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Crohn's Disease Forum » Parents of Kids with IBD » C is having symptoms


 
09-12-2012, 11:46 AM   #1
Clash
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C is having symptoms

So first a little background, C started with mouth ulcers and night fevers/sweats last August. This was followed by complaints that his food was getting stuck in his chest and severe fatigue. It took until Nov. for GP to run bloodwork and see that he was anemic and it wasn't a 3 month virus(yeah 3 visits in 3 months each time dx virus with the ever accurate just say ahhh test)
There was little GI probs except for the trouble swallowing and his tummy pain didn't show up until after the MRI had revealed the thickening in his TI or Colonoscopy showed severe inflammation in TI(can't remember which but they were only a week apart). At the time, I wasn't as obsessed with poo and I think C had come to think everyone had smelly, unformed poo. Anyway dx came after colonoscopy and he started Remi and all went along fine(side note he was on pred 40mg for 6 wks before taper but ct scan showed it wasn't helping with inflammation) through the loading doses. All of his symptoms quickly went away including the pain.

Seven weeks out from last loading dose he had a few off days, didn't feel well joint pain and loose bms. It corrected itself right after infusion but GI wants to move up infusion to every six weeks and up the dose. Also his HBG, which had been rising dropped some in his lab work before infusion.

Last Thursday, we were 3 wks 4 days out from out last dose and he started having mouth ulcers, they have multiplied since then and Monday night he started with the low grade night fevers, fatigue and really bad joint pain(all joints during fevers, knees mainly when no fever) Tuesday he complained of the struggle to swallow like it is getting stuck in his chest. I took him to GP Monday and he said it could be viral but if he had to say is was CD related. Called and left message with GI Nurse today(tried to wait out viral theory but failed when he looked so bad last night) and I am waiting hear back.

So I'm a little worried as the GI symptoms didn't seem to hit C until months after these other symptoms and even at his worst it didn't really show significantly in blood work...CRP ESR etc. I'm afraid this might delay any type of serious concern on the GI's part because he doesn't seem to present with pain, blood in poo(although it did eventually occur still after colonoscopy showed severe inflammation) I mean his main symptoms before is what he is presenting now. Could this truly just be a virus...or am I wishful thinking? Ugghh I hate this disease

Sorry this is so long and rambly, it's the frustration coming out I think!!
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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
09-12-2012, 01:21 PM   #2
Tesscorm
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I'm sorry to hear about he's having symptoms! But, I guess we've all heard that 'virus' story too often... sounds like you're right to check with GI.

C's pre-diagnosis symptoms were very similar to Stephen's but their treatments have not been the same (Stephen has only been on EN to induce remission and as maintenance).

So, since their treatments have differed, not sure if Stephen's experiences would be relevant but, periodically, Stephen does have some 'off' days. During those times, he's had (not all at once) mild fevers, loose BMs or constipation, issues with fissures, paleness, a bit of fatigue, appetite might drop a bit and some back pain. These have all gone away after a few days (only home treatments - Tylenol, sitz baths, prune juice, etc.). Once, when the symptoms seemed to be lasting a bit longer, I did take him to the local clinic, ran tests which showed elevated CRP, ESR and lower HGB. I sent the results to his GI, booked an apptmt and, by the time we went, two weeks later, CRP/ESR were down and HGB was up. So, IDK... were these 'off' days due to Crohns or just a virus! But, better to check!! I hope it's just a virus!!!
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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
09-12-2012, 01:42 PM   #3
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Thanks Tesscorm, I've followed your son's story and think it is great that he was able to maintain on En maintenance and not have to move to meds. I hope the adult GI is exactly what you guys need and are expecting.

C has had those kind of days too, I call them one offs but he's not had these symptoms since before dx. I'm really hoping for something viral too. He was asleep early last night although fitful with the fever and slept til ten he just went back to sleep an hour ago...ughh but nights are the worst.
09-12-2012, 01:55 PM   #4
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But if I did ask for blood work now then viral or inflammation the CRP would be elevated, right? And before dx I associated his symptoms with the fact that he had iron deficiency anemia since that showed up on CBC but maybe it happens with ibd'ers anemia or not?
09-12-2012, 02:13 PM   #5
Tesscorm
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It's so awful that we're always on edge! What's that saying, something about 'once burned, twice shy'??? We went from Feb/March to May '11 hearing that Stephen had a virus, something was going around, etc. (also no blood, no pain) ..., it's hard to not completely disregard the 'virus' explanation whenever they're sick now.

