Crohn's Disease Forum » Parents of Kids with IBD » New here, mom of VEO IBD

11-28-2018, 02:20 PM   #1
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New here, mom of VEO IBD

Hi All,
I am brand new here and not sure if this follows the normal forum protocol, but I just wanted to introduce myself and tell some of my story. I have a son who has been diagnosed with IDB and his doc is 85% sure it's Crohn's but since he's only found the inflammation in the colon so far. We feel like he is receiving great care at UCSF, but I am wanting to educate myself more so I can help him better because he still has not achieved remission, or even a definitive diagnosis.

My son's journey towards diagnosis started 18 months ago when he had a major flare up and didn't eat, drink or sleep for close to two weeks because he was in agonizing pain. He lost 10% of his body weight and was a month shy of his 5th birthday at the time. We were in and out of hospitals and were finally diagnosed with mesenteric adenitis and told it was likely caused by a virus and would go away in a couple of weeks or a few months max. When that didn't happen they did an endoscopy/colonoscopy and MRE which is when they found the inflammation in the colon. About 5 months later (6 months from start of flare) he started Sulfasalzine. We've been on that ever since (December will be a year) and he is stable but still in daily pain. His latest scope in August looked pretty clear from pictures, but the biopsies showed inflammation. It seems like there is a disconnect between his pain level and what his colonoscopy showed.

Anyway, I am trying to figure out where we go from here and what else we should be considering. They just increased his dosage again and we're hoping it will help, before bringing him in for another MRE, but I feel like that's probably next on the docket. His doc said he could get him into the SCD study if we wanted, but he didn't seem to recommend it. Our next appt will be with the VEO IBD group there, so maybe that will help open up more options for us. I hate to see such my little guy having to live with constant pain.

Has anyone with young kids had success with dietary changes? Or with alternative medicine? I took him to a naturopath, but it's hard to say if it's made much of a difference so far.

Sorry for the way too long post and thanks for reading and any input you have. This looks like an amazing community!

11-28-2018, 02:56 PM   #2
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Location: Arcata, California

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Hi Julia,
I got your private message and wrote back to you, but it responded that your inbox is too full and will not accept anymore messages. So I am writing to you here.

You are bound to get many responses. There are many incredibly compassionate, helpful, and experienced parents of kids w/IBD on here. I never did get much response about anything homeopathic or dietary, especially where kids are concerned. With adults, yes, I have had first hand accounts of diet working with UC and Crohn's. I tried the SCD when my daughter was very young pre-diagnosis, and I think it helped, but it did not solve it. We still ended up in the hospital with blood transfusion and sever anemia. I strongly believe diet plays a HUGE role in helping their intestines heal.

I am so sorry to hear of your sons pain. What a lot for a little guy to handle. It is terrifying to see our kids in any kind of discomfort or pain, which we cannot alleviate.

I am not going to go into all the different medication options, because I am by far no expert. I will leave that to the forum monitors and such. I can tell you though, this will be a place to receive good information, and you will come away from this forum more educated. I have walked into my dr. appt.'s armed with many more detailed questions than I otherwise would have, w/o this forum and the kind people behind it.

I am open to any questions you have for me, and love to have any kind of support. I wish there was an IBD support group in my area for parents, but I live in a very rural, isolated place. It makes this all that much more challenging. Thanks for reaching out.
Mother of C(4)
Dx: 10/7/16 Crohn's disease
Previous Meds and Diets:
SCD, Mesalamine, Methotrexate, Prednisone
11-28-2018, 06:45 PM   #3
my little penguin
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Sorry your here
Ds was dx at age 7 and now is 15 so we have been here a while
SCD works better in adults simply because they donít have to consume large quantities of calories in order to gain and grow.
Most of the big kiddie hospitals donít recommend it anymore for growing kids since they lose weight and donít grow

That said
Een (exclusive enteral nutrition) is formula only diet
Typically done for 6-8 weeks of formula only
No solid foods
Most Crohns kiddos need semi elemental formula
Peptamen Jr or peptide
These taste bad but can be done orally without a tube
Some still need more broken down formula such as elecare jr or neocate jr
These are amino acid based formulas (easiest to digest only need a few inches of healthy intestine )
Ds did een 3-4 Times since dx to reduce inflammation

