Aa
Fever of Unknown Origin with rashes, swollen legs and feet pain
My soon to be 4 year old daughter has had daily fevers for 4 and a half weeks now. Temps vary from 99 to 103.5. On the onset of the disease she had rashes (I would call them red not salmon), right now they are almost gone. She complaints about leg and feet pain which seemed to have gotten progressively worse - she has not walked properly for the past two weeks. SED rate and CRP are both very high. She is very anemic with iron levels dropping over the period. She was hospitalized for almost 3 weeks where she got treatment for Rocky Mountain Spotted Fever and Kawasaki which were both ruled out after treatment. Diskitis is out as well thru an MRI, bone marrow was normal.
Her pediatrician thinks she has some kind of Juvenile Arthritis but two Rheumatologists (one from Wake Forest the other from Duke) do not think that's what she has. In the meantime the fever keeps going and unless she takes ibuprofen she will just lay in bed moaning and complaining. Even with the medicine she still does not walk. We are ready for the disease to either go away to never come back (best case) or for a doctor to give us a diagnosis and a treatment that makes our little star better. I know this is all very generic but is there anyone in this community with clues to our puzzle?
We appreciate any suggestions at this point.
Her pediatrician thinks she has some kind of Juvenile Arthritis but two Rheumatologists (one from Wake Forest the other from Duke) do not think that's what she has. In the meantime the fever keeps going and unless she takes ibuprofen she will just lay in bed moaning and complaining. Even with the medicine she still does not walk. We are ready for the disease to either go away to never come back (best case) or for a doctor to give us a diagnosis and a treatment that makes our little star better. I know this is all very generic but is there anyone in this community with clues to our puzzle?
We appreciate any suggestions at this point.
We are dismissed of hospital for 2 days now, everything fine. Final diagnose was E.Coli in the urinal tract found by culture test on urine. We still think this was combined with a viral infection (probably child disease). anyway, all symptons gone including swollen foot, rash, swollen neckglands. Antibiotics given was Neropenem.
bub
bub
We had a very, very similar situation with our 8 yr old daughter. This message is intented for people who come accross trying to find a solution for their case (as I did).
Symptoms: Some belly complaints for a week, than High fever for 5 days, rash from 2nd day, not eating anymore, became too weak, took her to hospital. Child had not 1 vaccination and we are ex-pats living in India with high risc-factor. Nothing significant on blood-test, neck-glands slightly swollen, child was put on general antibiotics (general because we didn't want to interfere with possible child-disease) for 5 days with fever-reducers. After 5 days, fever would come up for 4 consecutive days at exactly 14.00h with accompanying rash for 2-3 hours. When fever was not there, she was quite alert and playful. She had swollen feet all the time, difficult to walk. Local hospital referred us for 2nd opinion to big hospital in big city. When arriving there, child was already 11 days with fever and very low on blood pressure (officially in shock) so they put her on drip and start doing more serious blood tests (culture blood test e.g. not available in local hospital). We had similar SED and CRP very high, a belly scan revealed infection all over the abdomen. Docter puts her on other antibiotic and we have reached a first flatline - no fever - of 24hr, we are praying but we all feel that it will be ok. Blood culture test will be ready tomorrow, if this reveals anything, I will write another comment.
In the hope of maybe helping someone who migh go through this kind of difficult period.
All the best
bub
Symptoms: Some belly complaints for a week, than High fever for 5 days, rash from 2nd day, not eating anymore, became too weak, took her to hospital. Child had not 1 vaccination and we are ex-pats living in India with high risc-factor. Nothing significant on blood-test, neck-glands slightly swollen, child was put on general antibiotics (general because we didn't want to interfere with possible child-disease) for 5 days with fever-reducers. After 5 days, fever would come up for 4 consecutive days at exactly 14.00h with accompanying rash for 2-3 hours. When fever was not there, she was quite alert and playful. She had swollen feet all the time, difficult to walk. Local hospital referred us for 2nd opinion to big hospital in big city. When arriving there, child was already 11 days with fever and very low on blood pressure (officially in shock) so they put her on drip and start doing more serious blood tests (culture blood test e.g. not available in local hospital). We had similar SED and CRP very high, a belly scan revealed infection all over the abdomen. Docter puts her on other antibiotic and we have reached a first flatline - no fever - of 24hr, we are praying but we all feel that it will be ok. Blood culture test will be ready tomorrow, if this reveals anything, I will write another comment.
In the hope of maybe helping someone who migh go through this kind of difficult period.
All the best
bub
I started to write that this is wonderful news, but what I mean is that it's wonderful you have a diagnosis and a treatment plan. I will keep my fingers crossed too. Please let us know how she responds and the plan moving forward.
We spent the day at UNC Chapel Hill with a lot of blood work but doctors (ID, Rheumatologist, and Diagnose Specialist) gave us a diagnosis of Systemic Juvenile Rheumatoid Arthritis and we are starting treatment with steroids tonight. Doctors expect her to improve within 3 days. We are keeping our fingers crossed.
You are blessed to be near so many fine medical facilities. I am sure it just makes it that much more frustrating that, with all these fine doctors, you have not been able to get a diagnosis for your daughter. I am glad to read they are doing an MRI as that is much more sensitive. I am not sure if they can do this for chilren, but you may want to ask about and bone and joint scan. It is an MRI with contrast that shows inflammation in the joints that is otherwise not detectable.
I am glad to read you are seeing an infectious disease doctor, too. Some times these diseases have similar symptoms to autoimmune conditions. I had a friend who got mono and went through all kinds of treatments including rocky mountain spotted fever before she got properly diagnosed. Lyme disease was suspected in her case for awhile, too.
