Blood in urine from 6mp/pneumonia and being immune compromised

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Johnnysmom

Johnnysmom

Joined
Oct 26, 2011
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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. :eek: 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?
 
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
 
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!
 
(((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.
 
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!
 
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
 
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!
 
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?
 
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.
 
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!!
 
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
 
Sending hugs and hoping this will end up being a minor bump in the road.

Is he feeling any better on the antibiotic?
 
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*.
 
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:eek2:. 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?
 
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???
 
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
 
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?
 
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.
 
MLP,

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...
 
xmdmom,

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.
 
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.
 
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.
 
Our normal range for creatinine is 0.39-0.73. Not sure if that helps? I have no units to go with it.
 
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
 
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
 
He is feeling good, not sure if there is still blood in the urine. It looks better but on Friday it looked better and the lab test showed it was still +50.

They let him go to school today, but still no meds. He will have to get another CBC to make sure his WBC is up before they let him take them again. Do you know if it is no big deal right now that he is not taking meds because his WBC is so low anyways? He had a bit of tummy pain and loose stool saturday so I started the Probiotics. C-diff would be a nightmare right now so hopefully it was just from the z pak.

They are suppose to call today about the results that came in Friday for his kidney profile. They look good to me (what do I know??) so hopefully just another urine test to make sure things are heading in the right direction.

I will keep you all updated, thanks for the support. My friends are sort of sick of hearing about it. It is nice to have a place to go to just to vent. Love you all!!!!
 
I know it took a little over a week when DS was taken off 6-mp (without other meds ) due to liver stuff to start to go down hill

Good luck
 
Johnny is still off 6mp.
His WBC went up to 5.2 and neutrophil is up to 2.3.
GI wants to see him in clinic tomorrow before he okays him back on meds.
Nurse said that he wasn't happy with all of the weird things going on with him and needed to get his hands on him before he could make any decisions.

Has anyone ever been to 'clinic' before? How is it different from a regular appointment?

Hoping all goes well tomorrow so Johnny can get back on his meds. :)
 
"Clinic" is the same as a regular appt. some nurses/doc sometimes refer to appts as a clinic visit.
especially if it s "push in" where the doc stated patent X needs to be seen within 24-48 hours etc....
 
What is Johnnys normal wbc count? My ds's is around 8.4 on Cimzia and Mtx. Have they given you a # they want his wbc to be at? I hope you get things figured out soon. Is he still feeling ok? Our GI calls 'clinic' when you see several people in the gi office.
 
Ditto, MLP. I think it's great that they are making him a priority and want to see him. Just think of it as peace of mind and come with all your questions. Quite honestly, I'm wondering what caused his WBC to get so low? Was it the 6MP and it needs adjusting? KWIM? Maybe it's working too well?
 
His WBC before he got pneumonia was 4.9. It is usually in the 5 range when all is going smoothly.

Our pediatrician said that there are some illnesses that target the bone marrow and the WBC will go down. She seemed to think it was somewhat unusual but not unheard of. I also read about pseudoleukopenia-it can develop upon the onset of infection. The leukocytes (predominately neutrophils, responding to injury first) start migrating towards the site of infection and can be scanned at the site of infection. Their migration causes bone marrow to produce more WBCs to combat infection, but as the blood sample is taken upon the onset of infection, it contains low amount of WBC's.

I think the GI wants to see him because of the blood in his urine. Probably the low WBC too, he just thinks it's all odd.

I think we do see more than one Dr. at clinic. I got the feeling they have some sort of brain storming session about what could be going on. My friend who has been their for cardiology said it's like a 'cattle call', I am not sure what that means???

But, I will let you all know. Always interesting :) Thanks for your support!
 
You were right MLP, just a regular appointment.:)

The Dr. wanted to see if he could feel Johnny's spleen and see how he was doing physically.
Johnny had a urine culture on Thursday. The protein is gone from his urine and the red blood cells were 5-9 instead of +50 like they were for the previous 3. So headed in the right direction. The GI doesn't think the 6mp caused the bleeding. The Pediatrician thinks it's IGA nephropathy, he seemed less convinced. He will have another urinalysis next week and they will continue weekly until there is no blood. If they don't clear we will go to a nephrologist. He did a CBC, differential, and EBV test. He also started Johnny back on 6mp. He didn't think the two weeks off would affect him much at all. He said going off of it was definitely the right call.

I asked why he was doing the EBV (Epstein Barr or Mono test). He said Lymphoma, that a very high percentage of people who get lymphoma have had mono. He said its unusual to get lymphoma with out having mono or EBV. He wants to be able to check that off the list of possible causes for the enlarged spleen, bleeding, pneumonia, fever, and very low WBC. I had no idea that mono was so connected to Lymphoma. I hope someone, somewhere is working on a vaccine.

Johnny is home and feeling almost normal. He is still a bit tired but is eating well again.

