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


 
05-07-2013, 11:29 AM   #31
Twiggy930
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Sorry to hear the blood work came back high. Hope the 6MP works quickly. Our docs also favor doing the azathioprine/6MP before jumping to the biologics. I see advantages and disadvantages to both routes.

BTW I too am waiting on fecal calprotectin results and all this waiting is making me CRAZY.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
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.
05-07-2013, 09:09 PM   #32
Mehita
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Goodness, we are just having a miserable day! GI never called today even though the labs are in. The Flagyl doesn't seem to be doing anything... maybe even making him feel worse?

DS has spent most of the day in the bathroom. Alternates between diarrhea and stomach aches. He's gone 7 times in the last 12 hours. Every time he even nibbles on something it sends him directly to the bathroom again, yet he says he's hungry. He's trying to stay hydrated but even that is upsetting his stomach.

Just now he told me his eyes hurt and are watery. Is that normal?? He said he thinks it's from too much screen time since he's been reading a book on his iPad all day, but I don't know?

He also asked for a Zofran and Ralph (our vomit bucket).

He's getting pretty frustrated and cried for awhile. I just cried with him. I don't know what to do. Overall, he is worse than yesterday, but stable. I don't know if calling the on call GI will solve anything since they tend to usually say "I'm not familiar with his case, but come to the ER if you need to".

Any suggestions?
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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
05-07-2013, 09:31 PM   #33
Mehita
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And we can add a 102 fever to the mix
05-08-2013, 05:20 AM   #34
Dexky
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Does your hospital have an online messaging system? Can you e-mail him? I hate to read about him this sick and you with no contact!
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Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
05-08-2013, 06:17 AM   #35
Jane and Nick
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It must be so very stressful! I am sorry you are both having to go through this horrible time. I hope tomorrow brings a better day. Sending love and positive thoughts.
05-08-2013, 08:14 AM   #36
Tesscorm
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I'm so sorry, Mehita, that he's going through such a tough time.

How is he this morning, any improvement at all?

If the eye pain doesn't improve, it could be related to inflammation. There is some eye inflammation associated with crohns, I believe it's called uvietis (not sure of name or spelling ??). You can probably find some info under the EIMs subforum.

Hope last night and today are better!
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Tess, mom to S, 22
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
05-08-2013, 08:20 AM   #37
Brian'sMom
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What's he basing his theory of it being mild on? Scopes?
I hope things get better soon.
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
05-08-2013, 01:51 PM   #38
Mehita
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GI's (we're on our third!) have always said mild Crohn's because the only area that has ever showed disease was at his stricture, which has since been removed. All previous MRI's and scopes have always been clean everywhere except that one affected segment. But to me, if this is truly a flare, to have symptoms just two months after being "clean" with the highest inflammatory markers he's ever had is not mild. I'm not accepting mild anymore. I might even punch the next person who tells me it's mild. I think "mild" is why I'm having trouble getting GI's take me seriously when I say Pentasa isn't working and they're slow to try other meds.

Scopes are scheduled for Friday morning. Part of me thinks, "Yeah! Finally!" and then I think, "Two more days of this?"

Last night with that fever and erratic breathing, I had every intention of taking him to the ER... and then I fell asleep!! I didn't mean to fall asleep and I recall dreaming of taking him to the ER, but in reality, I never did. I woke up so confused this morning! Thankfully, he slept through the night as well.

His GI said to stop the Flagyl. He thinks it's contributing to the diarrhea and causing the nausea since things got worse after starting it. It's been 7 hours since his last dose and he's sitting up doing homework and had only two bathroom trips (still D tho). He even ate a little bit. Overall, better than yesterday, but that's not saying much.

GI is still thinking this might be viral, particularly if he perks up in the next day. Can a virus cause high CRP and SED? If this is "just" a virus, it's really doing a number. My gut is telling me it's not viral. Unfortunately, we haven't known this new GI long enough for him to figure out that Mom is always right. I'm only half kidding
05-08-2013, 02:13 PM   #39
crohnsinct
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Oh Mehita! So sorry to read all this.

I think a virus can elevate sed and CRP. Any inflammation in the body can raise those. Did you get his fecal cal numbers back yet? Those are usually more reliable for intestinal inflammation.

Weird question and maybe not even a good one given Flagyl didn't work but did they test him for c diff? Since he was recently in the hospital and given his symptoms I would think they did but just putting it out there. Sorry if you mentioned it already but I am not on home computer and having trouble navigating the forum.

It sounds like to me momma is right! But holding out hope for virus or bacteria.
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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
05-08-2013, 04:04 PM   #40
Mehita
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No fecal cal numbers yet. Two c diff tests. One last Friday and one last Monday. Both negative.
05-08-2013, 04:14 PM   #41
crohnsinct
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Sorry was hoping.
05-08-2013, 04:38 PM   #42
Brian'sMom
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I'm sure they'll do biopsies at scope, but make sure they do. Our GI immediately after scope said, crohn's is still only affecting his sigmoid colon and rectum...and the transverse isn't involved anymore and its NO where else! We were sooo happy ONLY to be told 2 weeks later that the biopsies told another story. Inflammation in every biopsy she took!!! Only his esophagus is unaffected. She was surprised herself.
05-08-2013, 05:03 PM   #43
Mehita
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Thanks for the tip, Brian'sMom. I will definitely ask for biopsies.
05-08-2013, 05:05 PM   #44
Brian'sMom
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I always request pictures too! I'm getting to be more and more a skeptic. I'm like, I want to see what you see!!
Good luck Friday. I'll be praying for you and your son. It could very well be a virus. Fingers crossed. At least you'll know soon
05-08-2013, 05:41 PM   #45
my little penguin
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Hugs
Second the biopsy
DS looks clean but biopsies tell a different story
We were told that DS was "mild"
While on 6-mp despite still having on going inflammation.
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DS - -Crohn's -Stelara -mtx-IVIG
05-09-2013, 05:44 AM   #46
Dexky
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I'm glad they're scoping Mehita. I hope his cleanout and procedure goes smoothly. Good luck!! I know you'll let us know.
05-09-2013, 04:59 PM   #47
Mehita
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Oh my... can a fecal cal of 1332 be right???