About celebrex, if she is not responding in a few days, talk to the doctor again. If it works, she should see a response to it within a matter of days. Another note about meds. If it is autoimmune, be prepared for any meds to take time. Some of them can take up to 3 months before they have an effect. Because of that, it can take a very long time to get the treatment tweaked out. I waited a year and a half after diagnosis for the right combination and dosages of meds to be found. I also highly recommend you research any meds prescribed. All medications have side effects of which you should be aware. This is especially important as you need to know if a new symptom could actually be due to the medications.
If you are not already doing so, start a journal and track her symptoms, medications and diet. This could provide clues to you and the doctors. It will also help you remember everything when you go to doctor visits.
Please keep us posted!
I am glad to read you are seeing an infectious disease doctor, too. Some times these diseases have similar symptoms to autoimmune conditions. I had a friend who got mono and went through all kinds of treatments including rocky mountain spotted fever before she got properly diagnosed. Lyme disease was suspected in her case for awhile, too.
About celebrex, if she is not responding in a few days, talk to the doctor again. If it works, she should see a response to it within a matter of days. Another note about meds. If it is autoimmune, be prepared for any meds to take time. Some of them can take up to 3 months before they have an effect. Because of that, it can take a very long time to get the treatment tweaked out. I waited a year and a half after diagnosis for the right combination and dosages of meds to be found. I also highly recommend you research any meds prescribed. All medications have side effects of which you should be aware. This is especially important as you need to know if a new symptom could actually be due to the medications.
If you are not already doing so, start a journal and track her symptoms, medications and diet. This could provide clues to you and the doctors. It will also help you remember everything when you go to doctor visits.
Please keep us posted!
Thank you for your kind comments.
Our daughter had X-Rays of her legs and feet and yet another blood lab on Friday. X-Rays were normal and we are waiting on the labs (although it seems her CRP remains stable at a very high level).
On Tuesday we are going to the Clinic for Pediatric Diagnosis at UNC Chapel Hill which specializes in difficult cases. We also have an appointment to see an Infectious Disease doctor at Duke on Thursday. We have an MRI of her legs and feet scheduled at Duke but because she is an out-patient it will take 3 weeks to get her in. We will look for another place where we can get it done sooner next week.
She just switched from ibuprofen to Celebrex for pain management but so far the new drug is not doing the trick. Her doctor told us drugs sometimes need a few days to be working effectively.
Regards.
Our daughter had X-Rays of her legs and feet and yet another blood lab on Friday. X-Rays were normal and we are waiting on the labs (although it seems her CRP remains stable at a very high level).
On Tuesday we are going to the Clinic for Pediatric Diagnosis at UNC Chapel Hill which specializes in difficult cases. We also have an appointment to see an Infectious Disease doctor at Duke on Thursday. We have an MRI of her legs and feet scheduled at Duke but because she is an out-patient it will take 3 weeks to get her in. We will look for another place where we can get it done sooner next week.
She just switched from ibuprofen to Celebrex for pain management but so far the new drug is not doing the trick. Her doctor told us drugs sometimes need a few days to be working effectively.
Regards.
My heart goes out to you and your daughter. I can only imagine what you must be going through. The problem with diagnosing autoimmune conditions is that they have many common symptoms. As I googled the symptoms listed above many options appeared. Juvenile idiopathic arthritis was one that sounded like a close match based on what you wrote above, but there are several diseases, autoimmune and otherwise, that share these symptoms.
What other tests have been run? Do you have any of the other results? What is the next step the doctors plan to take? Are they working together as a team to find the cause?
If you are not satisfied with the response of your current doctors, do not hesitate to get another opinion or 10 others if you need to do so before you get to a doctor who is genuinely interested in your daughter's case. See if there is a support group in your area for parents of children with autoimmune conditions. They may provide you with your best leads on doctors to see. You may also talk to them about your daughters symptoms and what they experienced in the diagnosis process.
A note about the diagnosis process. Sometimes it takes a long time to get a diagnosis. It depends on the rarity of the condition, whether or not your doctor has experience with it or is willing to research further. Most rheumys are fabulous. They are among the brightest of all doctors because of the complexity of their specialty.
I hope one of our parents will respond to your post. Please keep us posted and provide any additional information (even symptoms that seem unrelated) and we will try to help you through this.
What other tests have been run? Do you have any of the other results? What is the next step the doctors plan to take? Are they working together as a team to find the cause?
If you are not satisfied with the response of your current doctors, do not hesitate to get another opinion or 10 others if you need to do so before you get to a doctor who is genuinely interested in your daughter's case. See if there is a support group in your area for parents of children with autoimmune conditions. They may provide you with your best leads on doctors to see. You may also talk to them about your daughters symptoms and what they experienced in the diagnosis process.
A note about the diagnosis process. Sometimes it takes a long time to get a diagnosis. It depends on the rarity of the condition, whether or not your doctor has experience with it or is willing to research further. Most rheumys are fabulous. They are among the brightest of all doctors because of the complexity of their specialty.
I hope one of our parents will respond to your post. Please keep us posted and provide any additional information (even symptoms that seem unrelated) and we will try to help you through this.
Have an Answer?
You are reading content posted in the Arthritis Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
Could it be something you ate? Lack of sleep? Here are 11 migraine triggers to look out for.
Find out if PRP therapy right for you.
Tips for preventing one of the most common types of knee injury.
Here are 10 ways to stop headaches before they start.
Tips and moves to ease backaches
