Help - 3 yr old sick for past 5 months, questions!

[WorriedMom2008]

Im new here so bare with me.  I am very worried about my 3 year old daughter. She got sick in October. I thought she was getting the flu or something. She ran fever low and high grade for four weeks off and on, but mostly constatly. It started out like a bad cold or sinus infection.  Her pediatrician put her on antiobiotics, but she didnt respond to them at all. She started complaing of her legs feeling funny, a few days later started limping, then over night she couldnt walk b/c the pain was so bad in her legs and hips. We took her to ER at a childrens hospital. She was admitted and kept for 3 days. She was released with a "leading diagnosis" of discitis. Her sed-rate was 73 when normal is 5-10. The x-rays showed some narrowing in her disk space but the MRI was normal, so they were lerry about diagnosing her as discitis in the first place.  

She gradually started getting a little better over the next few weeks through November and beginning of December. Around Christmas she started running fever, which got up to 102.5 again with some congestion that lasted for a week. It went away and then the fever came back at the beginning of Jan. again. It lasted for another week. I took her to her pediatrician who couldnt find anything obvious wrong with her (ear infection, strep..) they did CBC and sed-rate test it showed normal and sed-rate was normal too.  A week later her fever came back again and lasted for about another week.

Then the first week of February she told me her legs hurt again on several occasions and then she started running fever Again. So I took her to the pediatrician who put her on antibiotics again to see if it would help if it was an upper respiratory infection, but she didnt respond to them again.  

Her fever got up to 104.3 and wouldnt stay down very long with motrin/ tylenol so I took her back to the childrens hospital that she was orginally at. They admitted her on Feb 8.  Her fever stayed high the first 2 days (103-104.3), she complained of leg pains without a limp though, and her arms were slightly shaky like they bothered her.  They did a lot of blood work, x-rays, and an abdominal series ultrasound, and an EEG.  When hew fever would go down for 3-4 hours at a time, it was like she was a completely different child. She played and laughed, but as soon as the fever started climbing she would be very pale, droopy eyes, she would have episodes of blank staring, she only ate a few bites the entire week. Her fever finally broke the third night (after 8 days of continuous fever).  We were released on the 4th night in the hospital.  x-rays were normal, all her blood work was within normal range, except her Sed-rate was elevated back to 48.  Her ultrasound showed "slush" build up in her gallbladder, but nothing else.  Her EEG was normal. They tested her for several viruses, mono, cat scratch fever, and several other things. We saw several infection specialist, immunologist and several other people.  They sent us home and set us up a follow up appointment with the infection specialist 9 days later.  

She didnt run any fever within those 9 days but she did complain of her legs hurting, and she started stumbling around and fell several times without anything being  in her way.  We went to the appointment on Feb 20 in which he drew more blood, re-ran some her blood work stats, and told me to keep a journal of her for the next several weeks to documents all her complaint, and fever patterns.  Her CBC was within normal and her Sed-rate was down to 16. Then if all these blood test and such keep coming back normal and negative he will most likely set up a bone marrow test first week of April.  He told me he wouldnt need to see us unless something drastically changed or her fever stayed high for over three days.  

Tuesday, Feb 25 her temp started rising again but stayed between 99-100 all day.  Wed Feb 26 she woke up with 101 fever and it got up to 103 before I gave her motrin.  She compalined of her legs hurting again. She woke up all night long crying, she said her head hurt 2 times and she has another stuffy nose, paleness, and puppy dog eyes again. Her fever stayed through saturday. Then gradually started dropping in which it fluctuated between 100.4-99 to normal today. (Saturday evening).  We have an immunology appointment on Tuesday.

Besides her fevers her other symptoms include:   leg pains that come and go, appetite drastically lower, horrible night sweats (to the point we only let her sleep in panties because she is so drenched), starring episodes (a few times she told me everything was blurry), she falls frequently and randomly, She doesnt sleep throught the night she always wakes up crying several times a night, droopy eyes and paleness, random bruising and the bruises stay for a long time (she is not anemic they tested for that).  Her symptoms come and go.  Sometimes you wouldnt even know she was sickly, and other times she just lays around and wants to sleep and she doesnt even want to talk to anyone.

