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Crohn's Disease Forum » Parents of Kids with IBD » Children and Inflammation markers


 
03-30-2013, 07:52 PM   #31
Mehita
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Great questions, Clash. DS's CRP hovered in the low 30's for almost a year. The quack GI said not to worry, it's not getting worse and he's seen numbers a lot higher. I was uneducated and scared so I just went with his advice and we did nothing. Because of that, DS now has 10 fewer inches small intestine! We obviously waited too long and I swear I will not make that mistake again.

Personally, I'm of the mindset that if a med isn't working within the timeframe that it should (i.e. 6 mp within 3-6 months) then I'd move on. I also think that even if there are no clinical symptoms, only endoscopic, that they still need to be treated. Just my opinion on that one... it took a long time for DS to look sick on the outside and by then it was too late to get things under control without surgery.

Our GI said DS needed to be scoped at least every 5 years whether he is showing symptoms or not and we go for labs, a good indicator in our case, at least every 6 months.

David... what is the deal with water? We have city water, but filter our drinking water with reverse osmosis. Is that good or bad?
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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

Last edited by Mehita; 06-02-2013 at 10:22 PM.
03-30-2013, 07:57 PM   #32
Amy2
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Can anyone recommend a good book about Crohn's? I don't understand a good portion of this thread.
03-30-2013, 08:01 PM   #33
CarolinAlaska
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Amy2, what don't you understand? I think people would be willing to answer any question you don't understand. Use the "quote" button of the part you don't understand and then ask for it to be explained. I think Crohns books aren't going to teach you nearly what you are going to learn on these forums...
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
03-30-2013, 08:09 PM   #34
David
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David... what is the deal with water? We have city water, but filter our drinking water with reverse osmosis. Is that good or bad?
Reverse osmosis water strips all the minerals out and the water you drink is actually sucking minerals out of you when you drink it rather than providing you minerals like it should. It's quite unhealthy.

I put my water through reverse osmosis but then put it through a remineralizer filter that puts calcium and magnesium in it.

I talk about it in greater depth in this thread and provide citations to back up my assertions.
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03-30-2013, 10:38 PM   #35
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Mehita, where was the location of your son's resection? Has your son improved since surgery? The GI said we have to get even endoscopic inflammation under control and so we are looking at a change in meds and/or even surgery. We have tweaked meds and added meds at each indication of active disease. The hardest part is the lack of symptoms but the GI said lack of symptoms is not the goal so I have to let go of that mentality. I'm trying but Remicade worked so well in the beginning, I guess it is just the fear that the next med may not even do as well as Remicade.
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C age 19
dx March 2012 CD

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Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
03-30-2013, 11:25 PM   #36
Mehita
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Mehita, where was the location of your son's resection? Has your son improved since surgery?.
His resection was approximately 3 feet into his small intestine and he is doing extremely well right now. I am completely amazed with his energy, growth and new love of life. I keep pinching myself because it still seems so surreal after everything he'd been through this past year.

Unfortunatley, I'm kind of in the same boat as you, Clash. He's currently only on Pentasa and supposed to start Remi or 6mp in June after scopes and possibly another MRE are done, but it's hard to consider changing his meds when he's doing so well now. I've done the research though and I know he needs something stronger than Pentasa, especially now that he's already had surgery. We'll just see what his scopes/MRE look like and go from there.

My biggest fear is going through all the standard drug therapies too quickly and running out of options at some point. He's only 13...

Last edited by Mehita; 03-31-2013 at 12:10 AM.
03-31-2013, 07:50 AM   #37
Clash
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I can understand your concern, before the Remicade C was miserable every day, he was in so much joint pain and so fatigued. His tummy pain was cyclical and he would lay in bed and rock. I keep thinking if surgery can get that area at his ICV then Remicade or one of the other biologics could keep the rest at bay but my concern is the same are we burning through meds too fast. The GI says there is no such thing just inflammation that needs to be treated and I need to let go of the idea that a certain drug should be the end all/be all and focus on which treatment brings about remision.

Last edited by Clash; 03-31-2013 at 08:47 AM.
03-31-2013, 08:35 AM   #38
my little penguin
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^^^ yeah that
I still have similar concerns but realize there really is no alternative.
We have to get the inflammation under control to promote deep remission.
Not to say it doesn't scare me since DS is only 9...
And we have tried all the other meds with very little success
But just have to go with today for now
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04-02-2013, 10:52 AM   #39
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Great thread Clash!

I've been trying to keep up with it but haven't had a chance to respond.