Diet helps but medicine typically is needed as well
Since the younger the dx the more severe the disease path tends to be

Adults are dx with one type of Crohns
But kids get worse over 10 years (remember most kids are dx at age 15 not age 5)

Veo ibd is an evil entity all on its one
What works in older kiddos doesnít work in veo kiddos
Genetic testing is highly recommended for those kiddies

More later
DS - -Crohn's -Stelara -mtx
11-28-2018, 07:18 PM   #5
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EEN (a diet that's almost all Pediasure in our case) has worked great for my son. He's been on it for 7 months now. Even before diagnosis I think a bottle or two a day was helping him.

Remicade, Humira, Stelara, etc of course also help a lot of people. In my son's case, Remicade alone wasn't enough despite adequate drug levels.

I think antibiotics are probably underused as well. 8 weeks of azithromycin plus metronidazole corresponded with a nice decline in a stubbornly high sed rate for my son.
11-28-2018, 07:30 PM   #6
my little penguin
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As far as treatment 5-asa are the weakest med out there
It has not been shown to effective in Crohns but can help woth UC

Itís a pyramid of meds
Some start at the top of the pyramid (most effective but most risk )
Other start at the bottom (least effective least risk )

5-asa is the bottom
Immunosuppressants (methotrexate -mtx) is next step up
Mtx is used in jia for kids as young as 2 and has been for years
Next in line is biologics
Typically remicade and humira

For ds we tried
Pentasa first
Then 6-mp
Then mtx
Then after bouts of vasculitis he was switched to remicade
One year after dx at the ripe old age of 8
I was in tears

He also did een at dx and kept of 30% of his calories afterwards with Peptamen Jr

After remicade came humira
Them mtx was added due to arthritis
Now at age 15
Ds takes
Stelara plus methotrexate and 50% of his calories from elemental formula (neocate jr orally daily no tube )
He also eats whole foods organic
No red meat or pork
And avoids emulsifiers etc...
Takes prescription strength probiotics (vsl#3)

So for him Diet is big
And meds are also needed
Itís a combo
But we did come to this decision easily
Or quickly
I will say biologics stopped the daily pain
Healed his gut
And let him grow the same as his peers

They also gave him a healthy happy looking intestine
After 8 years which is against the odds
Odds of surgery in kids is 75% after 5 years
Biologics reduces that number to 40% (I think )

The goal is to find the right meds /diet
That work for your kiddo and keep their gut as healthy as possible as long as possible
Itís different for everyone
And a very difficult decision as a parent

Tagging crohnsinct
11-28-2018, 10:37 PM   #7
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We have a daughter, H, who was diagnosed at age 3, so she is VEO-IBD. She is now 8.

We also have a son who was diagnosed not quite a year ago. He was 9 at diagnosis. He is early onset but not VEO.

We have 5 other non ibd kids. So, things could be worse!

We started out on Sulfasalazine too. H had strictly heavy colonic disease on first scopes. Once the biopsies confirmed Crohn's, we were told to drop Sulfasalazine as it is not better than aspirin for Crohn's.

By the time she was 4.5 we had gone up the med ladder to Humira which has given her a decent normalish childhood. We used EEN at the beginning for a couple of 6 week sessions. It helped us avoid steroids.

We have used a naturopath but found that the naturopath was not knowledgeable in the area of pediatric IBD.

We also did many months of scd and at another time many months of vegan diet. I personally felt pretty good on these diets and H seemed to thrive on the vegan diet but she stopped growing.

Now we stick to a mostly organic whole foods diet.

My son is flaring and can only drink formula right now. This has been the case with our daughter too in the past.

Welcome! I received so much help here and still do.
11-29-2018, 02:52 PM   #8
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Welcome to the forum. I'm sorry that your son is still in a lot of pain. I agree that another MRE might be needed to make sure that your son doesn't actually have inflammation further up than the scopes could reach.

