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Crohn's Disease Forum » Parents of Kids with IBD » Should I be concerned?


 
11-03-2014, 02:02 PM   #1
DanceMom
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Should I be concerned?

A has been complaining of lower right rib pain for about 2 weeks now. First set of labs on 10/20 were perfect. Labs on 10/29 were not. She still has the same pain and I'm not sure if the labs are related, an entirely new set of issues, or just a blip that is no cause for concern. I have an email in to the GI (Rheumo ordered labs but getting him to take notice is an act of God) but I want to know what you all think. Trying not to panic....

RBC 3.97 (4-5.2)
Creatine Kinase 373 (<143)
TCO2 16 (19-30)
AST 35 (12-32)

RBC is only barely low, but has never been low in the past. CK was last checked in January and was 69 at that time. TCO2 was low at last infusion but is typically normal. AST has always been normal when not on MTX or 6mp.

Any ideas?
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11-03-2014, 10:51 PM   #2
kimmidwife
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Maybe one of the drugs is affecting her liver? I wouldn't panic. Can you call the Gi tomorrow and get her in with him ASAP?
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11-04-2014, 05:47 AM   #3
DanceMom
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GI emailed and said to ask the Rheumo. Ugh! She isn't on any medication other than IVIG.
11-04-2014, 09:50 AM   #4
my little penguin
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11-04-2014, 10:37 AM   #5
DanceMom
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Rheumo nurse emailed and said if I don't hear back from doctor by Thursday to let her know. Fortunately A feels okay. She had some blood in her stool last night but I'm choosing to ignore that. I refuse to come out of my happy bubble yet.
11-05-2014, 01:10 PM   #6
DanceMom
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Rheumo called and doesn't feel her Creatine Kinase is anything to worry about. He said #s under 1000 shouldn't cause symptoms. I hope he's right. He said #s in the 300s just means she's an active kid (and she is). He feels her AST is elevated only because CK is, saying they are related. He said an AST of 80+ would be a concern.

So I'll continue floating along in my happy bubble.......
11-07-2014, 07:36 AM   #7
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I wouldn't panic, but stay vigilant. Make sure your doctor continues to monitor these things- signs of liver and kidney injury should never be shrugged off, and IVIG can potentially cause both. You're a great mom and your daughter is lucky to have you!
11-08-2014, 10:54 PM   #8
DanceMom
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Ugh..... very bloody stool this afternoon. This is unreal. She feels great. Ran a 1k (much of which was uphill) in 4:44 this morning. Good time for her considering she's a dancer, not a runner. My plan is to hold off until the next set of labs to see how they read. As long as she's feeling okay another 2 1/2 weeks should be okay, right? If things were critical she'd feel sick, right? Once again I need reassurance not to panic. Lol
11-08-2014, 11:32 PM   #9
my little penguin
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If it's a newer symptom for her I would give an update to the GI
Saying she feels fine but....,,
That way if they are concerned they can decided
That is why you pay them
11-09-2014, 03:50 AM   #10
Cross-stitch gal
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DanceMom, what was she diagnosed with? Is the blood bright red or closer to black? When I'm in a flare, I usually pass a bunch of bright red blood. If it comes with pain, I would make sure to get her checked out sooner, or at least contact her doctor. Is she getting enough iron and liquids? I'd be more concerned about keeping her hydrated and preventing her from being anemic. Just keep a watch on it.

I'm here if you need someone to talk to. Just let me know.
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11-09-2014, 04:45 AM   #11
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I've had similar symptoms, so I thought I'd weigh in... depending on where she's affected (jejunum, colon area, etc.) there can be the issue of pain being felt in other places. (I don't remember the word for it-- I'm sorry, I know it's a simple one, but...)

During a bad flare-up, particularly one where I'm having bloody stool, the pain will be primarily just below my ribcage. But when it gets bad enough, sometimes it'll feel like a kidney has burst. Or I'll feel it in my back. Or uterus. Anywhere, really, because my brain gets overloaded and can't fully process it. It's all coming from the same place, but I feel it everywhere. Just a thought.
11-09-2014, 10:47 AM   #12
DanceMom
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A has an immune deficiency, labeled as Common Variable Immune Deficiency but subject to change if we are able to get more specific answers. Bloody stool has been a symptom of hers for years, but since starting IVIG in August it hasn't been an issue (until now). She assures me she's fine, but her rib pain does concern me. When I barely touched her this morning to wake her she grimaced in pain. GI thought it was costochondritis, Rheumo said to give Tylenol for pain (which we haven't). There are no active immune deficiency boards that I've found, and everyone here is awesome, so I keep coming back for advice and support. Lol
11-09-2014, 12:54 PM   #13
Maya142
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Costochondritis is very painful (According to my daughters and husband), so if A really does have it, I wouldn't be too surprised that she grimaced when you touched her. We use heat (heating pad or hot shower) and ice and Tramadol if it's really bad.