And, yes, I'm certainly glad he's been able to avoid meds thus far, however, I think that's partly because his GI knew he was being transferred soon, so 'stable' was good enough (don't mean he was negligent, just that Stephen's been 'fine' so...) but his MREs do show continued inflammation and his ped GI had suggested that if ever symptoms worsened we'd have to look to metho... but, even with the inflammation, his symptoms never worsened. But, I do worry that the inflammation could be causing problems that just haven't shown up yet. We'll see what his new GI says in October (and, thus will begin my LDN crusade! )

Hope C is just fighting something and you'll start seeing a bit of improvement really soon!
09-12-2012, 02:27 PM   #6
crohnsinct
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maybe a fecal calprotectin or however you spell it would be a better indicator of where the inflammation is coming from than just blood tests...although inflammation doesn't always show in blood but does anyone know in what percentage of the cases might inflammation not show in the stool tests?
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
09-12-2012, 02:47 PM   #7
Tesscorm
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I think you're right... other factors can affect CRP and ESR (and even affect HGB and WBC??). When I took Stephen to the walk-in clinic that time (Dec), he had separated his shoulder in November, so I wasn't sure if the results reflected his shoulder or GI issues. But I looked at the results plus the fatigue, GI symptoms, etc. The fact that, by the time we went to the GI in mid Jan, those tests had improved didn't really prove or disprove anything... BUT if they had continued to be elevated or even higher, the GI had said we'd have to consider metho; as Jan results were improved and he was feeling better, nothing was changed.

But, as Crohnsinct said, I think stool tests are a more direct indication of intestinal inflammation. Does C's GI run the stool tests? Stephen's GI never did.
09-12-2012, 03:21 PM   #8
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Crohnsinct I've already put your advice on stool test in my notebook. I was just wondering about other tests because his GP doesnt do them and his GI is 3 hours away. I'm going to mention it and see if the order can be sent maybe to the hospital? Small, rural local hospital but still they could send it off.

Tesscorm, I'm not sure if C's GI does them or not as he wasn't C's diagnosing GI and only saw C after dx so there was no need for further testing at that time.

He just got up and swished the maalox-carafate mix for the ulcers. He said he was going to work on some school work but he seems pretty irritable so we'll see how it goes!
09-12-2012, 03:55 PM   #9
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Sorry to hear about C's symptoms. I also hope for both your sakes it is a virus. It is frustrating though for docs to just assume it's a virus. My son's bloods have never showed anything - before or after diagnosis. It was only the faecal calprotectin that showed up the inflammation. Not sure about where you are, but our GP can now send away for the faecal calprotectin. It used to be just the GI, but I think it is becoming more commonplace. Hope he feels better soon!
09-12-2012, 04:35 PM   #10
Farmwife
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Yes clach our GP is the one that sent away for the faecal calprotectin test.
Try to ask. My doc didn't even know what it was and he still did it for us.

I hope all gets better soon.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
09-12-2012, 05:28 PM   #11
my little penguin
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Might add a Rheumo to your list.
Since C sounds a lot like DS.
Gi are great at the Gi part of crohns but the EIM's
Joint pain mouth ulcers etc are more Rheumo domain.
Second the fecal test.
Your Gi could order it and fax to you . You just pick up a specimen cup at any lab corp or quest or such and drop off . No need for hospital.
Hugs hope you figure it out soon.
Our Rheumo handles all the extra stuff by phone or else we would always be there.
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09-12-2012, 06:33 PM   #12
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Ok so I have been on the phone with GI nurse, ran and got labwork, and back on the phone with nurse. GI feels it is a flare, C has lost some weight and although his labs were decent last pull they were trending downward in HGB and ticking upward in CRP. They called in a steroid burst,6 day pack, and moved his Remicade up to the soonest they could get him in which is Monday, if there is a cancellation sooner they will contact us.

In all the rush of info, labs and what not I completely forgot to ask about this steroid burst. This doc saw C after 6 weeks of pred at 40 mg and looked at the CT scan and said looks like he is getting all the awful side effects without any benefit start tapering today(The diagnosing GI had placed him on the steroids). So will a burst possible have a different effect?

Sorry to be asking so many questions but thank you all for your advice, I did mention the stool test but the nurse said if there was any doubt on virus or flare they would but the GI was certain.

Oh and drumroll please.....absolutely no stress and low res diet. Now do I send him to school if he doesn't have fever or feels the least bit up to it or is that possibly a stressor? Why isn't there an instruction manual with this blasted disease!!
09-12-2012, 06:35 PM   #13
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MLP, I have been thinking that today since the joint pain was so awful last night and we are going to get the GI to refer C to a Rhuemy at his next appt!! Thanks for the advice, this committee is the best!!!
09-12-2012, 11:08 PM   #14
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So sorry to hear that C is not feeling well. All of his symptoms sound exactly like Ryan's. Add to that a "gray" appearance to his skin and some dark eye circles...And yes, other things like virus, sinus infection do confuse the crp and sed rate blood work.