Thanks for hanging in there with me.:ghug:
 
DS was screened for EBV last year while on remicade .
It was negative
I know the results came back quickly

Hope things continue to improve and it just a one if sorta thing
 
I got the results back around 10pm last night. It was negative. I was sort of surprised. I read somewhere that up to 50% of kids will test positive by age 7. Maybe that statistic wasn't accurate??
 
Well, it seems I was mistaken. I got the results back from a EBV PCR QUANT which were negative. But today two other test results came back, EB Virus IGG and EB Virus IGM. Both of those results aren't listed so only the Dr. has them.

So, I am not sure of the status on the EBV. I read about the IGG and the IGM and I think I basically understand them but I don't know how they differ from the EBV PCR QUANT. Anyone know?
 
He is feeling normal. He had an ear infection on Thanksgiving but just finished the antibiotic and is feeling better.

They did the follow up urine and blood tests yesterday. The blood in his urine has gone up a bit since November 21. It was 5-9 and now is 10-14. I am not sure if they will consider this a significant difference or not. I know they were hoping the blood would be gone by now, and certainly not worse. I am sure the pediatrician will call on Monday.

His CBC, GGT, Hep Profile, and Differential were all pretty normal. The only thing that was low were his lymph absolute. His SED rate was also a bit over normal. Reference range is 0-10 and he was an 11. He is usually an 8. Not sure if this was from ear infection or not.

Any ideas??
 
Yeah that couldn't hurt ....
That was where they were sending DS when he had a false positive for blood in the urine .
Better to get a handle on things while they are minor kwim
 
No, the GI and Pediatrician wanted to test his urine a few more times. They said if the blood didn't clear up they would refer us. My guess is we will be referred at this point. I was reading that the antibiotic he was just on for his ear infection can cause blood in the urine. (Omnicef) Could the increase just be from the infection and antibiotics? He just finished them the day before he took the urine test. No protein or WBC in urine, everything else was normal.
 
The ear infection can't cause blood in the urine. It is possible that an antibiotic could cause blood in the urine but this could be through a toxic effect on the kidney and hence, I'd still want a nephrologist's opinion.
 
Do you have to have a referral for your insurance or can you self refer?
If you can self refer- it doesn't hurt and can only help at this point.
 
Wow, what a side effect of the antibiotic! Hope that explains it. Yes, the SED rate can go up with the ear infection (with any infection).
 
We have been referred to a Nephrologist. Children's hospital is suppose to call within 48 hours of the order being put in.

The pediatrician called me on Monday and didn't seem all that concerned. She didn't have the urine results, for some reason they weren't sent to her but when I told her she just said they would keep and eye on it. There was no protein in the urine and she said they were more concerned about that than the blood. I knew the GI would be all over that. He called the pediatrician himself and said that he wanted Johnny seen by nephrology asap. So Johnny's GI nurse called me back and said that he would be referred and they wanted it checked out as soon as possible. They want another CBC in 2 weeks.

So hopefully we can get in quickly with a Nephrologist. I am still hoping that this will clear up and go away and just be a fluke. So I am living in my bubble until I am forced to leave!

He seems to feel well, appetite is very good. He still has a cough but it is getting better. Ear infection is gone. His back hurts but I think that's from his 50 lb back pack.:eek:
 
DS used a wheeled back pack - this eliminates my joints/back etc are hurting from.... a backpack.

Good luck at the Nephro
for Ds we had to do a 24 hour urine collection /ultrasound as well as blood work.
Plus be prepared for a urine sample fresh at the visit.

hope they get to the bottom of it.
 
We have an appointment this Saturday, Dec. 28 with a nephrologist at Children's Hospital. I will let you all know how it goes!!

Johnny is doing well but is still coughing :(

He is getting a DEXA scan on Dec. 26, would there be any reason he shouldn't get this before we get the kidney stuff checked out?
 
Last edited:
Just a quick update....
Scan went well, very easy. His bone density is above average for his age, so good news.

We met with the nephrologist today at Cincinnati Children's. DS continues to have blood in his urine. The Dr is more concerned that he has protein and casts as well. The protein they tested for was albumin, which is a large protein so he said if that is leaking through that there are other proteins leaking as well. He sent the urine off to the lab and is looking for some other specific things (none of which I understand). Basically he said IGA nephropathy makes the most sense because it is auto-immune and does happen with IBD occasionally. He said there are literally 10,000 other auto immune kidney issues it could be so he is doing more testing to narrow things down. They would need to do a biopsy of the kidney in order to diagnose IGA. So we are waiting on more test results and they will continue to monitor the blood in the urine, protein, blood pressure and any swelling.

The interesting thing was when we discussed treatment for IGA he said prednisone then immune suppressants. He said the immune suppressants for crohn's are extremely mild compared to what they prescribe for kidney issues. It made me happy to hear his current treatment was relatively mild but freaked me out that the meds are so much stronger for the kidney issues.

It is terribly disheartening to be going down this road again. We are still hopeful that things will clear on their own. The Dr. said about 30% of people with IGA have it resolve. Keeping my fingers crossed!
 

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