We tried strict SCD right after my daughter's diagnosis. She had already started on Remicade at that point, but it wasn't working for her yet, so we hoped we could jump start healing with diet. SCD did seem to ease some of her pain, but it didn't help with healing her intestines--she kept losing weight and ended up in the hospital with perforations in her small intestine. She finally started healing after we added EEN (via NG tube), budesonide, and methotrexate to the Remicade. After a couple months of those treatments, Remicade was finally able to take over.

I hope that your appt with the VEO-IBD group is helpful.
Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
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, 3/24/18-5/18/18
Methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
11-29-2018, 04:03 PM   #9
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Thanks everyone, I really appreciate you sharing your perspectives, experiences and resources. I feel like I have SO much to learn and it's really overwhelming.

I will inquire with the dr about elemental formula, although I suspect it will be hard to convince my son to drink it. Any recommendations on what to try that kids tend to tolerate?

mylittlepenguin do you feel like the probiotics are helping? My son's dr mentioned vsl#3 and I think I may try them. We tend to eat mostly whole food organic anyway and have reduced red meat because we noticed it triggered pain.

mylittlepenguin thanks also for those links, they are very helpful. I will look into that study as well - any insight into it?

In terms of meds I'm not sure why the dr is staying the course on the sulfasalazine. He just keeps upping the dosage (from 500 to 600 and now 700 mg 2x/day). I think it's perhaps because clinically it looked like it was working on his colon, but it doesn't seem to be working based on pain levels.

We really love our dr, but I'm wondering if maybe we should get a second opinion, although we may get that anyway in the VEO team. Any input on the importance of going to another major teaching hospital for a second opinion?
11-29-2018, 06:21 PM   #10
Jelly loves Peanut butter
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Sending 🤗 hugs! Sorry you have to go down this winding road. You will find a lot of support and great information here. I would suggest to keep reading and researching everything you can but keep in mind it will be very overwhelming. My son was diagnosed 2 years ago with IBD and it still feels like I am always learning something new all the time. Welcome and hope you get some answers soon.💜💜💜

Mom of Lincoln (age 12)

Dx. Crohn's 9/2016 (age 9)
Dx. Juvenile Spondyloarthritis 9/2017 (age 10)

6-Mp 9/2016-10/2017
Remicade started 9/2017
MTX started 9/2017
11-29-2018, 11:37 PM   #11
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Regarding formula types, there are elemental, semi-elemental, and polymeric. Elemental apparently tastes terrible, most people find semi-elemental distasteful, and most people find polymeric ok/good. If you've never tried these and you don't have some other need, you probably want to start with polymeric. Studies indicate that all are comparably effective for Crohn's. However, if you find that your son needs elemental or won't drink enough of the polymeric or semi-elemental, tubes are available to help.
11-30-2018, 01:35 AM   #12
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Probably should have checked the forum before responding to your PM

Few things:

Why was he left with no treatment for months? I might be missing something. I will go back and read your story.

I agree that when checking to see if he has improved they should have repeated the scopes AND imaging and I would want a second MRE.

SCD diet: SCD diet has a good success rate with symptom relief. However, there have not been any studies (that I know of and I have a registered dietician in our GI's office updating me often) that have shown that is it able to induce endoscopic remission. Clinical yes but scopes do not show mucosal healing. There is however, one member here who has a son who was managed on SCD alone for years and his healing has been confirmed by labs and scopes. She hasn't been on much later but I will page Optimistic just in case she sees this.

Ditto all the sentiments on sulfasalazine but you probably already know that.

Pain: my pm tells you some of my thoughts about that but reading the background makes me think about something else also. If all his imaging and labs come out fine and you research IBS, SIBO, constipation, gastroparesis, food allergy etc there could be another cause. Sometimes our kids have such a long road to dx and remission and live with pain daily that they get a condition called "pain amplification". My younger daughter had/has this. The way it was explained to me is that the body get so used to firing off pain signals that even when you remove the stimuli for the pain it can't stop or that it has an over active response to a lower level of pain. Maya142 can probably explain it better. There are a lot of things you have to investigate before I would let them put his pain down to pain amplification but if that is where you eventually find yourself, Stanford has a very well respected pain clinic.