Stephen's case is a bit different as the treatment change was due to a new GI. But, I think MLP said above, often the decision really rests on the comfort level and priorities of the patient/parent and GI... I'm not saying that any inflammation is acceptable but some may prefer the risk of 'mild' inflammation to the meds. Again, not saying who's right or wrong...

When we transferred GIs, we went from one who thought the amount of inflammation was controlled and was okay with EN and the next GI, looking at the exact same results, was practically ready to haul Stephen off for remicade that afternoon (although it then took months!!!!!!!). We asked another doctor (BIL's doctor, not a GI specifically, but head of surgery at another hospital) if he had any thoughts as to the discrepancy in treatment. He thought the first GI, being a ped GI, could have inflammation risk a bit further down in priorities and be more conservative re meds' risks and more concerned with nutrition/development (as long as inflammation was under control). And, that, the adult GI might be less concerned with the nutrition/development and more concerned with the inflammation risk, hence his recommendation for immediate top gun treatment. So, perhaps, no right or wrong, just weighing the risk:reward options in the given circumstances (child vs adult).

So frustrating!!!

At Stephen's next apptmt (mid April), I do plan on asking Stephen's GI how/when we will determine remicade's efficacy - will share his answer as to how long he is willing to wait before he sees results.
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-02-2013, 11:35 AM   #40
Amy2
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16 year old son will see the doctor in 6 weeks. What are some good questions to ask?
Or, should I call sooner and ask some because I feel a little in the dark about the game plan.

He was diagnosed with Crohn's a month ago, has gone from 79 lbs to 99 lbs, feels good and they said his inflamation was normal - 12 at his last dr apt 2 weeks ago. His diet consists of 8 Peptamen a day. He's taking Pentasa, Prevacid and supplements.

How will I know if he needs to continue those drugs or take something stronger?

His Crohn's symptoms consisted of no weight gain, then weight loss, moderate stomach aches, low energy and just before going to the hospital, he began to have burning with bms.

Last edited by Amy2; 04-02-2013 at 12:14 PM.
04-02-2013, 12:22 PM   #41
Jmrogers4
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Amy,
We usually have labs done a week or so before appts. so that results are back and we can see if we need to adjust/change anything or what we are doing is working. Has he had his vitamin levels checked? B12, D, Magnesium?
That's great on the weight gain! I'm a big planner so I always ask if XYZ happens what are your thoughts on what we should do.
Jack has an appt next week so I've got my handy dandy notebook out, thinking of questions myself already. What should I expect/hope for in turns of growth (since nothing happened the last 3 years), Do we keep on with the Peptide? How long? How much? Should we decrease amount of drinks and maintain current weight 100lbs? What if he gets taller and doesn't increase weight at same ratio, up the drinks at that point? See - my mind starts spinning, which is why I write them all down so I don't forget them.
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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
04-02-2013, 12:23 PM   #42
Tesscorm
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Some suggestions are:

- Where is his crohns affecting? Large colon, small intestine, etc. (could be multiple locations)
- The 12 you refer to is probably either his CRP or ESR (Sed. Rate). Our lab's normal ranges are CRP 0-5, ESR 1-10 but, different labs may have slightly different normal ranges. Also, countries may use different measurements so numbers may not match up. CRP and ESR are inflammation markers so are an indication of inflammation levels, however, they are not necessarily indicative of intestinal inflammation - could be a sprained ankle, cold, arthritis, anything...
- Often blood results do not match internal inflammation (including CRP and ESR) so what other tests will be done to look for inflammation - colonoscopy, endoscopy, stool tests (calprotection, lactoferrin), MRE, CT scan, SBFT, ultrasound, capsule endoscopy (pillcam), etc. I'm sure the forum Wiki provides info on all these tests or just a search will get you lots of info.
- If your son is feeling good, looks good and results are good, what follow up is the doctor planning - apptmts and tests
- what symptoms should you be watching for and what would warrant a call to the GIs office. How can you treat minor symptoms?
- should you continue with the peptamen? Why or why not? My son has continued with supplemental EN for almost two years now (he's now 18).
- testing for vitamin/mineral levels - vitamin D, magnesium, folate... there are more but I seem to have a mental block at remembering what needs to be tested and why!

I'm sure other's will chime in too with their suggestions
04-02-2013, 01:32 PM   #43
crohnsinct
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In my opinion, you don't stop trying to find the perfect combination of treatment until you reach deep, stable remission. Not clinical remission, not biochemical remission, but deep, stable remission. Anything less and bowel damage can be occurring which is unacceptable.
I am sorry, I am sure this has been discussed somewhere on here before but what exactly is deep, stable remission and how do you determine you have it?

