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


 
03-30-2013, 10:17 AM   #1
Clash
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Children and Inflammation markers

I know that there are a good few kids on here that have normal bloods and still have active CD.

I was thinking about that and wondering for those whose inflammation does show up in labwork-CRP and ESR/SED how long have you stayed with a treatment when blood work continued showing inflammation and how much inflammation was too much and you chose to move on to another treatment.


Ex. If CRP is 42(range 1-3) and with the med you get it down to 26 in 4 or 5 months do you continue with the treatment if symptoms are negligible?

What if your child's active disease doesn't show in CRP or ESR/SED, but further tests show some inflammation and symptoms are negligible what prompts you to change meds?

I know I'm all over the place but my mind is just swirling for the next six weeks.
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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
03-30-2013, 10:31 AM   #2
Amy2
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I only know that they said my son was now in the "normal" range. I think they said 12.
And when I asked when he'd need to be scoped or scanned next, to make sure Crohn's wasn't secretly attacking him, they said they don't generally do that if the child is feeling well, maintaining weight, etc. and that he shouldn't need to be scoped again for 7 years.
Seriously?
03-30-2013, 10:51 AM   #3
David
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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.
Crohn's wasn't secretly attacking him, they said they don't generally do that if the child is feeling well, maintaining weight, etc. and that he shouldn't need to be scoped again for 7 years.
Seriously?
A 7 year scope time frame based upon clinical presentation makes me wonder about their experience with Crohn's disease.
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03-30-2013, 10:55 AM   #4
my little penguin
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WE have been told and I have read numerous times - you do not treat SED/CRP but you do treat symptoms especially when combined with other tests ( including sed/CRP which are high).
So everything normal symptoms and other tests (except sed/crp) then no change.

For DS we have change meds more than once without dramatically increased blood work.

I think with everything IBD it is very individual and doc dependent since what is important for one may be a blip for someone else.

never easy
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03-30-2013, 11:00 AM   #5
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I agree, C is hitting all the marks at the moment, gaining weight, no symptoms, normal bms, full of energy, no pain, no joint issues but we just had the scope and MRE and there is still inflammation, a lot less than at dx and some detectable only by biopsy but inflammation none the less.

He has come a long way and it is evident in the kid I see before me but I can't help but think it is time to change things up if we haven't reached full deep, remission...but then again how long should you give a treatment(diets/meds etc) to get to that point?
03-30-2013, 11:02 AM   #6
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How long has C been on Remicade and what dose/interval?

What is their diet?

Any supplementation?
03-30-2013, 11:05 AM   #7
Amy2
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I recently found out that my oldest daughter has not been scoped once during her 7 year "remission". She told me that doing so can bring on a flare. It's her business, she is 31, but is it true that getting cleaned out can cause one to flare?
03-30-2013, 11:09 AM   #8
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Remicade, highest dose, every 6 weeks + on his 6 month of adding MTX(pill form) 25mg once a week, folic acid, Vitamin D, Mag.

We have been trying to follow a diet with lean meats(grass fed/free range local) farmers market produce(organic) and very little processed. No sodas, not a lot of fruit but smoothies with veg and fruit since juicing was a no go.

He makes it until about 3 days before infusion, then we will have a day of multiple bms with mucus, sometimes his episcleritis will come up that day as well. Next day all is fine then infusion day.
03-30-2013, 11:12 AM   #9
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Edit to add: Also David, C's labs come back good so until MRE/Scope wasn't sure where we stood exactly. FC was a good indicator a couple months ago with the level at 1700(we added MTX then) now FC level is at 300(at time of scope/MRE)
03-30-2013, 11:12 AM   #10
David
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I recently found out that my oldest daughter has not been scoped once during her 7 year "remission". She told me that doing so can bring on a flare. It's her business, she is 31, but is it true that getting cleaned out can cause one to flare?
There are a variety of reasons someone with Crohn's disease should be scoped more than once every 7 years in my opinion. Everything from the detection of subclinical inflammation to screening for colorectal cancer and other intestinal neoplasms which people with Crohn's are at increased risk for.
03-30-2013, 11:14 AM   #11
my little penguin
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Has he had a second opinion ?
I would and have for less.
Our Gi changed treatment since DS had inflammation on biopsies.
During his last scope but all else test wise including mre was normal.

Lack of weight gain growth is a significant sign IMO.
Hugs
03-30-2013, 11:25 AM   #12
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But he is gaining weight, 10 lbs in a month and 3/4 inch. We haven't looked to get a second opinion because his progression through meds have gone similar to others on here. GI is ready for a med change and has offered up several options that he wants us to mull over before next visit.

