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06-26-2014, 06:08 PM   #1
lenny
Senior Member
Fcp 500

My son is 17. He was diagnosed with Crohn's in March of 2013 and has been in remission for about a year. He has been feeling poorly for about a month and sadly, I was just told that his FCP test came back elevated at 500. When I asked the nurse, "What do we do now?" She said, "The doctor is willing to work with you guys...whatever you decide."

I was given 2 choices: Try the elemental diet again and or a short course in steroids.

My son originally achieved remission with a 3 day course of steroids, followed by 6 weeks of only Peptamen. The only medicine he takes is Pentasa, twice per day.

Any advice greatly appreciated!!!
Thank you!!!

Last edited by lenny; 06-27-2014 at 07:58 AM.
06-26-2014, 06:13 PM   #2
my little penguin
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Has he had recent blood work , scopes and imaging to verify the extent of the disease?
Given fecal I would ask for an appt with the GI to cover over the testing options and why or why not they were being done?
Steriods /EN are recuse meds and generally do not maintain remission.
I would also discuss how effective pentasa was ?
Since fcp is a sign of inflammation present.
Typically 5-ASA are not enough to stop disease profession when used as a monotherapy .

Most children need Aza/or 6-mp at a minimum.
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06-26-2014, 06:27 PM   #3
CrohnsKidMom
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Sorry to hear of this setback. When my son was dx'd last yr we were given the same options for first line treatment, but our GI said Pentasa would not be effective for my son as a maintenance med. His CD is mainly in his small intestine, and our GI said Pentasa would only be effective for Colitis, or maybe CD of the large intestine. I hope you get your so back in remission soon and are able to keep him there for the long term. Take care!
06-26-2014, 06:58 PM   #4
Mehita
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We also did the Pentasa route and it didn't do much for my son. He continued to have simmering inflammation and had to move on. Pentasa doesn't usually work for Crohn's kids. I think very few here are on it.

Has the GI discussed other maintenance medications? Has your son been seen since this recent flare up?

I hope he feels better soon.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
06-27-2014, 12:15 AM   #5
AZMOM
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Same question on maintenance med. My personal two cents and from all the folks that are "old timers" on this forum is that Pentasa alone, won't control the disease. I hate that he's been feeling bad!

A short course of steroids while you figure it out might not be a bad idea????

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
06-27-2014, 08:10 AM   #6
lenny
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I fear the strong drugs for my son and the doctor seems to want to hold off for now. My son's blood test just came back "normal" for inflamation. I asked the nurse, "Does that mean these tests are in conflict with each other?" And she said "Good question." I'd like a good answer. My son was actually feeling worse when the fcp test was done 2 weeks ago, than now. He was doing well on the SCD and then we introduced white rice and he soon went down hill. I realize that just may be coincidence..we're thinking about starting the SCD all over again today.
06-27-2014, 08:26 AM   #7
Clash
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My son's labs are never indicative of his active disease level. Fecal calprotectin has always been a great indicator for us.

My son had blood work last week same day as colonoscopy which showed and biopsies confirmed active inflammation yet his blood work was perfectly normal. This is quite common with a lot of the children represented on the forum. Our ped GI sees it among his patients as well.
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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
06-27-2014, 10:57 AM   #8
AZMOM
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Agree with Clash. Lab work is an indication of what is going on systemically. Fecal Cal is only what is going on in GI tract. We've had good labs, terrible fecal cal and seen scope results consistent with the fecal cal.

lenny - we aren't trying to make you worry more!!! Just sharing honest experience so you aren't shocked if your son is in the same situation.



J.
06-27-2014, 11:11 AM   #9
my little penguin
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^^^^ yeah that same here
Normal numbers in blood even when flaring but high fecal cal.
DS Gi is really concerned when his numbers are at the upper end of normal since he knows what is going on in the inside.
06-27-2014, 03:17 PM   #10
Sascot
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Sorry to hear your son is getting worse again. It does sound like the Pentasa isn't working. Stronger meds are scary, but lingering inflammation causes problems. As for labs, my son has always had good results for blood tests, before, during and after diagnosis. His CRP has never been raised. The Calprotectin is the only thing we can use for measuring inflammation. If you reality don't want to, the EN for another six weeks would probably reduce the inflammation for a while.
06-27-2014, 03:18 PM   #11
lenny
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I hated giving my son that news yesterday! I put it off until almost midnight..wanted to wait until after he'd had dinner and all snacks because when he gets upset, he doesn't eat.

We're planning to begin at the beginning with SCD and if that doesn't work, I don't know.
Going without food for a month and a half was hard on him, but steroids are bad, too. Why don't they have a cure already?!

