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Crohn's Disease Forum » Parents of Kids with IBD » Blood in urine from 6mp/pneumonia and being immune compromised


 
11-13-2013, 07:27 AM   #1
Johnnysmom
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Blood in urine from 6mp/pneumonia and being immune compromised

Johnny has been having the chills in the evening for a few days. Around 8pm at night he noticed his urine was a very dark brown color. That night around 1:30 am he vomited, his stomach felt much better after that but his fever slowly went up to 103 by the next morning. The GI wanted us to take him into his pediatrician yesterday. She found he had lots of blood in his urine, protein, a touch of bilirubin but few leukocytes. She also said he has pneumonia, lower left lung. She feels the blood is a combination of his body being stressed, his 6mp (can be a side effect), and dehydration. They are testing further for kidney stones, liver issues and kidney infection just to make sure.

His pediatrician called the GI on call and they had him stop his 6mp. I am assuming this is temporary? Has anyone heard of the side effect of blood in the urine and would it be a reason to discontinue the drug altogether? It has worked very well for him and we would like to continue him on it.

Also a little nervous about pneumonia with a compromised immune system. He is on an antibiotic now, and they will call today to check in on him. If he isn't feeling better by Friday he will need to be hospitalized. Anyone had experience with pneumonia while being immune compromised?
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Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
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11-13-2013, 08:32 AM   #2
my little penguin
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My DH has had pneumonia multiple times due to asthma.
This leads to oral steriods plus abx.

I know for DS we have stopped his humira before for a while due to illness
Then restarted it.

We also had a blood in the urine scare but his was a false positive on the dipstick used vs lab analysis.

Hope he turns around quickly
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11-13-2013, 09:12 AM   #3
Lisa
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The only times I've had blood in urine was from kidney stones....never when I was on 6MP.....

HOWEVER - I just did a quick search and came up with this drug info -

http://chemocare.com/chemotherapy/drug-info/6-mp.aspx

I would not be surprised if he has some type of infection going on besides the pneumonia.....and as far as that, yup, I've had that too (avoided hospital though I should have been in there!).....and recovered after antibiotics.

Hope he is feeling better soon!
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
11-13-2013, 09:34 AM   #4
Devynnsmom
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(((hugs)))) I hope Johnny is feeling better soon!! Devynn has had pneumonia, but before diagnosis. My son (not IBD) has had pneumonia a few times, he had chronic asthma as a little one and ended up hospitalized a few times.
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
11-13-2013, 11:49 AM   #5
Jmrogers4
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Hope he feels better quickly and you get more answers.
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Mom to Jack (18) dx Crohn's 2/2010
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Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
11-13-2013, 12:05 PM   #6
DanceMom
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We have been very lucky to avoid pneumonia, but our GI did stop 6-mp for a few days when A was thought to have a virus. He said her body needed a chance to recover and that would be difficult with a suppressed immune system.

Hope Johnny feels better soon and can avoid the hospital!
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
11-13-2013, 12:06 PM   #7
D Bergy
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Mycoplasma pneumonia is what I believe caused my Crohns to fistulize. This is not thought to be a component of Crohns in mainstream medicine. I am quite sure it is.

It needs to be eliminated entirely but I am not certain that is possible with antibiotic treatment. They will reduce it, but that is not good enough. It always comes back.

If they will do it, have them test for Myco pneumonia in the intestinal tract. I am quite sure it is there.

Good luck.

Dan
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11-13-2013, 12:19 PM   #8
D Bergy
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Myco pneumonia is also suspect in many cases of asthma.