Maybe I am just getting unnecessarily paranoid...who me? My daughter has gained weight (although plateaued as of September), grown in height (also plateaued), bloods return normal and is asymptomatic. No imaging ever of small bowel. Just scopes 2/12. Is that deep solid remission? If so then what is clinical remission or biochemical remission?

Clash..10 pounds and 3/4 of an inch...that is fantastic! I know how hard it was for him to get there. I know I have told you this before and it is hard to go against your doc but at 6 weeks max dose O was a mess the whole week 5 leading to 6. Shortening the schedule to 5 weeks and magic! Of course she did have a course of EEN thrown in there but 5 weeks works so well that when I asked doc if we could start extending out to help with the Remicade induced psoriasis he said, "No way".

Tess: I am curious to know how S's doc is going to evaluate efficacy of Remicade since on the surface and with bloods S looked very good and it wasn't until scopes etc that inflammation showed.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

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
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
04-02-2013, 01:54 PM   #44
Clash
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CIC, deep stable remission is clinical remission(disappearance of clinical or subjective characteristics ie symptoms) histological(remission of the microscopic structure of the tissue) and endoscopic(full muscosal healing) at least that that is how I understand it.

Hope everything is going great with O!!!


Edit to add: I would also throw in growth as well when dealing with kiddos but then that might fall under clinical?
04-02-2013, 01:56 PM   #45
crohnsinct
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So you actually have to go in there and look eh?

Things are pretty good here.
04-02-2013, 02:02 PM   #46
Clash
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I know O hasn't had MRE/MRI and such but she did have a scope and there is a difference of opinion there too among doctors. Some say no reason to test if there are no symptoms and some say(or I have seen here) let's check out where they stand a year in. So I guess it really depends on if the kids is having symptoms and the stance your doc has. I would question the doc about the plateau(but she is involved in strenuous extra curricular activities so it could be just a need to take in more calories to offset all the activity).
04-02-2013, 02:10 PM   #47
crohnsinct
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Yeah, this is what has me head scratching. I went to a conference where he spoke and said emphatically that he scopes a year in to confirm remission and then every three BUT O is at 14 months and no mention of scoping...not that I am particularly interested and excited to have it done mind you but a few little things have me wondering...they are all very easily explained away but when I get paranoid I start thinking scope my kid! I already know the mre/mri is not used in this practice so that is a moot point.

I sent the doc an email asking him to tell O at her next appointment she has to drink a Boost/Ensure a day. Like you said, I just think she isn't getting enough calories.
04-02-2013, 02:20 PM   #48
Clash
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Yeah if it was left up to C, he would just have a scope every so often, he said. He says there is nothing to them but drinking the gatorade/miralax and that isn't a problem for him. Plus he added that it is the best sleep ever! He did not like the MRE due to the med they inject giving him that hot feeling with nausea and you have to lie still for too long in an awkward position.
04-02-2013, 02:36 PM   #49
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Since Stephen's diagnosis in May 2011 (and these are follow up tests AFTER diagnosis), Stephen's had 3 MREs, 2 ultrasounds and 2 scopes! All with no symptoms! And, the ONLY one I asked for/demanded was the last MRE because the GI wanted to go from EN to remicade based on six month old tests! The one time the MRE was really warranted was the one time I had to go to the U.S. and pay for it myself! (I guess they were all 'warranted' but I mean in the situation where the MRE results counted the most!)

There is ABSOLUTELY NO LOGIC in Crohns - no consistency or consensus ANYWHERE - not treatment, testing, symptoms, results, triggers, etc. How can GIs have so many different opinions? I understand different treatments based on different presentations but, how can the testing be so different??? It really is so bizarre!!! And, I think it makes this forum and the sharing of information so much more important!
04-02-2013, 03:01 PM   #50
crohnsinct
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How can GIs have so many different opinions?
And for us what is actually happening is not what I heard him proclaim to a room full of people so that is what really has me confused.

Did you even notice my shout out to you above?
04-02-2013, 03:48 PM   #51
Tesscorm
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It really makes no sense!!! No wonder we're all here trying to find support and information... nothing ever seems concrete and then we're asked to make these important decision!

CIC - yes, the GIs even contradict themselves! Stephen's GI was adamant we couldn't wait the three months to try LDN, it was URGENT to begin remicade or all hell would break lose and then leaves Stephen on NO meds for 4-5 months! WTH??? So, was he lying or is he the GI that just barely scraped by in his exams? I've always said... someone came last in the class! I actually don't think it was either , but I don't have an explanation either.

And, yes... I heard a screech... was that you?
04-02-2013, 03:49 PM   #52
Mehita
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Talk about differing opinions! We are on our third pediatric GI in four years and hoping the third time's a charm.

