3 yr old sick for past five months!

Thanks to everyone who replied to my earlier posting of this subject.
Just for a recap:   My 3 yr old daughter was was admitted to the hospital and "leading" diagnosis was discitis in Novemeber after 4 weeks of fever and what we thought was the flu, she couldnt walk and was in A LOT of pain. MRI was normal and x-rays showed some narrowing of disk space, blood work relatively normal and sed rate was 74. It took her a good 6-8 weeks to walk normal again.
End of December, she started running fever again with some congestion/cough.  She ran fever off and on through January into Feb. Took her to the Dr. several times, they tried antibiotics but nothing helped her or even slacked the fever off.
Feb:  admitted to pediatric hospital again.  Her fever wouldnt drop below 104, complained of leg pains, cough.  They did x-rays, blood work only thing was elevated Sed rate (50) and abdominal series ultrasound which they found large sludge build up in gallbladder,  they referred us to infection specialist
She continued with fevers off an on through march.  Specialist just wanted to watch her and see if her blood counts flucuated or not over a six week period and if her fevers would continue.  They said they werent going to be alarmed until any new symptoms appeared or her blood work was way off. They told me if it came down to it they would do a bone marrow testing (which they havent done yet).

Other symptoms beside fevers:   leg and back pains, sometimes arm pains, paleness, droopy eyes sometimes, tiredness, severe night sweats and she doesnt sleep through the night -she gets up crying several times, some of the fevers she had congestion and cough

The fact is my daughter is still sick,  she has recurring fevers every 4-7 days still and the fever stays another 5-7 days since December.  They have not given me a definite diagnosis.  This is April and the fevers have not slacked off.  Last thursday she came to me crying that her back and legs hurt. The next day she woke up with 103.4 fever, the fever stayed through the weekend and even with motrin it only went down to 101.  She did not have any congestion but had a constant cough.  I called her dr immediately monday morning and they sent me to do blood work and x-rays.    The results came back, the chest x-ray showed peribronchicial markings,  blood work was relatively normal:  Low side of white blood count (4), increased lymphocytes count 58%, slight increase sedrate and CRP count. They also said she tested slightly positive for mono this time., they said she probably just acquired that in the past week and it had nothing to do with the other months of sickness.  

I spoke with her specialist and I am waiting on a call back from them to let me know if they need to see us sooner than her May appointment date.  Im not sure if this classifes as the "new symptom " they were looking for to procede with further testing.
  
My question is....Im still very worried that this is something more serious like leukemia or lymphoma.  Any input or information would be appreciated!  

[Dennis MD]

Hi.
I understand what you are going through.
I am just wondering if your daughter has been tested for tuberculosis and if this condition was even considered and ruled out.  This condition can cause some of the symptoms your daughter is experiencing like chronic cough and intermittent fever.  There is also a condition called Pott’s disease caused by tuberculosis and this usually involves the lower thoracic or upper lumbar spine.  
Other chronic infections should also be ruled out as the cause of your daughter’s symptoms.
I think you may need to bring her back again to her doctor for further evaluation.  Specific treatment will follow once there is a more definite diagnosis.  
Please do post your updates.
God bless.

[WorriedMom2008]

Yes they have tested her several times since November for TB. They tested her for all kinds of specific viruses, cat scratch fever, strep, mono.  Everthing always comes back negative. When they diagnosed her with discitis, they were not completely sure it was even that since her MRI on her back was completely normal (which with discitis it is suppose to be abnormal) and they said hers was the worst case they had ever seen.

I spoke with her infection speciailist yesterday and they feel there is no need to bring her in earlier than her May app. date. They said they feel that the bronchitis and mono are something completely new like a secondary infection even though bronchitis and mono are not usually known to set on at the exact same time. and they want to run a more extensive mono test with the ep-barr titers since sometimes the quick mono testing can give false positive results.   She is still running a low grade fever today (101) and she has had this particular fever for 8 days now.   And I guess they do not consider these two things a "new symptom" for what she has been going through even though she did not previously have them before.    The only think they have even mentioned in the past several months is maybe it is something like chronic fatigue syndrome, but they did not want me to use that diagnosis.   Should I be looking for a second opinion somewhere?????  My daughter was a completely healthy child until Nov. Never got sick, NEVER ran fevers, very healthy and active.  

[Dennis MD]

Hi.
Thanks for the update.
Chronic fatigue syndrome is like a waste basket diagnosis.  I’m not even sure if that’s applicable to a 3-year old child.  But then again, your daughter’s doctor told you not to use that diagnosis.  
You may seek second or third opinion from another specialist.  The other specialist can help in the diagnosis and management of your daughter.  There may be a need to repeat some of the tests already done on her.    
Good luck.

[WorriedMom2008]

My daughter has not seemed to improved much since the last time I wrote. Her fever subsided approx 10 days after it began this last time.  It came back for about 2 more days about five days after that.  Her cough is still very persistant and not slacking off, still "crackling" some when she breaths deeply and this is going on the 4th week after she had her chest x-ray and blood work.  Yesterday she complained and started crying of severe stomach pains and pains in her chest, to the point she asked me to take her to the Doctor to make her feel better.  Her tummy looks"bloated" as if she just ate a feast, but she wouldnt eat anything at all yesterday and when she tried drinking something she cried even more saying it hurt her.  she feel asleep crying and this morning when she woke up she complained of her lower back hurting and her tummy still hurting and would not let us touch it.  She has an appointment with the infection specialist on the 14th.  Should I be concerned and bring her in sooner?????   Im still very concerned that this something like lymphoma or leukemia, do I have reason to question this and bring it up at her appointment?????