Dan
11-13-2013, 10:26 PM   #9
kimmidwife
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Caitlyn had pneumonia while on methotrexate. She recovered with antibiotic treatment. I can't remember if we had to stop it temporarily or not. Sending a hug And hopefully he gets better quick!
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Crohn's Dx'ed Sept 08
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Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
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New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
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11-14-2013, 06:55 AM   #10
Stephyjane
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It sounds like they are keeping a close eye on him and I hope he gets better real soon. Are they going to do an ultrasound to check out his kidneys?
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Medications:
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Past Medications

Lansoprazole 30mg
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Infliximab infusion on hold due to reactions.
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Scopes showed remission, biopsies showed mild inflammation.
Sulfasalazine stopped due to neutropenia
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11-14-2013, 06:58 AM   #11
Stephyjane
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Oh just another thought my daughter is on azathioprine and I know one of the side effects to look out for was abnormal bleeding, nose bleeds, bleeding gums, whether that includes blood in urine I dont know.
11-14-2013, 07:17 PM   #12
Johnnysmom
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They did an abdominal ultra sound. His kidneys look normal but his spleen was enlarged. They did another urine test and no protein this time but still lots of blood.

I am sort of freaking out. Infections, large spleen, bleeding, I am connecting the dots and going into a panic. We go back tomorrow for another urine test and so the dr. can examine him.

No sleep tonight for me!!
11-14-2013, 07:38 PM   #13
my little penguin
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Hugs
I can say when DS had blood in his urine ( false positive )we were told
He would need a spiral ct of his kidneys right away and that an ultrasound was not enough .
There was a whole slew of things they were going to look for .
He has a nephrologist ( kidney doc ) so maybe that was why vs the ped or GI

He was sent straight to the ER
The second test was negative .
So no tests needed

Hope it works out soon
11-14-2013, 09:06 PM   #14
xmdmom
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Sending hugs and hoping this will end up being a minor bump in the road.

Is he feeling any better on the antibiotic?
11-14-2013, 10:44 PM   #15
Mehita
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Turn off the Internet, Johnnysmom. Really. You're already upset and reading all night isn't going to help. You may be wasting a lot of energy and worry over nothing, right? Stay positive! Easy for me to say, I know. Just try and get some sleep, so you can function tomorrow.

Let us know when you hear something... *hugs*.
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- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
11-14-2013, 11:00 PM   #16
Jmrogers4
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Thinking of you guys, hoping for good news tomorrow. ((HUGS))
11-15-2013, 06:36 AM   #17
Farmwife
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We'll be praying for you and a good turn out.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
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dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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11-15-2013, 09:01 AM   #18
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Hoping for good news. Hugs!
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11-16-2013, 08:50 AM   #19
Johnnysmom
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Well, the GI nurse wanted the Pediatrician to check for Leukemia, but Ped did not think it was warranted. Phew!

There continues to be blood in his urine. The ultra sound for the kidneys was normal, so they know he doesn't have any stones causing the bleeding. His spleen was enlarged but other than that, all normal. We repeat in a week to see if the spleen is normal. The Dr thinks that the pneumonia (lower left lobe) caused the spleen to be pushed out and isn't actually enlarged because she can't feel the tip when examining him.

They ordered more labs for kidney function. She has mentioned IgA nephropathy and Glomerulonephritis. She also said the blood and protein in urine could be from being so ill, but that it should have corrected itself by now. I have received the lab results back and everything looks normal except his albumin is slightly low in blood and protein in urine is 3x normal value (34.7, normal is <=12.0). His U CREATINIINE RDM was 66 but no standard range was given so I am not sure if that is normal??

Pediatrician also ordered a CBC and Differential. Everything was good but WBC is now 2.9 and Neutrophil Absolute is 1.03. He has missed his meds (6mp) for 4 days now and they want me to pull them for the week. The Dr.'s have been wonderful and have spent a lot of time talking with me along the way but they seem to be unsure what exactly is happening to him.

We could be looking at Kidney diseases (IgA nephropathy or Glomerulonephritis) or issues caused by illness. Dr. said treatment would likely be more prednisone. I am feeling hopeful that we won't have to go there. Anyone else been through this? Any advice?
11-16-2013, 08:54 AM   #20
Johnnysmom
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Forgot to mention....

He is feeling much better. His appetite is nearly normal and no fever, night sweats are gone, good energy. His urine is no longer red but when tested still has +50 RBC. One urine check had no protein but others did.