Normal is less than 50, 51-120 elevated, 121+ high.
05-09-2013, 05:55 PM   #48
my little penguin
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Yep
That high at least we were told would indicate a flare.
They expect elevated in Ibd kids.
Some gi's like to keep fecal cal below 300.
Our Gi explained a flare is typically in the thousands
So 1300 sounds about right
05-09-2013, 11:22 PM   #49
Twiggy930
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Yep, we've been told that during a flare FC numbers can be in the thousands. What is the plan now? Is he still feeling a bit better?

Still waiting on the FC results around here.
05-10-2013, 02:28 AM   #50
upsetmom
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Good luck with the scopes...
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Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014



05-10-2013, 03:42 AM   #51
Maree.
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Good luck with scopes, hope you get some answers.
05-10-2013, 06:54 AM   #52
crohnsinct
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Unfortunately, yes. Inflammation! Time for you to start singing your I told you so song...also time for our dear friend stabbie

Are the FC numbers alone enough for the GI to act on and maybe avoid scope? Probably a moot point now that he has done the cleanout...they will make you go through with it.

Good luck!
05-10-2013, 08:11 AM   #53
Tesscorm
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Sorry that the FC numbers are confirming the inflammation! But, hopefully, acting on it quickly will bring quick results!!!!
05-10-2013, 11:12 AM   #54
Mehita
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Hey, guess what?? DS has Crohn's disease and is currently flaring. Doh! Score one for Mom.

Here's a summary... if anything stands out as a red flag, please let me know!

Biopsies and pictures were taken. Biopsies back in a week. Endoscopy showed "no gross lesions in the esophagus, stomach or duodenum." Yeah!

Patchy inflammation in the colon and terminal ileum with a few ulcers, erosions, erythema, granularity and mucus. Still "mild". Yes, he used that word, but no, I didn't punch him. Thought about it though! Slight concern that this flare seemed to come on so quickly.

Starting 40mg pred today for 7-10 days, then stopping cold turkey (?) if he's doing great. If not, we'll do pred another week and then taper. Starting Azathioprine tomorrow alternating between 25 mg and 50 mg every other day with bi-weekly labs until further notice since DS doesn't have the greatest TPMT score (15). GI wanted to do 6MP, but because of the low dosing and DS's weight, I'd be cutting a tiny pill into thirds. We could do the liquid 6MP, but he said it's not as effective. So that's how we ended up settling on Aza.

Though he couldn't see it, he believes the small intestine is likely inflamed as well. He even wanted to try and get an MRE done today, but decided the scopes gave him enough evidence to start treatment today no matter what, so no MRE until late this summer or if Aza doesn't work. Also, decided DS has stricturing disease that can be controlled if we can keep the inflammation in check.

I think that pretty much sums it up. Any red flags? Any questions I should follow up on?

Last edited by Mehita; 05-10-2013 at 03:42 PM.
05-10-2013, 11:33 AM   #55
Tesscorm
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I'm sorry that all the tests have confirmed a flare but, at least, you can get on top of it right away and he can feel better quickly.

Sounds like you've covered everything! I can't really think of much else I would ask... I imagine GI will be looking to see if symptoms disappear and how labs look to determine if Aza is working but, since you have a current FC, I would ask when would be a reasonable time to expect results from the Aza and could another FC be scheduled to confirm it is working (maybe mid way between now and when MRE will be done??)

How did they decide he has 'stricturing disease'? Were there signs of stricturing now?

Hope he's soon feeling better!
05-10-2013, 11:46 AM   #56
Mehita
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I will ask about a follow up Fecal Cal. Good idea, thanks, Tess.

He didn't see stricturing today, but used the phrase several times. After the third time, it caught my attention. I think he's basing it on DS's history with the resection. That was when and how we met him, so DS is "the kid with the stricturing". Silly, I know. I will ask again to clarify.
05-10-2013, 12:09 PM   #57
ChampsMom
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Glad you got some information (clarification) - sorry you were right (not surprised - Mom's rock!) Hope everything starts to settle down.

I have never heard of stopping prednisone without tapering - that one was new to me... Would seem drastic.

Praying for you all!!
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Shell

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Prayer
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05-10-2013, 01:24 PM   #58
Tesscorm
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Stephen's never used pred so not from personal experience... but I have read here that very short courses of steroids can be stopped without tapering.
05-10-2013, 01:30 PM   #59
DanceMom
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My youngest daughter has had Prednisone for 3-7 day periods (for croup) many times with no taper. She didn't have any withdrawal symptoms, even doing it once a month (stupid croup).
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
05-10-2013, 03:30 PM   #60
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Sorry to hear about the confirmed diagnosis - don't know why doctors don't listen to us mom's more! Good luck with the meds, hope they work quickly. Not dealt with Pred (we did the 8 weeks EN) so no advice there, sorry.
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