Thank you all for all the support and advice!!!
06-29-2014, 01:35 PM   #12
Patricia56
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After 8 years on boards like this one I have to tell you that I can count on 2 fingers the number of kids I know of who achieved remission lasting longer than 1 year through dietary measures alone. I sincerely hope your son is #3 although using steroids for breakthrough symptoms isn't exactly relying on diet alone.

Pentasa is only helpful in very mild disease, particularly disease that is concentrated in the colon. Do you know where your son's disease was found? How severe it was?

Good medical practice is to treat the whole person not the labs. My son had normal labs and a few bloody stools a day 4 days before he ended up in the hospital with 30+ bloody stools a day. That was a 10 day hospital stay. I don't say this to scare you but to help you understand where I (and many others) am coming from when I am offering you my advice.

This disease is unpredictable. It's great that your son had an apparently long remission from doing EEN. If he's willing to do EEN for this flare perhaps it will respond that well again. And it may not.

Steroids are much more harmful meds than AZA or MTX. Ask your doctor about the systemic effects of steroids. A short burst is OK but if you go more than 2 weeks you need to wean which can take 2 or 3 times longer (or more) than the original treatment period.

There are medication options like AZA and MTX that have been used effectively for decades in the case of AZA and only very, very rarely cause serious side effects. Compared to repeated use of steroids these drugs are, in my opinion, at least as safe. In a large study of patients on Remicade and AZA or Remicade alone the highest rate of fatality was among those on prednisone. These drugs are referred to as steroid-sparing because reducing or eliminating the use of steroids is a prime goal of most GIs.

So I suggest you ask your GI if there are any other medication options besides steroids if your son is unable to do another round of EEN or continues to have symptoms.

All the best
__________________
Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.

Last edited by Patricia56; 06-29-2014 at 06:19 PM.
06-29-2014, 02:12 PM   #13
Momtotwo
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Patrician56- I appreciate your honestly. I recently (and reluctantly) started my son's first med and he will start Remicade soon. I don't like the medications, but I don't like his untreated Crohn's. He has relatively normal labs and looks healthy, but as you mentioned, I don't know what tomorrow will bring without treatment. (Or, really, with treatment.)

lenny- I hope your son handles the EEN well. Is that what you mean by elemental diet? Keep us posted. Is the dr doing anything else such as an MRE to evaluate the disease? It seems like different GIs have different approaches. I hope the upcoming months bring better health for your son.
06-30-2014, 06:13 PM   #14
lenny
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My greatest fear is that you all are right, but that would mean my son's doc is so wrong it it's basically malpractice. He's a bright, well respected GI, but apparently his advice to us is completely wack?
06-30-2014, 07:10 PM   #15
Patricia56
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Where are you located? US or elsewhere? The treatment approaches vary, sometimes a lot, depending on where you live. That could be one explanation.

Or, yes, your doctor could be wrong. This is a complex disease and since your son responded to the initial treatment with EEN so well then he may feel it is reasonable to try that again. And it may be successful again but I would want an MRE and/or scope done to determine the extent of the inflammation before deciding on a treatment plan that fails to include maintenance medication. I mean clearly your son didn't stay in remission for more than a year. To keep them in remission long term is the goal in my opinion. But it doesn't sound like that is his approach in this case.

Or he could be trying to give you what you appear to want - a non-medication approach to treatment. The fact that the nurse told you they would do "whatever you decided" leads me to suspect this is a factor. Our first GI did this and I wish she had laid it on the line with me and explained the typical course of CD in children and why it was important to consider medication like 6-MP early after diagnosis. But she didn't and I eventually learned for myself why using medication for MY son was appropriate and would have been the better course to take.

When I asked you about the severity of your son's illness it was for a reason. Mild disease mostly in the colon is generally not treated as aggressively as inflammation in the small intestine. Usually inflammation in the small intestine is worse than in the large intestine but not always. And you can get it in both. But mild disease in the colon usually gets treated with at least Pentasa as a maintenance medication. Since he's not on that and he responded well to EEN I suspect that he had more severe disease in the small intestine. Here in the US, treatment for that might include EEN to induce remission or more often steroids while 6-MP or MTX were started as maintenance meds.

I suggest you ask your doctor about whether there are other treatment options besides EEN and steroids and see what he says. He may have a very sensible explanation for not recommending a maintenance medication. I don't know. I just know that when you have done that then you may be able to make a more informed decision about your son's care.

You are doing a great job. In case it's not clear to you, we support you in whatever choice you make. What we want for you is a healthy, happy son - however that happens. If EEN is the answer we will celebrate with you and hope that your son will continue to make use of that relatively benign treatment for the rest of his life.

All the best,

Patricia
06-30-2014, 08:18 PM   #16
AZMOM
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Patricia said it so, so well. We want you to have a healthy, happy boy who can hopefully avoid some of what our kids have been through. That is why most (of course, not all) docs want to be aggressive. Your doc may be taking cues from you so asking the questions Patricia suggested is good, in my opinion.