I hope she feels better soon!
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11-09-2014, 02:29 PM   #14
Cross-stitch gal
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A has an immune deficiency, labeled as Common Variable Immune Deficiency but subject to change if we are able to get more specific answers. Bloody stool has been a symptom of hers for years, but since starting IVIG in August it hasn't been an issue (until now). She assures me she's fine, but her rib pain does concern me. When I barely touched her this morning to wake her she grimaced in pain. GI thought it was costochondritis, Rheumo said to give Tylenol for pain (which we haven't). There are no active immune deficiency boards that I've found, and everyone here is awesome, so I keep coming back for advice and support. Lol
I know nothing about this thing she has. But, can sure understand the scare of both the pain and the blood. It can get pretty scary especially seeing so much blood coming from the back end. Glad to have you here even if it's just for support. I try to pop in once in awhile to see if there's anything I can help the parents with from my knowledge of experience. But, you guys know where to find me too...
11-09-2014, 09:11 PM   #15
DanceMom
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Whatever is causing the rib pain.....is now worse. She went from running and dancing to crying and barely being able to move. Tylenol and ice packs weren't much comfort (she hates heat). Hubby freaked when he saw the stool pic, and he doesn't get riled easily. Says I need to email the pic to the GI tomorrow. Is it possible that the rib pain is a small intestines issue?
11-09-2014, 10:11 PM   #16
my little penguin
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It depends on where the rib pain is ?

For Ds it was the breastbone
Hope you get answers soon
11-09-2014, 10:15 PM   #17
Maya142
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We've had both breastbone pain and pain on the sides. The pain on the sides has been much worse for my girls.

Rib pain has been really bad for them in the past, crying and refusing to do stuff is common until we get it under control. M is usually given steroids when it gets that bad, not sure if that's an option for A?
11-09-2014, 10:17 PM   #18
Farmwife
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My dd was one sided rib pain.Its not returned............. yet.
I pray A is better soon.


BTW, even is their was another on-line support group, we would still suck you back into this one. lol
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11-09-2014, 10:23 PM   #19
DanceMom
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The pain seems to be the lower tip of her right rib. I'm not sure if it is the actual rib or perhaps underneath. Does costochondritis suddenly get much worse, for no apparent reason? I'm hoping she wakes up tomorrow feeling much better. Like maybe this is just a bad dream. She's been doing so well....
11-09-2014, 10:26 PM   #20
Maya142
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It could get worse suddenly - we've had mild rib pain that's suddenly become bad enough that's it hard for M to take a deep breath.

I hope she starts feeling better soon.
11-10-2014, 05:09 AM   #21
Cross-stitch gal
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Is the bloody stool with dripping blood and diarrhea? If so, I've had that too. The main concern is the pain. If the pain hasn't gotten better, I'd say the ER would be the best place to go. In the echo of Maya, "I hope she starts feeling better soon."
11-10-2014, 05:51 AM   #22
DanceMom
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The stool is soft, mostly formed. No dripping blood and no blood when she wipes.
11-10-2014, 06:05 AM   #23
Cross-stitch gal
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Ok. I admit that it's still scary to see. But, no diarrhea and no dripping blood along with no blood when she wipes is a good thing. The main thing is to get that pain down, keep her hydrated and make sure she's not anemic. A call to the clinic would also be a good thing. Sending lots of hugs your way.
11-10-2014, 06:55 AM   #24
Catherine
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Didn't A have a cold? Any chance she has pleurisy?

http://www.betterhealth.vic.gov.au/b...risy_explained
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11-10-2014, 08:55 PM   #25
DanceMom
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GI wrote back, asked if she was constipated. Ummmm.......no. Said to get with Rheumo about rib pain. I already did and he said to give Tylenol, which we are doing. So this just sucks.
11-11-2014, 02:41 PM   #26
DanceMom
Senior Member
GI wants IVIG pushed up or dose increased. Rheumo thinks numbers look okay and that the pain is unrelated to CVID. I don't know what to think. Next infusion is in 2 weeks so I guess we'll just deal quietly until then. Frustrated for my baby.
11-12-2014, 11:46 AM   #27
Mehita
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I know IBD has pretty much been ruled out, but... what other diseases/issues can cause blood wih stools and stomach pain like that?

I'm so frustrated for you.
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11-12-2014, 12:10 PM   #28
DanceMom
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Immune deficiencies can cause a Crohn's-like syndrome....basically all the symptoms of Crohn's without the chronic changes. I think that's what is going on here. GI wants to treat by adjusting IVIG dose/schedule. Rheumo wants to leave things alone. The blood has stopped but the rib pain continues. We're giving Tylenol 3x/day and she wears an ice pack throughout the day as well.

Now my little one is showing signs of an immune deficiency (cough, sinus infections, etc.) and the Pedi doesn't want to test her. I'm losing my mind over here!
11-12-2014, 12:13 PM   #29
my little penguin
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Can you get the LO an appt with the Rheumo?
I know for my two the ped like horses and have a hard time seeing zebras .

Good luck
11-12-2014, 12:13 PM   #30
Maya142
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DanceMom - for the rib pain sometimes Voltaren gel or Lidoderm (Lidocaine) patches help. Even a pediatrician could prescribe either. We were told Voltaren gel is better than taking an NSAID since less is absorbed.

I hope A starts feeling better SOON and next infusion works like magic!
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