good health.
04-09-2016, 12:11 PM   #14
my little penguin
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So Rrahman
I am confused your last post you said it was working but your dd is on flagyl for a month at a time
Our Gi maxed out at 14 days.

So how many flares has she had since dx and how many rounds of flagyl ?
How has her blood markers /scopes /imaging been since dx and staying on scd ?
How has her weight and growth been?

These are things that show treatment is working or still working kwim.
04-09-2016, 04:28 PM   #15
Rrahman
 
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You might be right: there is no "cure", but I'm keeping my hopes high and do all I can not to aggravate her condition. I do believe in the healing power of food. My daughter tried EEN but her her stomach couldn't handle it. There is no easy way out for us I guess.
Unfortunately, nothing can "cure" Crohn's. Meds can keep it in remission but they cannot make it go away. For a certain subset of people, perhaps diet can keep it in remission too (I don't think that has been proven yet but I may be wrong about that - except for EEN which can definitely induce remission) but nothing can "cure" it and make it go away forever.

Hopefully there will be a cure in the future.
04-09-2016, 04:42 PM   #16
Rrahman
 
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Staying on SCD can be quite challenging. I also explored AID and tried adding miso to my daughter's diet but it didn't go well.
Good to know people started thinking out of the box and focusing on the "cause" of problems.
Thanks for sharing.
My son's GI introduced us to SCD, and suggested we try it. It was as a complement to traditional therapy (prednisone to tamp down flare and Remicade 8 week dosing schedule), not a substitute.

We found SCD a bit too restrictive, so we are using IBD AID. Its a derivative of SCD. http://www.umassmed.edu/nutrition/ibd/ibdaid/

Yes, there's a lot of research ongoing about diets and IBD. In addition to CHOP and UMass, Seattle Children's Hospital recently sent around their (promising) initial results of a study of SCD in kids to various pediatric GIs; its pre publication, I believe. PCORI just recently gave $2.5 million to CCFA to study SCD and Mediterranean diets for IBD patients. There's no definitive, large scale studies establishing robust benefits so far. The mostly encouraging results are narrowly defined and small sample size studies.
04-09-2016, 07:27 PM   #17
Rrahman
 
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Hi. This is my daughter's fourth round of Flagyl in one year. We started SCD last year but didn't follow it strictly, allowing occasional outside food. After her last flare on Nov. 2015 we put her back on SCD and she was symptom free for 4 months. That was a positive sign. She is not on any med other than Flagyl during a flare.
Her present flare that started beginning of April left me feeling devastated. I went back to reading Breaking the Vicious Cycle and found out that two or three months after starting the diet a relapse is sometimes possible. After getting better, recovery is usually steady with minor setbacks for the first year. Got my hope back.
About her weight, she is underweight but she has been on the lower end all her life.
She has her labwork done frequently and during a flare her CRP level is ofcourse high.
Thanks for your concern. Appreciate it.
So Rrahman
I am confused your last post you said it was working but your dd is on flagyl for a month at a time
Our Gi maxed out at 14 days.

So how many flares has she had since dx and how many rounds of flagyl ?
How has her blood markers /scopes /imaging been since dx and staying on scd ?
How has her weight and growth been?

These are things that show treatment is working or still working kwim.
04-09-2016, 08:57 PM   #18
pdx
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I am sorry to hear about your daughter's flare. Like many others on this forum, I believe that SCD works for some kids, but not all, or maybe not in all situations. When my daughter was diagnosed, she was very ill and started Remicade immediately. We decided to try the SCD diet at the same time, since we had read many promising things about it. We followed it very strictly for a month, and it was amazing how fast it resolved her external symptoms (pain, nausea, diarrhea). However, she continued to lose weight that month, and her blood inflammatory markers continued to go up. Our doctor finally told us that we needed to choose EEN or TPN, since my daughter was so malnourished that her body wasn't going to be able to heal itself no matter what treatments she did.

She was on EEN for 8 weeks, and gained 20 pounds during that time. She continued to gain weight on supplementary EN for several more months, and by that time, her medications (Remicade and methotrexate) had finally kicked in. She's not on the SCD any more, although I continue to make most of her food from scratch, use honey when I need a sweetener, use bone broth in many recipes, etc.

She's now up 40 pounds from her lowest weight last year, growing consistently, starting puberty, and her inflammatory markers are all normal.

Sorry for the long response, but when you mentioned that your daughter had always been underweight, it reminded me so much of my daughter. She had been underweight for years, but we just assumed that that was how she was. While SCD took away many of my daughter's symptoms, in her case, it took EEN, Remicade and methotrexate to actually heal her intestines. It's been amazing watching her grow once that happened.

Good luck with whatever treatment you choose. I know the decisions are so hard to make.
__________________
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
04-09-2016, 09:11 PM   #19
Maya142
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I wanted to add - you said your daughter could not tolerate Peptamen Jr. Mine couldn't either, she had diarrhea about 10 times a day when she was on it.