It's also worth asking how many CD patients your son's age are in the practice.

And, a second opinion is never a bad thing if it's within reach. You need to know your options and help your son base decisions on information - not fear and hopefully, if you can make decisions now....you won't be trying to then make them in a crisis.

Have you done any reading other than on the forum? There are lots of good websites. Tons. But what they nearly all have in common is talking about getting into remission and then maintaining remission. CCFA has a lot of good stuff including a newly diagnosed tab on the front.

http://www.ccfa.org/

There's also an option to chat live with one of their folks. Maybe if you find some consistency between other resources, what you are reading here and your doc, you'll find the path that is best for you and your son.

Let us know how he's doing!

J.
06-30-2014, 09:20 PM   #17
my little penguin
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^^^ yeah that - all of that
Our Gi didn't even offer pred at first due to a miscommunication- doc thought we were against it so was trying hard to "work" with us.
We were new and had no idea.
Now the Gi always discusses all the options with us and why each is or is not a good idea - then gets our input before deciding a treatment plan .

We had two second opinons in three years.
Our Gi has been supportive of us getting a second opinion.
07-01-2014, 12:33 PM   #18
Patricia56
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Here's my memory aid for doctor appointments/conversations. Hope you find it helpful:

B - what are the Benefits of the proposed treatment plan
R - what are the Risks
A - what are the Alternatives
N - what if we do Nothing
D - Decide
07-01-2014, 01:36 PM   #19
Jmrogers4
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Haven't been around lately and you have been given some great advice so far. I can add another one to the elevated fcp and normal bloodwork. My son has never been above 13 for ESR normal range is 15 and below generally hovers around 9 when inflammation is present and has always been <.5 on CRP but MRE confirmed inflammation present.
I hope you find what works for your son to provide long lasting remission.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
07-01-2014, 01:39 PM   #20
lenny
Senior Member
The doc knew I wanted to try the SCD as we have another family member with Crohn's whom it has worked perfectly for and who is now in their 9th year of symptomless, drug-free remission. BUT, he also knew I was insecure about trying it and wanted him to step in the moment he thought it was necessary. As the months passed, he was more and more thrilled with our son's progress and recently said that we "have taught him a lot".
He believes in step-up not top down. He's weary of the drugs, regardless of my opinion.

My son's disease was found in both the small and large intestine and was definitely not mild. However, he is feeling better than when he was tested a month ago, his appetite is better. Could it have been temporarily elevated? Do mini-flares exist?

Again, thanks for all the advice!!!
07-01-2014, 02:31 PM   #21
Patricia56
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Yes mini-flares certainly exist in our experience.

As I said before you need to do what you think is best. It's great that you know someone who has had good success with dietary approaches to turn to for personal support and guidance.

Going to AZA or MTX would be a step-up approach. Starting with Remicade would be a step-down or top-down approach.

Only time will tell for sure what's up with your son. Hopefully this was a little blip and he will be fine for a long time to come.
07-01-2014, 02:34 PM   #22
Momtotwo
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Jmrogers4- Did the doctor ever explain why your son's inflammation markers are normal despite inflammation?
07-01-2014, 02:44 PM   #23
kimmidwife
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Hi Lenny,
Welcome to the forum. I am glad you found us though wish you did not have too. I am wondering where you are located? Doctors have different approaches according to where they trained and also where they are currently practicing. Are you seeing someone in Big tertiary care center or a private practitioner in a small town. That can all make a difference.
The newest literature and studies on Crohn's reccomend a more aggressive approach to dealing with the disease. Basically a top down approach as you said. Especially as the disease seems more aggressive in younger people. Unfortunately many doctors continue with what they learned in medical school vs. Following the latest reccomendations. I don't blame them. Having been in the medical profession myself I know that it is very hard to accept new things or change your thinking when you have been practicing a certain way for many years, especially if most of the time that approach worked. However when it doesn't work they need to be wiling to look outside the box.
As some of the others said before making any further treatment decisions a colonoscopy and MRE would be a good idea to really see what is going on inside. That would really be the best way to help you make an informed decision.
That said there are definitly people who have been helped by just using the SCD diet or the enteral nutrition approach. It is more rare but it has happened.
Another thing to look into if you are afraid of the bigger guns is Low Dose Naltrexone (LDN). For us LDN was our miracle. If you go to the first page of the forum and look under the treatment section there is a wealth of information about LDN and all the other treatment options.
Please keep us posted and I hope your son improves quickly.
As to the question of a mini flare, yes these kids can get mini flares but usually the fecal calprotectin test would not have come back that high in a mini flare.
__________________

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.
07-01-2014, 03:01 PM   #24
Jmrogers4
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Jmrogers4- Did the doctor ever explain why your son's inflammation markers are normal despite inflammation?
Not really and we relied on it for many years and although he didn't have "symptoms" he didn't grow or gain weight which as you all know is a big flag but his GI was always waiting for that big growth spurt to happen. Jack would go into the appointment with a big grin talking a million miles a minute and no symptoms so we took at face value that he was in remission and there was always a comment on the growth "if he hasn't grown by next appointment, we need to look at other options" and we did tried methotrexate, LDN, EEN and it was always said that he just needed more time for the medication.