He wants to go to a dance tonight but 1 Dr said she wouldn't because of low WBC and other Dr said it was fine. What to do???
11-16-2013, 09:06 AM   #21
my little penguin
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Does he have a nephrologist ?
I would try to get an appt ASAP.
As for ultrasounds and kidneys they can only see really large stones
Ultrasound can not pick up tiny ones.
I will have to look at DS creatine levels . These are checked on him a lot due to his kidney stuff.
I don't remember normal .
DS has had to do a twenty four hour urine specimen
This is more accurate on kidney stuff.

Hugs
11-16-2013, 09:09 AM   #22
Sascot
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Sorry I seem to have missed this thread. Glad to hear he is feeling better now, hope levels start to return to normal. As for the dance - that's a difficult one. I would be inclined to keep him home, but at the same time it is good for them to have some fun. Maybe let him go for a couple hours?
11-16-2013, 09:12 AM   #23
xmdmom
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Glad he's feeling better!

You're right - you can't judge a random urine creatinine. Was the rest of the CBC (Hgb, plt) and serum BUN/Cr normal? Is the doctor thinking the blood in the urine and low WBC might be drug effects?

The dance is a close call. Neutrophil count 500-1000 has moderate risk of infection; count >1000 is lower risk. His count is borderline hence the two differing opinions on the dance.
11-16-2013, 09:18 AM   #24
Johnnysmom
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She said if anything was abnormal in the labs he would see a nephrologist. My guess is she is consulting with one now. So far I think because the only thing that is abnormal is the protein and blood urine (which we already knew about) she will continue to recheck and we will be sent if things don't clear up in a week or so.

She did say the calcium levels and one other level would be elevated with stones, so maybe that is why she is satisfied with ultrasound at the moment? She said it was 'unlikely' he had stones so I think she is perusing this other avenue at the moment.

Thanks for check on creatinine levels.

Does the protein in the urine sample seem very high or just mildly so?

Tot prot urine <=12.0 mg/dl and his number was 34.7

Sascot, my husband is in your camp! We are letting him go to his bball game today (he can't play he has to sit) so I am not sure I want him out again. Still thinking on that one...
11-16-2013, 09:23 AM   #25
Johnnysmom
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Sodium, potassium, chloride, CO2, Anion GAP, BUN, CREATININE LEVEL, B/C RATIO, GLUCOSE LEVEL, CALCIUM, PHOSPHORUS are all in normal range

ALBUMIN LEVEL was 3.5 (3.8-5.6) so that was the only thing off in his Renal profile.
11-16-2013, 09:29 AM   #26
Johnnysmom
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Pediatrician did think the blood in urine was caused by meds, GI strenuously objected.

I read about pseudoleukopenia and thought maybe that caused the WBC drop?

GI nurse seemed shocked it went down so much, it was at 4.9 on Sept 30.
11-16-2013, 09:39 AM   #27
Farmwife
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Sorry he has to go through this.

Grace had a kidney stone. Her calcium levels were high but her ultra sound showed no problems as of yet. She has WBC in her urine but on the low side for about a year.
Also her vit. D was high which can cause something in the kidney, but I forget what. They said it's rare. I'll double check when I get home. Off to town.
11-16-2013, 12:55 PM   #28
Mehita
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Our normal range for creatinine is 0.39-0.73. Not sure if that helps? I have no units to go with it.
11-16-2013, 03:37 PM   #29
xmdmom
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Usually, proteinuria is assessed by a 24 hour urine for protein and creatinine. Dip sticks are not very accurate and I think results may vary depending on urine concentration. Protein can be seen in urine in children sometimes with exercise,stress, cold,fever and/or "orthostasis" (standing up!) and also secondary to blood in the urine. On a spot first morning urine, a urine protein/creatine ration >.2 is considered abnormal. So if you have units, you can divide urine protein by urine creatinine. It will likely be >.2 since the doctor is calling it "proteinuria." See more here http://www.aafp.org/afp/2010/0915/p645.html
11-17-2013, 11:32 AM   #30
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Lucy had only ever had false positive with dipstick but nothing shows up in lab, so I have no experience of this despite her using 6 mp for a yeAr. I really hope you get to the bottom of this. Hugs to you all xxxx
Polly
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