I am a crunchy granola type and super into diet and nutrition etc. We have seen two world renown functional medicine md's who have used natural methods to treat cancer, heart disease, thyroid disease etc. When they met us they told us the drugs are necessary. However, we use diet to support overall health (liver, kidney etc). There was a time that Remicade was doing a really good job but when we cleaned up my daughter's diet her health really soared. Our old GI never thought diet mattered much but now he is a believer. But in terms of handling the disease on it's own....not so much. If we so much as decrease my daughter's dose of Remicade a little she flares.

EEN is a good alternative to steroids for inducing remission. Supplemental EN has also proven to help keep kids on meds in remission longer. Most kids at dx are put on steroids or EEN to get them into remission quickly and also because most meds take a while to work. Sometimes, the meds alone are not able to get the body fully healed and if you add the EEN or steroid to do the heavy lifting, you can then hand the med a well healed body and they work better. This happened for my older daughter with Remicade. She had been on it for 4 months and she just wasn't quite there. The GI wanted to add methotrexate but we opted for EEN. 6-8 weeks and she was good as new. We slowly added back in food and she was in a good solid remission for years after. Remicade just need a little help. Perhaps,the sulfasalazine could use some help?
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
11-30-2018, 12:36 PM   #13
my little penguin
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My best advice
Second opinion at another large university hospital
We did this not once but twice for DS
Extremely helpful to get a fresh set of eyes

Een formula - most ped GI recommend semi elemental
Such as peptamen jr or peptide
These can be covered under insurance
Not as prescription but under infusiontherapysuppiles
By your durable medical equipment clause
Your gi office should have plenty of samples

Try the elemental samples first
Just like baby food no kiddo will try veggies if you give fruits first
So by time you get to semi elemental
It tastes good

Chocolate syrup is your friend
Cold (but not frozen) lots of crushed ice
Use the fancy coffee cups with lids and straws
To by pass taste buds
Plug the nose
Expect tears
Planfir rewards
Takes about 3-5 days to where they can drink it
Two weeks and they can chug one
Ds was only 4í2 at one point and 50 lbs
Over 8 years due to good meds and formula
He is now 5í8Ē(and growing rapidly now )- 150 lbs

Ds has a lot rectal inflammation and colitis like symptoms so for him vsl#3 does help
We stoppped it once or twice and yep still helping

Above all seek a second or even third option
At another hospital
In person or by records review
Good luck

Sulfanizine really isnít helpful in Crohns cases
11-30-2018, 12:37 PM   #14
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Thanks for all of the info Crohn'sinct! I will respond to your PM as well, but yes, there was a 6 month delay from major symptom onset and medication. Flare was in June, endoscopy/colonoscopy in July showed inflammation in colon and ileum, MRE looked clear but he wasn't able to hold still during the contrast portion of it. We were primarily seeing residents at that point and at our first apt with the head IBD doc (who you know) in December he prescribed the medication. It was like they were waiting for the inflammation to self resolve. I can't say why else he was left with no meds for so long except that they weren't convinced it was IBD. He never had BM related symptoms which maybe makes it a little harder to diagnose.

I am not looking for diet to replace meds, just to help with the pain level in tandem with meds. I would love it if you would be willing to share details of what dietary changes seemed to help.

I am going to move forward with the MRE and see if we can get some answers there. Any tips on how to chill them out so they can tolerate laying still for an hour? I will ask the doc about getting a prescription to help.
11-30-2018, 12:54 PM   #15
my little penguin
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Childrenís hospitals should have child life to help with the MRE
Some have movie goggles
These can help as well

Six months without treatment
Please seek a second opinion ASAP
11-30-2018, 01:52 PM   #16
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Six months without treatment
Please seek a second opinion ASAP

working on it
12-01-2018, 08:20 AM   #17
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Yes - most definitely get a second opinion. I am so sorry to hear your little guy has had such a hard time.