First GI scoped only and totally missed the simmering stricture in L's small intestine. Decided not to treat him with meds at all. Everything kept getting worse so we got a 2nd opinion at a different clinic.

Simmer, simmer, simmer... GI #2 decides an MRE is warranted. Hello, stricture! Starts meds. One year later things are even worse than worse. Too much simmering has caused scar build up and leaves poor L with a small intestine that is only 3 mm in diameter. GI #2 lays a guilt trip on me for asking about surgery.

We meet GI #3 while in the ER because GI #2 is too busy for us (GI #3 is GI #2's boss). GI #3 wonders why we waited so long to do surgery!

Don't even get me started on their differing interpretations of inflammation markers. I think we'll stick with GI #3 for awhile. He has good poop jokes.
04-02-2013, 04:06 PM   #53
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I can understand your concern, before the Remicade C was miserable every day, he was in so much joint pain and so fatigued. His tummy pain was cyclical and he would lay in bed and rock. I keep thinking if surgery can get that area at his ICV then Remicade or one of the other biologics could keep the rest at bay but my concern is the same are we burning through meds too fast. The GI says there is no such thing just inflammation that needs to be treated and I need to let go of the idea that a certain drug should be the end all/be all and focus on which treatment brings about remision.
My friend's son had a "refractory" case of crohns, no meds were working. He had surgery and had the worst parts removed. He was put back on 6mp (which did not work pre-surgery) and has been in remission for a year and a half.

I think you can "re-visit" meds that previously did not work once very damaged areas are removed. I know remicade is different because of antibodies. So hopefully either new meds will be available shortly or old meds can be re-visited.
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04-02-2013, 06:57 PM   #54
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Late to this thread but I have been told that if blood work and fecal calprotectin look good and there are no concerning symptoms then our GI only scopes every 10 years!!!!
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Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-02-2013, 07:26 PM   #55
rollinstone
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So glad I found this thread, my GI says I'm in biochemical remission, but I still have minor stomach aches, he said it could be related to what I eat, (my diet is pretty healthy, I never eat processed food, the most unhealthy things I eat are "organic" rice puffs and lactose free milk, (recently stopped drinkin almond milk which had carnageen in it-hope that didn't do any damage) anyway my question is, I'm waiting for my fecal cal protein to come back, how accurate do you think that is? I know bloods can be misleading, but FCP is supposed to be far more accurate at measuring intestinal inflamation. I'm just a bit paranoid, I want to KNOW without any doubts that nothing's going on under the surface
04-02-2013, 09:29 PM   #56
Jmrogers4
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Joshuaaa they are supposed to be pretty accurate unless you have activity going on in small intestine then it is possible to get a misleading count. At least that is what my sons GI says. We've had pretty good results with them so far
04-02-2013, 09:44 PM   #57
Clash
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Fecal Calprotectin level is another thing I wonder about in relation to "deep stable remission". I have read on here and other sources that normal is <50 and for IBD'ers less than <100 to <150 but recently read a response from David that got me to thinking.

Someone said they understood that normal is <50 but asked should they expect that to be higher with IBD and David responded that they want it to be normal because elevated would reflect the likelihood of active inflammation.

So if your doc says they expect normal for IBD to be <150 then they are allowing for some simmering level of inflammation even if the goal is "deep, stable remission"...just another contradiction in dealing with this disease!!!! I'm so confused most of the time!!!
04-02-2013, 09:55 PM   #58
rollinstone
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I see, well November last year my level was 450, jan this year it was 120, so I'm hoping this next one will be below 50! Fingers crossed! Man oh man I can't wait for the next few years of medical advances. So sick and sad of hearing everyone's suffering, we need a cure! Btw your kids are very lucky they have such knowledgable and caring parents!
04-02-2013, 10:14 PM   #59
my little penguin
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Trust me clash you are not the only one-
Head swimming in circles on this one .
04-02-2013, 10:34 PM   #60
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Me too... I keep reading and asking and reading and sometimes it really seems there is NO logic and, at the end, everything is just a guess... (makes it very hard for me to have much trust in any decision!). And, then, as discussed above... the people who we look to for guidance, the GIs, contradict one another and themselves! Just leaves me with more and more doubts!

I sometimes wonder if it's just US??? Are we all just the sort of people who need definitive answers? Is that why we're members of this forum? I spent last evening analyzing the images in Clinical Imaging of the Small Intestine and actually trying to see the things they identified in the notations! Is that normal for even an obsessed parent? My friend whose daughter has crohns doesn't do ANY of this research... she loves her daughter and worries just as much but she doesn't seem possessed to know every detail.
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