Darn this blasted disease! It's so hard to be always on the lookout for signs and so sad when we find them!At least we know we aren't crazy being always on the watch. We are all doing the same dance!

I sure hope things get better quickly! You are doing great to try to hit it quickly!
09-13-2012, 07:59 AM   #15
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jmckinley, yep C has the weird grayish skin color and circles although I think his circles are from the fitful fever sleep? Not sure.

C really protested the steroid pack, it seems he got every single one of the bad side effects last time. I've explained to him it being short term he shouldn't get any of those but they left a pretty bad taste in his mouth so he is balking. I told him we could call the GI and see if he could do EN but we have yet to find one he can stomach(texture not taste) no matter what I do to it. We have samples all over our house now and I've taken up supplement drinks as my afternoon snack trying to get rid of them!!

His fever didn't seem to get as high last night but the ulcers are really coming on now and bothering him. He is swishing the maalox cocktail without any prodding at this point.
It only works for a short time whereas the first go around it put the ulcers on the run. Anyone know of other treatments with good outcomes with the ulcers?
09-13-2012, 08:20 AM   #16
Tesscorm
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Sorry, no advice on the ulcers

Poor guy, I hope he comes around re the steroids. Although he is an 'older' kid, he is still a kid and it's so unfair they have to struggle with this stuff!

To induce remission, EN would take longer than a six-day steroid burst but... would he consider the NG tube? If not, have you tried the juice-like (rather than milkshake type) formulas? I've read of them on here... not sure where now but I think they are made by Nestle and are called Breeze. It may have been Twiggy930 's son who tried them???

Also, FYI, we were told the dark circles under eyes can indicate anemia.

Good luck!
09-13-2012, 08:27 AM   #17
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Ahhh the anemia makes sense...because this child is sleeping so much I really couldn't correlate it with lack of sleep so I just figured the sleep was fitful, thanks!

Yeah we've tried the juice and when I was trying to just get him to supplement I turned the drinks into shakes, smoothies etc to no avail. I did mention the ng tube to him and how alot of kids younger than him were using it and inserting it themselves. Sadly, that is what changed his mind on taking the steroids. I think I am going to ask around and see if I can find someone using it and get him to talk with them. Not for this time, as he is such a balker, but if I ease him into the idea then if this happens again I am going to push for EN over steroids. I know it would be a longer stretch but I really really really hate the steroids no matter the length of the dose!!!
09-13-2012, 08:39 AM   #18
Tesscorm
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Since you've tried the 'juice' drinks... how were they? Just drinking shakes would be so much easier on holidays (rather than taking the blender, pump, tubes, bags, etc.) but I'm almost certain Stephen will not like the shakes. However, he really likes all flavours, types, brands of juice so I'm hoping these might be an option.
09-13-2012, 08:56 AM   #19
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Tesscorm, C didn't like the aftertaste. He said it felt like they left flegm in his throat. As far as flavor he didn't seem to mind that, I'm trying to remember the flavor he said tasted fairly good but can't off the top of my head. C is not usually a picky eater so I do wonder if alot of this is psychological for him. His only encounter with the shakes is when his grandfather was really sick and I wonder if that is what he is equating them to? They would be so easy to supplement with if I could just find some he liked. It would make me feel better about his nutritional intake especially when we are having times like these.
09-13-2012, 09:00 AM   #20
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Oh I think the flavor was wild berry or berry from Nestle or I could be remembering a favorite flavor of wine cooler from my college years...hmmm ?!?
09-13-2012, 10:34 AM   #21
Tesscorm
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Hmmm... I've always found that wine, coolers, etc. to be great nutritional supplements! They kept me going through many a day (and night)!

Have you ever tried Carnation Breakfast shakes for C? They aren't EN formulas, however, do have fairly good nutritional values. I think the chocolate shakes taste great When my kids were younger, I would split one shake between the two of them as a drink with breakfast. As the shakes are thicker than regular chocolate milk (and are probably too filling to have in addition to toast, cereal, etc.), I would give each half a shake and dilute it with regular milk. For a long time, they just thought they were lucky to get chocolate milk so often for breakfast!
09-13-2012, 10:49 AM   #22
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Sorry to hear that C is not feeling well. This disease stinks! Just wanted to let you know that my son also had terrible side effects from his first round of prednisone (insomnia, night sweats, moon face, mood swings, I'm sure there are others I have forgotten about) but when he did his second round of prednisone these things were not a problem. The second round of pred he did was for the inflammation in his hip and the dosage was only high for 1 week and then he came down quickly and held at 5 mg for an extended period of time (still holding). My son was also distraught by the idea of all the pred side effects again but with the different dosing schedule it didn't happen. Hope the same happens for C.