Some kids need a more broken down formula - an elemental formula. We switched to Neocate. Elemental formulas like Neocate and Elecare do taste bad (worse than Peptamen Jr) and so my daughter did use a feeding tube.

My daughter gained 23 lbs with the Neocate. She has also always been a small kid, but she had become severely malnourished and very underweight in the last two years. She was actually hospitalized 3 separate times for that and even developed refeeding syndrome when we started the tube feeding (luckily, she was in the hospital for that and they were able to monitor her electrolytes and she was fine).

Now she is at a healthy weight, still gets formula at night but eats during the day and feels MUCH better. She has more energy (she was so malnourished and weak that she was essentially in bed all day).

These decisions are very difficult - we also agonized and agonized about putting our daughters on medications. But at some point, the disease became scarier than the medications.

If your daughter is flaring 4 times a year, her disease is not under control. The worry is that over time, scar tissue builds up because of the inflammation and the only way to fix that is surgery. Kids can also have inflammation and be completely asymptomatic, so even if she feels well, it doesn't necessarily mean everything is ok on the inside. The high CRP points to ongoing inflammation.

Good luck with whatever you choose.
04-09-2016, 09:25 PM   #20
pdx
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I wanted to add - you said your daughter could not tolerate Peptamen Jr. Mine couldn't either, she had diarrhea about 10 times a day when she was on it.
Mine too. First she tried drinking Pediasure, Ensure, and Boost, and those gave her stomach pain. Then she tried Peptamen Jr via NG-tube, and that made her nauseated. She finally ended up on adult Peptamen 1.5, via NG-tube, at a very slow rate. It took us several weeks to find a formula that worked for her. Lots of trial and error.
04-09-2016, 09:33 PM   #21
my little penguin
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Yep same here
Pre dx Ds stopped gaining weight then started losing it
He started kids boost but didn't even tolerate that after a bit
Tried 6 different formula including elemental
He started EEN at age 7 on peptamen Jr orally
He is back to drinking 50% of his calories from peptamen Jr
Plus restrictive diet ( no gluten no lactose low fiber low fat plus lots of other stuff )
Plus humira and Mtx

Oh and his Crohn's disease per scopes is mild btw
No ulcers or fistulas or structures
04-10-2016, 08:28 AM   #22
DDA
 
Join Date: Apr 2016
Location: los angeles, California
My daughter was diagnosed with Crohn's in Dec. 2013. The doc wanted to put her on med but my husband and I managed to keep her off the typical Crohn's med so far, fighting with the doctor and stressing on food. She has been suffering from flare ups every now and then and is being treated with Flagyl. When having a flare up she is put on Flagyl for a month and it seems to work for her.
We are big on healthy eating, organic food, grass-fed products, and juicing. Since her diagnosis, we experimented with different diets and ended up with SCD diet (grain-free, sugar-free, lactose-free). After putting her on SCD her flare ups are lot less frequent than before. This time she was symptom free for over 3 months. She's back on Flagyl from yesterday.
what is her vitamin D status? have you tried MCT oil?
04-10-2016, 08:31 AM   #23
DDA
 
Join Date: Apr 2016
Location: los angeles, California
vitamin D deficiency is the underlying cause of IBD, you need to get a 25(OH)vitamin D test
04-10-2016, 08:39 AM   #24
Rrahman
 
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My biggest fear is whether we are doing the right thing or harming her unknowingly. Whatever we are doing it is my husband and my decision, not hers. That makes it even worse. SCD is not letting her gain weight with no carb. We tried putting her on EEN (Peptamen JR.) but her stomach didn't handle it well. I don't understand why it works for so many and not her.

I'm scared even to think of the aftermath of putting her on Flagyl so frequently. And I have such mixed feelings about Remicade. I wish we could let someone else decide for us, like the doc. Her follow up checkup is next month. Will see what the doctor says.
Glad to know your daughter is doing well.
Thanks for sharing.
I am sorry to hear about your daughter's flare. Like many others on this forum, I believe that SCD works for some kids, but not all, or maybe not in all situations. When my daughter was diagnosed, she was very ill and started Remicade immediately. We decided to try the SCD diet at the same time, since we had read many promising things about it. We followed it very strictly for a month, and it was amazing how fast it resolved her external symptoms (pain, nausea, diarrhea). However, she continued to lose weight that month, and her blood inflammatory markers continued to go up. Our doctor finally told us that we needed to choose EEN or TPN, since my daughter was so malnourished that her body wasn't going to be able to heal itself no matter what treatments she did.

She was on EEN for 8 weeks, and gained 20 pounds during that time. She continued to gain weight on supplementary EN for several more months, and by that time, her medications (Remicade and methotrexate) had finally kicked in. She's not on the SCD any more, although I continue to make most of her food from scratch, use honey when I need a sweetener, use bone broth in many recipes, etc.

