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Help - 3 yr old sick for past 5 months, questions!
by WorriedMom2008, Mar 01, 2008 09:10PM
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.
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.
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.