C was dx in Feb of last year
Was put on Remicade in May 12(on pred while transferring to Ped GI that put him on Remi)
Started having issues in August so shortened Remi
Sept upped dose
Oct added MTX
All went well til end of Jan then viral and/or sinusitis caused that flare.

GI doesn't want to go down to 5 weeks with Remi, would rather go next biologic or remove scar tissue at ICV but small amount of inflammation there too, says C is good candidate since he full colon isn't involved.
03-30-2013, 11:27 AM   #13
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That's a pretty darn good/strong treatment regimen Clash. Possible areas of minor tweaks:

What processed foods does he eat?

Any foods (including the organic ones) with carrageenan as an ingredient?

Is anything in his life giving him doses of aluminum? Antipersperant? Toothpaste? Aluminum bakeware? Cooking with aluminum foil? Heartburn medications like tums? Soy milk? Eats things with lots of baking powder? ANYTHING?

How much magnesium does he take and what form?

What is his vitamin D level?

What is his B12 level?

Are you on a water softener and/or reverse osmosis water system?
03-30-2013, 11:43 AM   #14
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David, his Vitamin D level is still low, it has only come up to 29 now and we just upped the dose to 5000 IU(Biotech D3 Plus) a day, of course it has 225 mg of Magnesium citrate as well as some other cofactors. He was taking also a Mag oxide supplement but he had D with that so we back off to every other day.

The other levels were just tested (folic, zinc, B12) and although I don't have the numbers in front of me I checked them with the levels suggested in the thread here and he wasn't low.

Not sure about carrageenan as an ingredient in all products but anything we buy I check for and I've changed to a homemade paste to avoid carageenen(thanks to one of the threads on here)

I'll have to check out other pots/pans but we do all stirfry in the cast iron for the iron benefit and we don't use any coated ones, the others could be aluminum I just assumed they were stainless steel?

Process foods vary, he goes every 6 weeks for Remi and we let him eat out as an after infusion treat. At home, he goes through phases so he will do really well with very little process foods then he wants tortilla chips and queso cheese for every snack and meal.

I know his diet could improve but it is balancing act impressing upon him how it may affect his illness and not pushing him in the complete opposite direction when he gets out on his own(only 1-2 years away depending on how fast he completes his HS studies)
03-30-2013, 11:55 AM   #15
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I bet you see additional improvement as his vitamin D and magnesium levels improve.

Magnesium oxide is the worst form of magnesium to take. It's very poorly absorbed What dose do you give him of that?

The problem with queso cheese is processed cheese contains very high levels of aluminum. Aluminum is shown to be present in peyer patches and is thought to play a part in Crohn's disease in susceptible individuals. I believe that magnesium deficiency plays a critical role in pathogenesis of Crohn's disease and increased levels of magnesium are shown to reduce aluminum absorption. Increase magnesium, decrease aluminum, and I think the body starts working much better.

I can understand the balancing act. That must be really tough Do you think he'd be willing to try some good quality cheeses melted over his chips rather than the processed stuff? I bet cutting out that queso makes a difference.
03-30-2013, 12:05 PM   #16
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The Magnesium Oxide is 250mg and he was taking it every day now every other day. Besides the Biotech D3 plus I've had a hard time finding Magnesium citrate but admittedly haven't looked in the local health food store, only grocery.

The queso I'm talking about is the block of white cheese you get and melt, queso blanco? But he would be open to trying others, I'm sure.

I'll go online and see if I can find just magnesium citrate and switch it out for the oxide type.

Also if there is a vitamin that gets him to clean his nasty room I'd be open too that to! HA!
03-30-2013, 12:10 PM   #17
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Edit to add: I've been more worried about all the tortilla chips than I have the cheese!! Haha!
03-30-2013, 12:10 PM   #18
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Ah, I thought it was the jar of queso. I don't know about that form of queso, sorry. Processed cheese and parmesan are the worst offenders.

Since he's getting citrate from the D3 biotech I'd add another form if his doctor is ok with it. I've been using this with great success.

What kind of water do you all drink? Does it run through a filter or water softener?
03-30-2013, 12:11 PM   #19
AZMOM
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GOOD discussion. I learn so much from you all.

Amy2 - I just wanted to say that's CRAZY. I would challenge that in a heartbeat with our doc. He says every 3 years when things are going well with imaging in between.

I'm unhappy with him right now for some other issues but he is on target with that one.

