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Crohn's Disease Forum » Parents of Kids with IBD » Here we go again...?


 
04-23-2013, 06:03 PM   #1
Mehita
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Here we go again...?

DS has been doing great since his resection in January... until now. I don't know if I'm just paranoid or if my unease is truly warranted. I'm open to opinions on the matter

He is on day 14 of a cold/virus and is feeling ok, but I think it might have triggered something inside. His BM's have changed from 1-2 normal ones a day to 3-5 mushy, colorful ones with urgency. During and after he has complained of minor stomach aches, but they are short lived and he says nothing like when he had his stricture. Other things to note is the need to have a BM in the middle of every meal and he started a new probiotic about a week ago. His appetite is normal. Aside from the cold and change in BM's, he says he feels fine.

The post-surgery plan was to remain on Pentasa for now and do 6 month scopes and a MRE this summer. Then start either 6MP or Remicade as a maintenance med.

I'm a little hesitant to do labs right now because of his cold... and because I'm not sure if I'm making something out of nothing. What do you think? And if we take a wait and see approach, how long should I wait?

Last question, if we were to start Remicade sooner rather than later and this is the start of a flare, would the Remi be enough to take care of inflammation or would he likely be put on pred as well? He's just starting to grow again and I'd hate to have to bring pred in again.

So, paranoid or justified?
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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; 04-23-2013 at 06:31 PM.
04-23-2013, 06:24 PM   #2
my little penguin
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hmmmmm......
I would think the cold could have thrown a wrench into the mix. This is how DS presents at the end of a remicade cycle or after stress /cold etc...
IF it is truly a flare- the earlier on the remicade the better for getting it under control without pred.

For ds at least the next infusion reboots his system and symptoms go away without pred , but realize this is after being on maintenance remicade- It would take at least 6 weeks to get past the loading doses.
Was there a reason for waiting till summer?
or was that just a wait until symptoms show up sorta thing then treat
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04-23-2013, 07:06 PM   #3
Mehita
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Waiting until summer was because his GI said he doesn't like to go in too soon and poke around in case things haven't completely healed yet, so he typically waits 6 months before scoping and imaging.
04-24-2013, 02:52 AM   #4
Sascot
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This is a difficult one. I would give it a couple weeks after the cold is gone to see if things settle. Then you could always phone the GI and get his opinion at which point you can then let him make the decisions about whether it's a flare and needing treated sooner. We've not used Remicade so not sure about the Pred. Hope it turns out to be a virus!
04-24-2013, 04:36 AM   #5
crohnsinct
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Justified!

How long has this new BM pattern been around? Is it getting worse daily?

I would agree with MLP, if they are eventually going to use Remicade or 6MP best to get on it as soon as possible and maybe you could avoid the prednisone. Unless they were hoping to get away without having to resort to Remi and 6mp altogether.

Sounds like the cold is mucking up the works, I have heard of that happening for a bunch of kids.

Hopefullt he has caught a little bug along with the miserable cold.

I am a caller. It doesn't hurt anyone and will put your mind at ease if doc says don't worry.
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Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
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Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
04-24-2013, 05:24 AM   #6
Dexky
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I agree with CIC! Can't hurt to get the doc's opinion.

EJ's bowel habits are often up and down. When he's home on weekends, 4-5 times a day isn't uncommon but he rarely goes at school. After 3.5 years of this, as long as there's no blood, we've learned not to worry…as much!

Hope it's nothing Mom!!
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04-24-2013, 08:39 AM   #7
Tesscorm
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Yep, I'm with above... there's no harm in calling and getting GI's opinion. But, having said that, Stephen's had times when he's felt 'off', change in BMs, feeling 'different' in his abdomen, maybe a bit less appetite and/or tiredness, but it's always passed after a few days... Like Dex, I've learned to wait and see for a few days... Between the cold and new probiotics, his system may just be a bit off.
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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
04-24-2013, 11:45 AM   #8
CarolinAlaska
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Nothing new to suggest, but just letting you know, I feel your frustration.
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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.
04-24-2013, 01:45 PM   #9
Mehita
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Normal poop this morning! Lets hope it stays this way. Never in my wildest dreams did I ever think poop would be such a big part of my life.