Like crohnsinct said, pain is complicated. First, there is acute pain, which is like the pain from stubbing your toe or breaking your leg or having surgery. This kind of pain responds well to most analgesics - anything from Tylenol, to NSAIDs to opioids.

Then there is a chronic pain, which is a whole different beast. When a child (or adult) has been in pain for a long time for whatever reason, then the nerves are so used to sending pain signals, that they continue to do so even once the cause of the pain is gone (has healed, disease is in remission etc). And pain receptors in the brain change too and become more sensitive to pain signals and so the child continues to feel pain - sometimes severe, debilitating pain - even though initial cause of that pain is gone. For some kids, even the smallest stimulus can cause severe pain - like lightly touching the area, or even a breeze.

For this kind of chronic pain, called amplified pain or central sensitization is not easily treated unfortunately. Number 1) would be to make sure the IBD is controlled and there isn't residual inflammation somewhere. A pillcam or MRE would show inflammation in the small bowel.
2) Keep life as normal as possible. Even though he is in pain, he should be going to school, playing with his friends etc. And mostly importantly:
3) Remember that this could change. As you find a therapy that REALLY works well for your son's IBD (it could be one med or a combination) and he had been in deep remission for a while, the pain may actually eventually go away.

Typically, they try not to use meds for this kind of pain. For severe cases, there are inpatient pediatric pain rehab programs where they teach children how to function - how to live and how to live well with pain. My daughter did one after years of arthritis pain - she could barely function due to pain - missed a lot of school, had become very underweight. In her case, the uncontrolled inflammation made the nerves send more and more pain signals and once we controlled the inflammation (not remission, but inflammation is lower), the pain did not go away because the nerves kept sending the pain signals anyway and she became extra-sensitive to pain. This pain is very REAL - it's important to tell the child that you believe him about that.

The rehab programs are very big on getting kids to exercise because that provides natural pain relief (endorphins!) and desensitizes the nerves. So they do 4-5 hours of PT/OT/aquatherapy/psychotherapy and CBT among other things. They teach how to cope with pain.

All of this can be done outpatient - in fact, insurance won't approve a program unless you have done outpatient therapy (physical therapy and psychotherapy usually).

There is a great book that explains all this called "Conquering Your Child's Chronic Pain" which you can buy on Amazon. We were given it to read before my daughter did the program.

It's a great book and REALLY worth reading for anyone with a child who is in pain - chronic pain.

Are you close to Stanford by any chance? Because if so, you should DEFINITELY go there for pain management. It's one of the best departments in the country. They also have a pain rehab program.

In terms of IBD meds, yes, there is a pyramid. But now the "top down" method is favored because studies have shown that if biologics are given with three months of diagnosis, prognosis is better. I'll see if I can find that article.

Diet changes - we tried gluten free and saw no improvement. We have found out through trial and error that M needs low fiber/low fat food, though that is more for her gastroparesis.

Another thought - has anyone mentioned a motility disorder? Gastroparesis can cause a lot of pain. Is his pain after meals?
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
12-04-2018, 12:35 AM   #18
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EEN (a diet that's almost all Pediasure in our case) has worked great for my son. He's been on it for 7 months now. Even before diagnosis I think a bottle or two a day was helping him.

Remicade, Humira, Stelara, etc of course also help a lot of people. In my son's case, Remicade alone wasn't enough despite adequate drug levels.

I think antibiotics are probably underused as well. 8 weeks of azithromycin plus metronidazole corresponded with a nice decline in a stubbornly high sed rate for my son.
Pangolin, is it the normal grow and gain pediasure that has worked for your son?
12-04-2018, 12:45 PM   #19
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Have you been able to get in to see a different GI, crohnsinapa?

As for formulas, it varies. Some kids can tolerate polymeric formulas - those are regular Pediasure, Ensure, Boost etc. They taste best and come in lots of flavors. Some kids tolerate them GREAT and some kids, well, not so much.

In my daughter, they cause nausea, cramping and diarrhea.