I too have a house full of supplement drinks and I have been known to reach for them when I can't decide what to have for lunch...
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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.
09-13-2012, 11:23 AM   #23
crohnsinct
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I too have a house full of supplement drinks and I have been known to reach for them when I can't decide what to have for lunch...
Now which nutritional supplement are we talking about here Twiggy...the kids or ours?

I sooo hope C's experience is the same as Twiggy's son.

I LOVE Carnation Instant Breakfast and as a matter of fact now that I am eating clean I haven't been getting enough dairy sooo I have allowed myself one unclean item a day and that is CIB with milk so I get at least some dairy and calcium. YUUUM! Ovaltine is another good one and for some reason it has more vitamins and minerals...doesn't taste as decadent though..but still good.
09-13-2012, 01:58 PM   #24
Clash
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Twiggy I will definitely pass this along to C because he is not liking the idea of the side effects at all...whew teenage angst on top of chronic illness...yay me!

He used to drink the carnation breakfast as a kid. I've thought about adding it back in I'll have to pick some up and see if we can handle at least some of it each morning.

Okay so we started the steroid today and the pharmacist said since the dose was so high we would probably see the "caffeine like effect" fairly quickly. Oh my goodness, he has talked and fidgeted non stop all day. We were working on school work and he was like a humming bird...constantly in motion and flitting from one thing to the next. Still feeling a little off and more bms today so I finally made him put on a movie and just rest(more for my sanity than his)

My Mom is a hard core Ovaltine believer, says she grew up on them. I think if you've had Nestle Quik you can never fully appreciate the vitaminy(new word) goodness of Ovaltine! LOL all the sugar in the Nestle Quik trumps the vitamins every time!!
09-13-2012, 02:15 PM   #25
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At one point I did try Ovaltine with the kids but... yes, the sugar in CIB won out over vitamins!
09-13-2012, 02:22 PM   #26
crohnsinct
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Okay so we started the steroid today and the pharmacist said since the dose was so high we would probably see the "caffeine like effect" fairly quickly. Oh my goodness, he has talked and fidgeted non stop all day. We were working on school work and he was like a humming bird...constantly in motion and flitting from one thing to the next.
Ah! Maybe I need some Prednisone to get this house cleaned up. That or a visit from Farmwife's mother...or stop drinking the mommy supplements at night so I can stay awake long enough to get something done.....Nah!
09-13-2012, 02:32 PM   #27
Clash
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Definitely don't stop drinking the Mommy Supplements as they make the bubble more invincible, or maybe us...or maybe it's just the amount! LOL
09-13-2012, 03:18 PM   #28
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Yes, I have over a case of boost kids essentials that Ryan won't touch. He got so sick of it this summer. Not pushing it right now as it makes him gassy.

I read somewhere that the gray skin color was related to a biotin deficiency. Ryan takes a biotin supplement now. It helps his dry hands too! The gray skin is when everybody I know starts looking at me like I am not taking care of him

As for the ulcers...I don't know if its the same, but L-lysine helps with fever blisters. And I read somewhere that the acidopholis in yogurt would help mouth ulcers.

Crohnsinct....you could mix your carnation in almond milk then the cheat wouldnt be so bad! That's what Ryan drinks his ovaltine in.

I hope C takes the pred (as much as I hate it too) and gets better soon!
09-13-2012, 04:23 PM   #29
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Sounds like a struggle for you at the moment - gotta love teenagers. My son had the NG tube in place for the whole 8 weeks - wore it to school and played football with it in . Andrew was only 12 at the time so maybe not such a big deal, don't know if a 17 year old would appreciate it!!
Hope the steroid burst does the trick so that it makes the side effects worth while. As for the mouth ulcers, a tsp of salt mixed in a glass of warm water (I use boiled water and let it cool) to swirl round his mouth might help.
09-13-2012, 06:01 PM   #30
my little penguin
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Hugs - DS had the mouth ulcer thing again thus week.
Swishing with Benadryl/ my manta helped some but his went down quickly.
We are big fans of Peptamen here taste horrid but does wonders for crohns.
Hope the pred works
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