If I ever forget what day of the week it is, I'll be sure to check in with EJ

Do IBD kids just get hit harder with colds and viruses? It sure seems like it here. His brother had the same cold and he was done and good within 10 days. DS's is still hanging on and he was sick first. And we're not even on immunosuppressants yet!
04-24-2013, 01:52 PM   #10
Tesscorm
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I don't think I've noticed much of a difference since Stephen's been diagnosed... he rarely caught colds before and it's been pretty much the same, both in frequency and duration. Now that we've started remicade, we'll see if things change...
04-24-2013, 04:31 PM   #11
my little penguin
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colds were the same here for DS through 6-mp, mtx, and remicade
only saw a slight increase in strep - but that could have been just a fluke
glad he is doing better
04-25-2013, 03:21 AM   #12
Sascot
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Since going on the 6mp, Andrew does seem to be taking longer to get rid of his colds - the stuffy/yucky nose tends to last for a couple weeks after the actual cold/feeling ill stage is over. I remember reading somewhere that kids that take immunosuppresants are likely to take normal bugs harder and for longer. I suppose it also depends on the individual child too. Yay for normal poop
04-25-2013, 09:34 AM   #13
Mehita
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I just got word from the top of the stairs, "Bristol #4, light brown"! Two days of normal poop. Thank goodness!

I need to stop freaking out at every little thing.

Is it possible for us parents to have the Crohn's version of PTSD?? I just live with this constant anxiety that a flare up is right around the corner. Maybe it's from seeing DS suffer for so long and not ever wanting to have to experience that again. Or maybe I'm just nuts?

Right now I'm leaning towards nuts.
04-25-2013, 10:09 AM   #14
Tesscorm
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OMG, I totally agree with the PTSD!!! It took MONTHS, if not over a year, after Stephen's that any little thing threw me into a panic!!! With me, I think what I felt was that once Stephen was diagnosed with an incurable illness, I lost that 'it can't happen to me' security blanket! All of a sudden, anything was possible because 'it did happen to me' already, so why couldn't something else happen?!?!

But, things have gotten better... either I've gotten used to life without that security blanket or I'm hiding beneath another one - 'it can't happen to me AGAIN! Regardless, I'm no where near as panicky as I was... I still question LOTS and am always on the lookout for 'anything' but I don't immediately assume the worst.

I think the longer your son feels well, and the more times he has a blip but quickly comes out of it, the less panicky you'll be.
04-25-2013, 06:27 PM   #15
Dexky
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Right now I'm leaning towards nuts.
Yeah, but it helps keep us from going insane!!
04-27-2013, 03:58 AM   #16
DustyKat
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PTSD? Welcome to nut bowl where I have been residing for 7 years and there is no sign of me moving out!

Sending loads and loads and loads of luck that all stays settled!

Dusty. xxx
04-29-2013, 07:09 AM   #17
Mehita
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Now entering our fifth day of diarrhea. Well, maybe not diarrhea, but definitely loose stools. I heard DS at 4:00am this morning... not only did it wake him up, but he didn't make it to the toilet. He has no other symptoms, just this, and still says he feels fine. I asked if he has any concerns about the urgency and going to school today or his tennis match tomorrow that is an hour long bus ride and he said no. He says he can control it when he's awake.

Time to call the GI.

I would think that the change in probiotics two weeks ago would have worked itself out by now, right?

Well, it was a nice ride while it lasted.
05-03-2013, 08:05 AM   #18
Mehita
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Do you ever do some labs or tests and just think, "Ok, this is stupid," because you just know what the results will be? I understand that doctors need to rule things out first and have to admit I enjoy the "told you so" moments when I'm right, but sometimes I feel like we're just wasting time while DS progressively gets worse.

... and then it's the weekend.

We've been offered antibiotics, but I'm pretty sure we're not dealing with an infection here. Frustrating.