So we went to a semi-elemental formula - Peptamen Jr. That tasted significantly worse, but my daughter was able to drink it. Unfortunately, she could not drink enough to even maintain her weight, so we went to an NG tube.

The other semi-elemental formula that is commonly used is Pediasure Peptide.

My daughter tried both. Try to get samples from your GI so your child can taste them. Some kids like one flavor and some kids like several flavors. My daughter liked chocolate and strawberry.

Also remember that an NG tube is NOT as intimidating as it sounds. Some kids are unable to drink enough formula. Some kids simply will not drink ANY formula. Our children's hospital teaches kids to insert the NG tube every night, do the feed at night (so they get all the formula at night) and then pull the tube out in the morning and go to school.

My daughter did that. She was a LOT older than your son, I would guess. For little kids, NG tubes are mostly commonly just left in place, though at our hospital, kids as young as 6 insert their tubes nightly.

It is a tiny, thin tube - like spaghetti. It's actually infant sized but is used for kids of all ages. It sounds VERY intimidating, but like everything with IBD, you get used to it and it's a lot less scary than it sounds.

My daughter was dreading the tube. She was hospitalized to start tube feeds since she was very underweight. The first night was tough - her nose and throat hurt and she was miserable. The second night, she inserted the tube by herself!

Within a week or so, she was inserting the tube in less than 10 seconds. She said that the tube was WAY better than drinking formula and she will never do that again.

She did have to move to elemental formula because she had diarrhea on Peptamen Jr. That is unusual according to our GI - she said most IBD kids tolerate semi-elemental formulas.

M did try drinking the elemental formula too and said it was AWFUL. She could barely get any down. She said it tasted and smelled like "stinky feet" . So anyway, we went back to the tube.

Once she was put on tube feeds, she felt a whole lot better. She was so malnourished and had no energy and had lost a LOT of weight when we started. She couldn't believe how much more energy she had on tube feeds and how much better she felt!

The things that helped us with drinking - make the formula cold and use a straw. We even tried making slushies out of the formula, we tried adding chocolate syrup - you can do lots of things to make it more palatable.

We also worked with an excellent psychologist who helped her deal with drinking the formula and then needing the tube.

I would try Pediasure and see if it causes an increase in symptoms. Hopefully it won't and it will help a lot with pain. But if it does cause symptoms, then I would try a semi-elemental formula. Semi-elemental formulas are expensive, so your GI should prescribe it so it is covered by insurance.
12-04-2018, 01:19 PM   #20
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Pangolin, is it the normal grow and gain pediasure that has worked for your son?
Yes. (The "with fiber" version seems equally effective)
12-05-2018, 01:22 AM   #21
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Maya142, I haven't gotten in yet with the other doc, but Crohnsinct has been a huge help with making some progress in that direction. I'm SO grateful!

We have been doing some of the Pediasure and he seems to be tolerating it so far, so that's great. Just using it suplementally for now to see if it has any positive effect. Will discuss at next appts.

Question for everyone who has had a kid get an MRE - have you had them done at the teaching hospitals or at an imaging center? Anyone researched the options? I have recently discovered our health insurance is terrible (it changed earlier this year) and am getting huge bills for everything $1500 for a blood test and don't get me started on the scopes). Anyway, obviously getting him the best care is priority #1 but if there are viable alternatives for some of the tests/imaging it's something that I need to look into at this point. Working on seeing if there is any path towards a better health plan but that may prove difficult. Are there any threads on managing the financial impact of this disease?
12-05-2018, 01:45 AM   #22
my little penguin
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Most states have supplemental insurance (medical assistance) where parent income isnít a factor
Having Crohnís disease tends to qualify you.
The fast and best method is to call the childrenís hospital and ask to speak to a social worker
The hospital can send it through quicker to the state than you can
Medical assistance covers all extras and copays your main insurance doesnít
It is very valuable once you start woth more expensive drugs
MA tends to cover drugs your kiddo needs that regular insurance may not

Imaging for little kiddos we stuck woth large university kiddie hospitals
Since reading a childís image is much harder than an adult
Equipment radiation dosing etc are all geared to kids

Good luck
12-05-2018, 02:25 PM   #23
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Ugh--so sorry that you're having to worry about the financial side along with your child's health. MLP's suggestion to talk to the hospital social worker about supplemental insurance is a great one, and definitely look at drug co-pay assistance programs if your son starts on biologics such as Remicade and Humira. We can help you navigate that if he does start those.