She's now up 40 pounds from her lowest weight last year, growing consistently, starting puberty, and her inflammatory markers are all normal.

Sorry for the long response, but when you mentioned that your daughter had always been underweight, it reminded me so much of my daughter. She had been underweight for years, but we just assumed that that was how she was. While SCD took away many of my daughter's symptoms, in her case, it took EEN, Remicade and methotrexate to actually heal her intestines. It's been amazing watching her grow once that happened.

Good luck with whatever treatment you choose. I know the decisions are so hard to make.
04-10-2016, 08:46 AM   #25
Rrahman
 
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She takes vit. D3 5000 iu (Physiologics) 5 days a week and her D level is within normal range. This week we are also giving her Cod Liver oil along with D for better absorption. I havn't tried MCT oil but will explore.
Thanks for the info.
what is her vitamin D status? have you tried MCT oil?
04-10-2016, 09:50 AM   #26
Rrahman
 
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Forgot to mention, my daughter's vit. D level was low when her problem started. It steadily went up after starting D3 supplement last year.
Thanks.
vitamin D deficiency is the underlying cause of IBD, you need to get a 25(OH)vitamin D test
04-10-2016, 10:09 AM   #27
my little penguin
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Did you try any other formulas ?
Peptide or elecare or neocate or vionex or ...
There are a lot out there
Also was she in a full flare when you tried ?
You said her stomach didn't tolerate it
How ? Did she vomit ? Or just get nauseous ?
Symptoms don't resolve with EEN for a while similar to steriods it can take up to 8 weeks to start to work .
Did she try kids boost or pediasure ?
Was it taste ?
Did she use an ng tube ?
Have you discussed the options with her ?
At 11 our Gi openly discussed options with Ds to get his buy in which is important
Lack of weight gain is a red flag for moderate disease in kids by itself without anything else

Since she is on full scd are you and your husband also eating scd ?
Are you tracking calorie intake with an app like my fitness pal to determine if she simple isn't eating enough ?

I get the whole lets just use foid to fix this honest
5 years ago I didn't even want Ds to take Pentasa ( which is useless by itself btw)
And with each med change I was in tears wondering if it was decision

We have tried it all with Ds and still looking for the magic
Including many many food diets
So your not alone

Learning when something isn't working and it's time to change is the hardest of all
04-10-2016, 12:18 PM   #28
Rrahman
 
Join Date: Apr 2016
Location: Middlesex, New Jersey

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She hadn't tried any other formula but Peptamen Jr. (other than organic Muscle Milk that we tried as a boost probably more than a year ago, but she hated it). I believe she was having a flare when she tried Peptamen after consulting her nutritionist. My daughter is an extremely picky eater and doesn't accept any new food without much fight.
The rest of the family is not on SCD but we drastically cut down on carb after putting her on SCD. I don't keep calorie count. Try to give her high calorie food: grass-fed whole milk yogurt that I make, grass fed aged cheese, grass fed butter, nut butter muffin, nut flour crepe, grass fed beef, organic chicken, organic egg, wild caught fish.....My life is basically wrapped around her finger. But obviously I'm not doing enough otherwise she wouldn't be sick. Her doc discusses everything with her (she's 15) .We are thinking of starting Remicade if she wants to. Might make me cry after all my hard work to keep her off meds.
04-10-2016, 12:41 PM   #29
Clash
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I understand your fear of meds but the damage that can occur with under controlled or uncontrolled CD can be serious. It doesn't matter the treatment regimen ie diet or meds, if inflammation continues to simmer it creates scar tissue that can lead to narrowing, obstructions and surgeries. So, no matter the route you choose it's important that the result be keeping the bowel healthy, if over a period of time this isn't being achieved then it's time to reevaluate, adjust and move on. It doesn't matter if it's diet or med.

As far as EEN or EN I totally understand, my son will not drink boost or ensure(he gags it all up) and couldn't take in peptamen orally so he used an ng tube. He placed the tube each night and took in formula by pump while he slept then removed the tube before heading to school. This was in an effort to gain weight before surgery so his EN was only supplemental not exclusive.

I hope your daughter finds remission quickly with whatever treatment you decide on. Hugs.
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
04-10-2016, 01:02 PM   #30
my little penguin
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Big hugs
Your not making your Dd sick crohns is
Unfortunately you can chose a meds or a diet and it still not work
Btdt got a few t shirts for each med or diet

Add in your Dd is 15
That changes things
You really need her buy in otherwise it won't work
Fwiw Ds started remicade at the ripe old age of 8
And was switched to humira at 9
Sometimes the disease choses for you unfortunately


Keeping the intestine as healthy as possible for as long as possible is the key
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