And it's flippin' snowing AGAIN!
05-03-2013, 08:17 AM   #19
Brian'sMom
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My son doesn't seem to do well on probiotics. Either does his Dad. Seems to add symptoms for us.
05-03-2013, 08:23 AM   #20
Tesscorm
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So sorry he's dealing with this! And, I hear you on the 'waiting' after the tests - especially to just be told what you already knew!!!!

I hope the weekend goes a bit better for him!
05-03-2013, 09:47 AM   #21
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Probiotics can take a month to get things regulated and they can cause gas, bloating and urgency. My GI put me on them and I waited because I was in my sister in laws wedding in the next 2 weeks and my GI told me I might get very bloated and have a funky stomach for a while and I really didn't want to deal with it for the wedding.

As far as being sick an on immune suppressants, Johnny was much worse before he was put on them then after. My guess would be that this cold sticking around has more to do with the resection in January and his body healing up. Once he is on immune suppressants, if he is pretty careful about washing his hands etc you will be amazed at how well he does. There was a nasty cold that everyone in the house got except my son.
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Last edited by Johnnysmom; 05-03-2013 at 05:14 PM.
05-03-2013, 04:37 PM   #22
Sascot
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It's difficult to know what to do when it comes to antibiotics. Maybe it's worth trying if the docs think it will help. I know something like Flagyl is supposed to have anti-inflammatory properties as well, so that might be a good option? I know what you mean about tests - I just used to roll my eyes whenever they used to make Andrew have them - they have never showed anything!
05-06-2013, 12:59 PM   #23
Mehita
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The diarrhea continues. He's exhausted from waking up several times a night.

All the stool tests came back negative. Fecal Cal will still be another couple of days. We are seeing the GI today after school and doing blood work.

Goodbye, remission. Nice meeting you...
05-06-2013, 07:25 PM   #24
Mehita
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I guess DS had some vesicles (?) in his mouth so GI is still thinking it's a virus and rattled off five different kinds it could be. Ever hear of echovirus?? The sores aren't the typical Crohn's ones though. Poor DS donated 9 vials of blood. I guess we're covering all the bases!

We're starting 14 days of Flagyl to see if that clears things up. If not, then we'll scope and see what's going on. If inflammation shows up in labs or scopes we'll be moving on to a very short 2 week pred course along with 6MP. I was a little surprised at that, but GI said he still believes DS only has mild Crohn's and doesn't want to use the biologics just yet. Very interesting appt - our second with this new GI. I like him a lot and DS loves him.

So... here's hoping for a virus!?!?!?
05-06-2013, 10:43 PM   #25
momoftwinboys
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Sorry your son is having a rough time.

I have read coconut macaroon cookies can help with D. There are recipes for gluten free ones if u google it. Do not know if it will work but maybe worth a try.

http://www.crohnsforum.com/showthread.php?t=48693
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"The decision to have a child is to accept that your heart will forever walk about outside of your body" Katherine Hadley
05-07-2013, 08:45 AM   #26
Tesscorm
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Hoping with you that it's just a virus!!

It does seem your GI is looking at all possibilities! Hope all clears with the flagyl!
05-07-2013, 10:38 AM   #27
Mehita
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Whoa! Just got labs back.

Sed rate is 30 (range 0-15)
CRP is 50 (range 0-8)
Also slightly anemic.
Still no fecal cal results but I'm going to wager they're not good.

In the five years DS has had Crohn's his numbers have never been this high. My paranoia is justified.

Last edited by Mehita; 05-07-2013 at 11:07 AM.
05-07-2013, 10:57 AM   #28
DanceMom
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I'm sorry his numbers aren't good. On the bright side, at least his labs reflect what is really going on in there (and labs are simple enough to do). My daughter's labs are always perfect despite having inflammation discovered through biopsy. Guess maybe we will be doing the Prednisone thing together, lol.
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05-07-2013, 10:59 AM   #29
Tesscorm
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So sorry the results weren't better!

Flagyl does have anti-inflammatory properties so, hopefully, the flagyl and pred will quickly get things under control!!
05-07-2013, 11:07 AM   #30
my little penguin
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Huge
Hope your time on pred is short and 6-mp is strong enough
To get things under control
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