I am very concerned because I have not been given any one diagnosis and they arnt sure if her discitis was related to what is going on with her now (which I personally think it is). She has been running these fevers going on five months. They said they know it is coming from somewhere but dont have any real answers for me yet.

I have been doing a lot of research and have a few questions about everything.  Could this be leukemia or something like it???????     Her white/red blood counts have been within normal, can you still get leukemia with normal counts?  The first hospital stay in Nov, it was on the low side of normal.  Just her sed-rate has been high 2 times before.  They looked into rhuematoid arthritis, but she doesnt have any rashes or noticeable swollen joints.  If anyone has anything similar or any advice or answers for me..please help!!  I have to miss work every other week to stay home with her.  

[Ken_PA]

Him, 'sed rate' is short for 'erythrocyte sedimentation rate'. Erythrocytes are the red blood cells. During times of inflammation, they tend to stick together and drop to the bottom of the test tube, like sediment.

So, in summary: it could be a sign of infection in this case.

The doctors will need to discover why this keeps recurring. There could be a variety of causes so it's too early to think the worst. Good luck.

[mom_tn]

My son is 4 years old and runs high fevers off and on since Nov 2010.  He complains of his legs hurting and has lost a couple of pounds.  No other symptons except the legs and fever.  He went to a new Doctor last week and she sent him to Children's Hospital for blodd work.  He has a high sed rate(?) and we go back this week.  What does this mean?  I have an older son who is very healthy so I am new to all of this.

[Lisa0725]

I agree with all the people who have said get the bone marrow biopsy sooner.  She has alot of symptoms of luekemia.  My husband had them all too and gut problems as well.  Especially the night sweats, bruising, thats due to a lowered platelet count.  He also had pain in his legs, they say the long bones hurt the most.  Go to a pediatric oncologist and demand a biopsy.  My husbands abosolute nuetriphil count actually did the opposite of the norm and bottomed out instead of going sky high but it can go either way.  They don't necesarily need to see blast cells in the peripheral blood but if she does have luekemia it will show in the bone marrow.  I'm really not trying to scare you but both my husband and niece had it. (My niece had a very rare adult form that effected her red and white cells diagnosed when she was 16)  My husband is still with me and had a bone marrow transplant from his sister and is now just dealing with the rejection (which is normal) and side effects of the meds.  But please, get it done even if to rule it out because you don't want to wait with this stuff.  Again I'm not trying to scare, just make you aware.  Good luck to both of you

[Medicdano]

Don't ever second guess you gut instincts.  My son is alive because I insisted 7 yrs ago that he had Leukemia...he to had fevers and ailments (ear infections and colds) not responding to 6 consecutive antibiotics.  Logan was 2 at the time and could not speak yet so he did not complain but I did notice he had stop smiling and laughing and was so much more lethargic.  Logan also had swollen glands in his neck (feel for marbles in the neck area) His Liver was extremely swollen too but only found after I insisted he had Leukemia 4-6 months of being sick.  Don't wait Dont feel like you are being a pain...this is your duty as a mother if something is not right MAKE the Doctors find it...Don't give up there are plenty of doctors out there look for another if you are not satisfied with who you are seeing.  By the way Logan is now 9 and healthy as can be...he had been given 24 hours to live with a WBC count of 400 thousand very sick little boy.  

[paulandsabrina]

my wife just died of lymphoma i dont mean to scare you but she was mis diagnosed for 4 months 2 what was her ldh was it elevated at all thats a tumor marker it doesant mean she has cancer but if its elavated i would get a second opinion

[Mother of bailey]

You as a parent have the right to demand ferther testing....if the drs u have right now wont do it find one that will..u know when there is something wrong with ur child...drs told me when we first went to riley chrilderns hosp..that we were luckey that our familey dr lisend to us and done test,he said most of the time thay dont dignose until thay are very bad and in hospital bucuse dr just dont lision all the time...so please demand further testing u know that ur child is sick ur with her evedryday not them...good luck!!!!!!!!!!!!valerie

