7 year old recurring infections

[NikkiM1985]

My 7 year old daughter has been sick on and off for the last 3.5 years.  It's almost identical symptoms every time except it is gradually getting worse. She starts with high fever that averages about 104.5 for about 24-48 hours, then she gets better for a day or two.  The severe headache sets in after that lasting for 24-48 hours.  She's in pain to the point where she doesn't leave bed and cries for someone to take her to the bathroom when she needs to go.   Sometimes all of this will be accompanied by swollen lymph nodes different places on her body.  Every time I have taken her to the ER they give her antibiotics and send us on our way. One time they did  blood work and found high white blood cells, said she probably had an infection somewhere they just didn't know where.   She will be good for a few weeks to a month and then it starts all over again.  The most recent trip to the ER resulted in them doing a urine sample and finding white blood cells in her urine.  When they sent it away for cultures it came back with no bacteria.  The most recent thing that has started happening is she gets little red marks on her face that almost look like broken blood vessels.  She has seen a paediatrician recently who is sending her for head MRI, ultrasound on kidneys and a long list of blood work.  She also is very thin and has a hard time gaining weight. I'm starting to really worry and was wondering if anyone else has ever dealt with this?!?

[Ken_PA]

What did her pediatrician say when you asked why a hip infection hadn't been tested for and ruled out?

[NikkiM1985]

Her paediatrician called me and said she was going to try and get her admitted through ER just to be on standby and she would call me back in an hour or two. I asked her if they had ruled out hip infection and she said no. 5 hours later she called me back and said they didn't even have a rheumatologist in the hospital period so it would be pointless to have her admitted. That I should give her until tomorrow to figure something else out and if nothing take her for a 4 hour drive to the best sick kids hospital to get answers.  I still may take her back to the same ER tonight as she's not doing any better.   We have a centre called patient experience where you can make complaints I guess.

[Ken_PA]

I'm talking about hospitals and ERs.

[Ken_PA]

In the U.S, there is the medical malpractice claim called 'failure to diagnose'. They have to take reasonable steps, called the "standard of care".

Maybe they have a good reason why they won't draw fluid and test it. You should hear it.

Can you call the Chief of Medicine there?

[Ken_PA]

Good idea. I'd print out the Medscape article that I quoted. Circle the parts that I'd quoted. I'd ask why they won't test.

Is there a patient advocate there?

[NikkiM1985]

Still trying to get ahold of someone at the doctors office. Temp back up to 102 and can barely walk. This is getting ridiculous. I feel like I have no where to turn to help her anymore.  I will be taking her to ER again when my husband gets home from work.

[Ken_PA]

So we have the 4 criteria from that one study:

- high fever? yes
- nonweightbearing? yes, she couldn't walk
- ESR greater than 40? no
- WBC greater than 12? yes, much higher at 16



From the other study, with 2 criteria?

- ESR greater than 20?  yes
- temp greater than 37.5°C? yes


That sure looks to me like she very much needs to be evaluated for a hip infection. I don't see how any reasonable doctor could disagree.


I know it must be difficult for you to absorb all of this in a short time. Unfortunately you don't have much choice, you can't just sit and wait. It's "momma bear time"  :)


I will check back repeatedly today looking for any followup questions or comments that you have.

Yes, I would talk to some doctor somewhere ASAP.


P.S. Maybe the pediatrician hadn't considered a hip infection because she has a very good reason. If so, that would be crucial to know. What is that reason?

[Ken_PA]

What I would want is to confront a doctor about the possibility of a hip infection (Pediatric Septic Arthritis) and either get the fluid drawn out for testing or else get a very-very-very good reason why not.

It seems very-very-very odd that the ER docs didn't even consider it. But then, they didn't consider a Periodic Fever Syndrome for 3.5 years, until now. Still, a hip infection should be right in their area of practice - whereas a PFS is not.  The ER is mainly for diagnosing and handling emergencies, of which a PFS is not, but a hip infection is.

Can you talk to whatever pediatrician is covering emergencies for the doc on vacation?

[NikkiM1985]

Ok so her ESR was 24, WBC 16 and RBC 10.  I was told yesterday to stop bringing her to emerge after they seen the ultrasound because they couldn't do anything more for her. Her paediatrician is out of the office now until Monday.  She has no visible swelling or redness, although the joint is warmer than the other.  I've had her to the ER at the children's hospital, thinking of taking her elsewhere maybe?

[Ken_PA]

Well... no. The point is that a hip infection hasn't been ruled out. If a hip infection goes unchecked, she can have permanent damage for the rest of her life. The immediate goal is to forget for now about the rheumy and get her checked out immediately and thoroughly for a hip infection.

Only then would you wait for the rheumy appt.

A hip infection is classified as a medical emergency. If her ESR and WBC are higher than the numbers cited above, then that is strong evidence that she does have a hip infection. You really need to get those numbers emailed or at least have them read over the phone to you.