J.
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03-30-2013, 12:17 PM   #20
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We have county water now but we don't use it to drink only cook, we buy bottled water to drink, Deerpark by the case and I did forget although C doesn't drink soda in the sense of coke, sprite, mt dew, blah blah blah, now he does drink ginger ale from time to time.

Some of these are new modifications like soda but others are kind of how he has always been. He loves his meats and vegetables and perfers having full meals as opposed to quick and easy.

Edit to add: I'll read through your link.

And thanks for all the info.
03-30-2013, 12:22 PM   #21
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How long have you all been drinking the bottled water? And is the water distilled, reverse osmosis, spring water, mineral water, or?
03-30-2013, 12:34 PM   #22
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We have been drinking for about 3 years now as the only drinking water source but off and on since C was little and played travel baseball.

It is listed as spring water on the company website and from the website it states they employ a multiple barrier system to assure quality that involves carefully controlled filtration and disinfection processes in hygienically designed lines. They aren't extremely forthcoming more an overview than their detailed process, kwim.
03-30-2013, 12:37 PM   #23
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Ah on in the article it says they employ micro filtration and ultraviolet light/ozone disinfection?

http://www.nestle-watersna.com/asset...nts/DP_ENG.pdf
03-30-2013, 12:42 PM   #24
my little penguin
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just saying there are multiple classes of water - bottled water or city water has too many "extra " stuff to be used in highly sensitive industries- only de-ionized water.
that being said- not sure how much the extras are playing an affect. filtering wont take out much.

Ds still drinks bottled spring water which is slightly better than "City/country " water
but not by much.
03-30-2013, 12:45 PM   #25
my little penguin
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http://www.astm.org/Standards/water-...standards.html
03-30-2013, 12:46 PM   #26
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I always thought the goal was to not take too much out of the water since water carried minerals that our body needed. So filtering out all those was actually providing us with less. But I'm a little confused on those. We have county water and I don't mind drinking it but ever since travel ball/bottled water C opts for bottled.

Since he doesn't drink mixed drinks like kool-aid, lemonade, tea then mostly his water source is that bottled water, I don't know if it's good or bad...just what it is.
03-30-2013, 01:08 PM   #27
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Thanks David and MLP for all the information. HA we just rehashed C's whole regimen which I am game for discussing at any time but it kind of side tracked me. But thanks again for all the info.

I just wonder what the standard time frame is with any treatment(beyond the time "to get to theraputic range") if it doesn't get your inflammation levels down in the normal range, 6 months? 12 months? If your child isn't presenting with symptoms but there is still inflammation then do meds get a shorter window of time to prove efficacy, diets a longer window of time?

If inflammation is present are you assured damage is being done?

Last edited by Clash; 03-30-2013 at 02:09 PM.
03-30-2013, 04:57 PM   #28
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I personally like to see all marry up...symptoms and blood work. If they don't then I would pursue why they don't and do what what is necessary until they do.

My two are at opposing ends of the spectrum:

Sarah's bloods were never reflective of where she was at so symptoms were her only sign.

Matt's bloods showed everything and when he was eventually stabilised they would even show what hadn't yet translated into physical symptoms.

Because of my own personal journey I am now never happy to rest until I know that both the physical and the clinical reflect each other. I will add that Sarah's experience has forever made me antsy about the effects of simmering inflammation.

Dusty. xxx
03-30-2013, 05:41 PM   #29
izzi'smom
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Wow, ty David, for chiming in...I just learned a ton, although I will retain none of it lol.

I wanted to comment that it has been a year since Izz has been seen in the GI office (I text/meet her doc regularly as we are friends so we discuss her care regularly). I was thinking it had also been a year since her scope and asked if we should revisit...he said he isn't in any hurry as she is fairly asymptomatic-he won't plan on rescoping her if things continue the way they are going. Monthly labs fairly regular, CRP <3, a bit of anemia (that we manage with diet), and other than stress related, "regular" bms and minimal pain. She had chronic mild inflammation and 3 polyps at her last scope.
I'm not in any hurry either...
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03-30-2013, 07:32 PM   #30
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I recently found out that my oldest daughter has not been scoped once during her 7 year "remission". She told me that doing so can bring on a flare. It's her business, she is 31, but is it true that getting cleaned out can cause one to flare?
Yes, in my daughter's case she had a clear colonoscopy and 9 days later had to be cleaned out again for a video endoscopy and found inflammation throughout both small and large intestines. I think the two cleanouts were a big part of the difference. I don't think that it necessarily was an irreversible flare. She has healed up a lot since then, and she was on no meds when she went through the testing.
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