Also, check to make sure that you're not already over your max out-of-pocket expenses for this year. If so, your insurance should be covering everything. Related to this, since we're in December now, give some thought to when to schedule the MRE. If you're over your out-of-pocket max already, then try to schedule it this year. If you're not, it might make more sense to schedule it at the beginning of January. (Obviously don't put off a study if it's going to negatively affect your child's health, but you usually need to wait a few weeks to get scheduled anyway, and if you are choosing between Dec. 30 and Jan. 2, then it's worth thinking about the insurance ramifications.)
12-05-2018, 03:27 PM   #24
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Yes, definitely look into supplemental insurance from the state. Usually the GI dept. will have a social worker who can help you. As pdx said, if he is put on Remicade or something like that, there are programs to help with covering the copay - Remistart, I think?? Can someone confirm that?? It has been a long time since my daughters were on Remicade.

I am SO glad he is tolerating the regular pediasure. It certainly tastes a lot better than the semi-elemental formulas. The more he can drink (to replace meals), the better. His pain should settle down if most of his diet is formula.

SO glad you are working towards a second opinion!
12-05-2018, 03:30 PM   #25
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The Remistart program has been renamed and is now Janssen Carepath. Most GI departments are very familiar with the program and will fill out the paperwork for you. All you have to do is sign. Some will even file the claims on your behalf!
12-05-2018, 03:32 PM   #26
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Oh and I wanted to add - we also try to go the children's hospital or the hospital where my daughters' doctors are at (they are young adults, so one has transitioned to adult care and one is in the process). I trust the radiologists more there to read the results accurately.

We have did one MRI locally of my daughter's SI joints and the report said it was clean. However, it should NOT have been clean - my daughter has joint damage that showed have showed up, even if they didn't see active inflammation. Erosions, sclerosis and even partial fusion was missed by the local hospital.

So now we try to stick to teaching hospitals/children's hospitals.
12-07-2018, 08:52 AM   #27
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Hi Crohn'sinappa - welcome and sorry you had to find this site, but Im sure like most people on here you will find it a godsend (as I did after Lucy was diagnosed).
Lucy's story is that she to is VEO - she was diagnosed when she was 2 (she is now 10) - the initial year post diagnosis was probably the worst as lots of meds were used before something worked. Lucy's presentation at the time was severe peri-anal disease with some oral involvement. Her bowel issues were relatively minor at that stage. It is difficult to remember but I think the drug sequence was as follows:
- Started initially with Flagyll & Ciproxen
- Moved to Flagyll & Ciproxen with amoxocillan added
- Moved to all of the above and added 6MP
- Moved to all of above and added prednisone.
remission was not induced - I would say after about a year.
- Moved to Remicade & 6 MP
- Moved to Humira & Methotrexate - May 2012 and still on it.
She has had some issues with her mouth since and uses betnesol mouth wash when this happens. She has also tried the benzoate and cinnamen free diet - which didnt really help much although the dentist was a huge advocate for it. The main thing about this diet is that is cuts out processed food, most junk food and spices and to be honest I think by default we as a family largely follow the principles of this diet anyway

Most recently she is just finishing (today) an 8 week course of EEN, which she found difficult initially but it has worked so well, and all are indicators are that she is back in remission - the question now is if we need to change the humira (but that is another story!).

I suppose in relation to diet for us the day to day stuff didn't really have any impact on her at all, our GI would always say that diet doesnt really have an impact and if you were to do something dietwise it would need to be EEN, but having said that I think a sensible approach to diet is warranted, limit processed food, limit junk food etc.

Like many others here, we have been through this journey but all I can say is that it does get better and something will work. If you have any questions let me know.

Crohn's Disease Forum » Parents of Kids with IBD » New here, mom of VEO IBD
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