It wasn't until this last flare that we couldn't get under control and went to remicade and he started growing and gaining weight right away that we really went back and looked at all the past lab results and could track when we knew he was in a good place and growing and all his labs, scopes and fcp came back in normal range ESR = 7; fcp = 90; clean scopes as opposed to the times when he was not growing ESR = 9; fcp = 395; MRE showed a lot of inflammation. So now we look if they are above that "normal" for him.
His GI jokes around and calls him an overachiever and says he just has to be different than everyone.
07-01-2014, 04:20 PM   #25
my little penguin
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DS also has had normal labs through his entire dx.
At least for him he has other vague signs and symptoms.
Gi relies on those instead to determine if more testing is needed.

Does your son see a pediatric gi or adult Gi?
Has he ever had a second opinon?
Sometimes fresh eyes are needed .
This does not mean you don't respect your current Gi or that you no longer to see them as a GI - just that a fresh prospective can be useful to confirm your current path or make suggestions on a new one.
You can do a second opinOn in person or by a medical paper review -
They were very helpful for DS.
07-02-2014, 10:58 AM   #26
lenny
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He sees a pediatric gi, (U.S.) has not had a second opinion.
07-02-2014, 11:47 AM   #27
Patricia56
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It's great that you found a doc who is willing to support your treatment choices.

I hope things continue to improve and all goes well. Keep us posted.
07-02-2014, 11:50 AM   #28
lenny
Senior Member
It doesn't feel great. It feels like I'm on my own too much. I've been waiting to talk to him for 2 days now. Just keep talking the nurses, who don't seem to know much of anything.
07-02-2014, 06:27 PM   #29
Patricia56
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I know that feeling. It's one reason we have changed ped GI's 3 times. At this time we travel roughly 100 miles each way to see our doctor at UCSF.

He relies on his NP a lot which is fine with me because she is practically an MD herself and has near instant access to him for his opinion/permission when she feels she needs his approval for treatment decisions. we communicate a lot by e-mail or I leave her phone messages. There is also a ped GI always on call who responds to phone calls within an hour or two.

Most of the time we can get urgent appointments within a week, sometimes same day if they are holding clinic that day. I have never waited 2 days to get a reply to an urgent concern.

Decisions about my son's care are made together after discussion of the pros and cons and alternatives. The final decision is mine but I always feel it is an informed decision, even though it may be a difficult one.

Now part of this is because we have been doing this for 8 years and part is because I spend a fair amount of time educating myself about treatment alternatives and symptoms. The first couple years were very difficult and I often felt like I was flying without a net. That was partly because the ped GI's I was working with were poor communicators or believed that I should just do what I was told or tried to turn themselves into a pretzel to give me what they thought I wanted. None of that worked for us and I didn't give up looking for a doctor that I could work with in a collegial, intelligent manner.

If you don't hear from this guy in a couple more days I would seriously be considering looking for a new ped gi. Preferably in a Ped GI clinic at a major tertiary care center. If you are already doing that then I am sorry to hear they run their program like that.

when you do talk to him I suggest you tell him how you are feeling and that you want more information or guidance. Remember BRAND.

Maybe we should back up a little bit and ask you to describe your son's symptoms in more detail. Is he having bloody stools? Urgency? Night time BMs? Nausea? Episodes of severe gut pain or just constant aching? Joint pain? Vomiting? Tenderness anywhere? Constipation or diarrhea? Mouth sores? Anything else that seems like it might be CD?

Last edited by Patricia56; 07-02-2014 at 11:24 PM.
07-05-2014, 02:54 AM   #30
lenny
Senior Member
My son's symptoms: recent weight loss, low energy, small appetite, occasional mild nausea, pain during bm 10% of the time, occasional constipation, occasional joint pain.

I spoke with the doctor yesterday. He said, "Okay, there are a lot of ways to treat Crohn's okay?...the inflamation, that's going to happen from time to time...I want to talk to __ next weekend and see if he wants to continue with the SCD or maybe he wants to try some meds..." He said 500 was "a little elevated".

I think it's time for a second opinion, but my son is resistant to the idea, as of now.
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