[WorriedMom2008]

I went to her immunology/rhuematoid appointment and he wasnt that helpful. he just basically looked her over physically and mentioned that maybe it is just coincidence that her fevers are coming every week or two and that maybe its just a new virus she is picking up every other week.  I have an extremely hard time convincing myself that it is as simple as that, but yet he wants to see us again in 3 weeks and he wants the Infection Specialist to make all the major decisions. Not only that, she started running another fever wednesday night and it is still here, this morning it was 103.7. she compalins of her leg pain almost every day, whether she is running fever or not. She slept all day yesterday and only got up to go to the bathroom. I'm getting very aggrivated and worried that I dont have any answers except for what the immunologist said.
Should I demand further testing??????   Me, my husband, and our families strongly feel that it is NOT just coincidence that she is getting sick back since October.  We are the ones that witness her going through this every day. When she goes to most of dr appointments, she is on a good day and not running fever so they only see her when she is perfectly fine. The immunologist saw her while she was in the hospital and very sick; he just told me at her appointment that he was extremely worried about her while she was in the hospital, but now that he sees her out of the hospital she seems fine.  I just wanted to say "what were you worried about???  nothing has changed except that she is in a good "episode" right now!!! "  and here I am three days after the appointment with her running high fever again.!!

[jenny629]

Hi i have a 3 year old daughter olivia she is also saying some of the same stuff your child is im really scared she has a doctors next friday is says her legs hurt all the time and head aces she has 2 lumps on the back of her neck she is always veary hungey and drinks alot of fluds she has mood swings all the time.........thanks jenny from johnstown ohio

[Mother of bailey]

Hi i would ask for the bonemarrow sooner also....my son was diagnosad with leukema almost 2 years ago will be 2 years on the 28 of this month...he also had leg pain very bad headecks....and bruseing...im not trying to scare u but a bonwmerrow test is the onley way u can be sure if he dose or dont....and thay my find the reson she is so sick if not leukemia....good luck and ill be praying for ur little girl..........Valerie

[Monette77]

Ask for that Bone Marrow test sooner than April.  My son was diagnosed with Leukemia
18 months ago. He had none of those symptoms. He had two fractured bones (hand and foot) in February and and May. They took forever to heal. He had fainting spell in May, we had complete physical and blood work done. All looked good.  In August he complained of headaches (we wrote this off as cronic sinus problems) and fatigue.
One morning he woke up, extremely pale and shallow breathing. I took him to the emergency room, they did blood work on him.  It showed leukemic cells (just less than 3 months prior, there were none).  In less than 24 hours we were in Memphis at St. Jude's Research Hospital.

The reason I responded here is that we have several St. Jude friends that have mentioned the kinds of symptoms that you have.  It took months to diagnose them.
I'm not trying to scare you, but a bone marrow test would determine or rule out Leukemia.  For more St. Jude's information, go to www.stjudes.com. It is a very informative website.


Good luck to you and your child . I will keep you in my prayers.

[askingyou]

That's frustrating when you don't know what is going on and can't get any answers. Look for some other symptoms besides the fever and leg pains.  Keep  tract on a journal or something , with what happens before , during and after each episodes of the fevers. Including the foods that she ate.  Look for possibly any other complaints your daughter has.  Our body does give clues on to what is going on. Does her body give any clues before the fever starts?
She started off from a flu or cold?  Did they check a stool sample?
Did they check for Rheumatic Fever?
They didn't treat her with any viral or antibiotics?

I know my grandson had similar episodes of fever and pain in the legs.. arms, eyes and his head that moves around.  Right before he starts getting a fever, he turns all pale and his ears get beat red. He also had that stare glossy look when he didn't feel well.   We thought maybe it happened after each time eating ice-cream.  Daughter in law took him to the doctor.  We  also thought maybe it was juvenile rheumatoid arthritis. The test showed negative.  But because of his history of Salmonella when he was 3, he is now 8, the family doc said the bacteria stays with him.  She suggested that he eats yogurt Everyday.  That seemed to have helped him.  I'm sure in due time, you will be able to come up with something..   just try to stay strong.