Here is another very relevant article:
http://emedicine.medscape.com/article/970365-overview#a4
"Pediatric Septic Arthritis"

"Nontraumatic joint pain with evidence of arthritis, such as swelling, warmth, or redness, requires emergency medical attention."

Medscape is an authoritative source (as opposed to something like wikipedia), so doctors should take Medscape articles seriously.

[NikkiM1985]

Thank you for all the info, it definitely helps and gives me a different perspective on what it could be.  She has been living off Advil and Tylenol for the last two weeks for fever and now pain. (I can't see how that would be healthy). But I'm really left no other choice. I guess now it's just a waiting game to see the rheumatologist which could be weeks to a month away.  The only paediatric rheumatologist around here is on maternity leave and they are having difficulties finding a replacement.  I'm tempted to see about a referral to one in a larger city.  She shouldn't have to keep living like this because someone couldn't get their crap together.  
Ps thank you again for your help it is truly appreciated!!!

[Ken_PA]

Fever reducing and pain decreasing tend against hip joint infection. Still, I wouldn't want to bet her hip on that.

Here is something that stands out:
http://emedicine.medscape.com/article/1007186-workup

=====begin quote=====

The erythrocyte sedimentation rate (ESR) may be slightly elevated. One study found that the combination of an ESR greater than 20 mm/h and/or a temperature greater than 37.5°C identified 97% of individuals with septic hip.[9]
Another study by Kocher et al used 4 independent predictors of septic arthritis to distinguish it from transient synovitis and the need for further workup.[10] They concluded that patients who were nonweightbearing and had a history of fever, an ESR greater than 40 mm/hr, and a WBC count greater than 12,000 cells/mm had a 99.6% predicted probability of septic arthritis.

===== end quote =====

That's from Medscape, which is an 'authoritative source'.


In the other direction, here's a nice 2 min video on Transient Synovitis:
https://www.youtube.com/watch?v=KUzQGEghiYs

It's cause is not understood. Hopefully, that's all she has -- though you, of course, should still get to the bottom of her suffering.

Didn't they at least say to takes NSAIDS?

My guess is that she has a very active immune system, which results in over inflammation. That is beside whatever it is that triggers her episodes.

[NikkiM1985]

She managed to get out of bed on her own today and seems to be walking a little better.  Her fever is also down to 37.6.  They didn't rule out hip infection they just said it would be cause by inflammation.  I will see if I can have her blood work emailed to me from the doctors office.

[Ken_PA]

I don't want to be overly alarmist, but you didn't mention that they ruled out a hip joint infection.

It would be very helpful to know her actual numbers for WBC and for ESR on the blood tests that she had.

[Ken_PA]

Knowing about the hip problem changes everything. You need to plunge into this immediately and make sure that she does not have a bacterial infection in the hip joint. If she does and it is left unchecked, then permanent damage can result. The probable way to best check is to have them use a needle to draw some of that fluid out. If it's cloudy or has pus then that's bad. They will use lab tests to look into what organism is possibly in there.

If/when I hear back from you, more can be discussed.

A hip infection shouldn't ordinarily be periodic but it's possible. A hip infection is the worst thing possible here and needs to be ruled out before looking at other causes --  such as "transient synovitis", which is more common than infection but shouldn't result in *high* fever. High fever tends to mean infection in the joint.

She most likely shouldn't be walking on that hip.

[NikkiM1985]

Update:  fevers have increased and she can barely walk. periodic fever syndrome is what they have mentioned now both at ER and paediatrician's office. We went to see paediatrician today before her ultrasound and she thought it would be a good idea to check her hips as well. She has a large amount of fluid in her right hip and they sent us to emerge to have results read. They told me that she is being referred to a rheumatologist and there is nothing more anyone can do for her until she sees the rheumatologist.  She has had a Cbc done and it showed elevated white blood cells, border line low red blood cells and inflammation markers?  We have no history of autoimmune conditions in our family.

[Ken_PA]

Hi, have you ever heard if Periodic Fever Syndromes? That results when the immune system isn't right. Sometimes there is no infection at all, but the body reacts as if there is an infection. Do you have any family history of autoimmune conditions like lupus or Raynauds?

Or maybe it's a rare reaction to something she eats? I'd keep a diary so that you can try to match the arrival of her symptoms with whatever came before.

Or maybe it's a fungus or parasite, or a rarer bacteria that doesn't get detected on standard tests.

Whatever she has is probably very unusual and might be difficult to discover. An ER is not  place for diagnosing rare conditions, so it's very good to be with the pediatrician who is doing the detective work. Just be prepared that it might take a while. It's probably very helpful to get CBC tests done during the next and all future episodes.

Since the lymph nodes go down, that's very likely not lymphoma.

How were her platelets on the last CBC test?