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    Old 02-28-2005, 09:39 AM   #1
    brookiebear21
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    Question PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    Please help. I have reached about the end of my rope. I have a 2-1/2 yr old, i realized about a year ago that my son is always sick. This began numerous ER visits, specialists appts and hospitalizations. Over the past year to year and a half I have heard of soooo many diagnosis and opinions about what is wrong with him. He is at a very difficult age in that he can't communicate what is wrong or where it hurts.
    Here is a list of common symptoms:
    low hemoglobin
    very high LDH level
    blood in urine
    constant low grade temp. that sometimes spike up very high
    enlarged lymph nodes in neck, armpits, groin
    enlarged spleen and liver
    high ESR and CRP on a couple of blood tests
    high blood pressure
    unusual skin rashes. he started with what the ped doc called 'target lesions' they were the oddest thing I had ever seen. He got them on his legs, hands and face. He now has a 'butterfly rash' that is on his cheeks and nose. IT is bright red.
    on one u/s they noted that he was having a 'hardening of his spleen', and it also showed an enlarged lymph node in his stomach that measured 1.3 cm. and an x-ray showed lymph nodes enlarged in his chest.

    I can't explain it but I have this 'feeling' that something is wrong with my son. I feel like we are just wasting time and he is getting worse. He has been put into the hospital for numerous tests that all show that something is wrong and yet they can't tell me what it is. The first time he was admitted for a week and they told me that he was just anemic and put him on iron. my son has been on iron for 2 years now!! His hemoglobin flucuates, but the doc's make me feel like he just is 'iron deficient'. how can he be iron deficient if I give him the supplement!!?? And certainly that would not cause the myrid of other symptoms and blood results he has had.

    The last time he left the hospital they told me about the lymph nodes on the x-ray and u/s and his spleen being enlarged and hardening, and tell me that he should be fine, he must have had a virus of some kind. Do they not understand or listen? He is only 2-1/2! Oh and they told me that his constant low grade temp is probably just his average body temp which is higher than normal. My son does have times when he feels really good and sleeps normally throughout the night, during these times his temp is normal at around 37.0 all day long. But when he goes through his weeks of feeling bad, he gets up during the night around 6 times, crying in some sort of pain, gets his rashes, and has a constant temp of 38.0-38.5. So how do they account for the rising temps?

    I feel like I am fighting a losing battle, and yet the only one losing here is my son. I have three other children who are perfectly healthy, happy kids, so it isn't like I am overeacting, his symptoms and his illness is not normal!
    if anyone has ever been through this or has any insight, please post. I see his ped tomorrow who has always been extremely supportive and also believes something is wrong with my son, but has now said we should 'wait and see what happens'.

     
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    Old 02-28-2005, 10:08 AM   #2
    AdnRo
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    Sounds exactly like lupus (which can occur in children).
    Seems like they would have tested for that, though.
    Do an online search on childhood lupus, see what you think.

     
    Old 02-28-2005, 10:14 AM   #3
    allisok
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    Could be signs of leukemia. Have you had that checked?

     
    Old 02-28-2005, 10:28 AM   #4
    brookiebear21
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    I have thought that it looks like lupus, and that in certain types of lupus the blood tests are not conclusive. That is probably why they have made an appt for him to see a Rheum. doc in a couple of weeks. I know that childhood lupus is extremely rare, but his great aunt does have lupus so maybe that is what is causing him the problems?
    I know that when my son goes through his 'good time's, he is a happy, normal child, with a great appetite and sleeping pattern, i almost convince myself that he is fine and has outgrown his fevers and problems. But now when he gets his rashes and fevers and pain I know deep down that I have to trust my instincts. I find that the doc's are so dismissive anymore. I just can't believe what a battle it has been and my son is only 2-1/2!

    They have also thrown leukemia at me. Actually lymphoma. But the heam doc that I saw said that in kids that once they start to show the signs of leukemia they go downhill very quickly, and this has been an ongoing thing for 2 years. They talk about his lymph nodes not decreasing in size and always say he must have had a recent infection, but he has had these lymph nodes for over a year. Does anyone have any other leuk. info or experience that would be helpful. They have talked about a biopsy, but then always say that they think it would be unnecessary and put my son through pain when he doesn't need it.
    Thanks, I really appreciate the help

     
    Old 02-28-2005, 11:21 AM   #5
    allisok
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    Ok obviously this is more than a little viral infection. Coming on a web site for answers is not a good thing. You should have a professional diagnose. I can see you have not gotten any answers so far from the doctors you have, maybe you should change doctors or have him admitted to the hospital to get answers you so deserve. Demand answers.
    By looking at his symptoms and your reply from my post of possible leukemia symptoms, has he had all the blood tests to determine that he does not have it? Bone marrow testing?
    My other thoughts are Auto Immune disorder such as Scleroderma.
    Other possiblites could be thyroid disorders, has he had a thyroid function test? It could go on and on, I so want to help but I would look into a hospital visit, that way they will do all the testing he needs to finally have answers. Please keep us posted.

     
    Old 02-28-2005, 11:28 AM   #6
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    Hi,
    It really sounds like lupus! Yes, it's not that common, but the symptoms you describe are textbook!!
    Lupus is an autoimmune disease that is characterized by remissions and exacerbations (it gets better, and then there are "flare ups"). Which explains why sometimes you think it's gone away, but then it's back.
    Common symptoms include (this is coming from a pediatric medical text)
    1) butterfly rash over cheeks and bridge of nose
    2) discoid rash (red, round, raised patches)
    3) malaise (fatigue and feeling "yucky")
    4) althralgia (joint pain)
    5) recurrent fever of unknown etiology (unknown cause)
    6) photosensitivity (rash from sun exposure)
    7) nephritis (inflammation of kidneys-causes blood in urine)
    8) Blood disorders-anemia, leukopenia (low WBC), lymphoma (would cause enlarged nodes), thrombocytopenia (low platelets)
    There are, of course, many more symptoms.
    Lupus causes inflammation and damage to tissues and organs, the very high Lactase
    Dehydrogenase level indicates some liver damage (as does the enlarged liver) and the spleen, of course, seems to be involved as well.
    Lupus is very treatable and manageable, but needs attention to prevent damage to organs.
    I don't know what tests you've had done, but usually 4 or more of the symptoms I've described above (and that you listed) are suggestive of SLE.
    Here are tests used to diagnose:
    ANA (would be positive)
    anti-DNA antibody (present)
    BUN (elevated)
    gamma-globulin levels (elevated)
    ESR (would be high)
    I have a 2 year old son, also. I'm sure it is soo difficult for you to be going through this. Good luck to you, I hope your son feels better soon!
    Adrianne

     
    Old 02-28-2005, 11:59 AM   #7
    brookiebear21
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    Thank you for your posts. Yes i agree something is going on with him and I have this feeling I am just wasting valuable time. I have to say though that the last time he was in the hospital, admitted for over a week, they did nothing for him. Doctors think very little of investigative tests and often make you feel like you are overeacting. It took three days in hospital for them to even do a blood test. My poor son sat there for three days before they started any diagnostic testing, and then I heard repeatedly how busy they are and sick children come first. They look at my son, say he isn't doing bad weight/height for his age and he 'looks well'. But they don't see him when he is really sick and I don't believe it is normal for a 2-1/2 year old to literally fall asleep sitting up and not being interested in playing because he is so lethargic. I even got in an intense argument with the nurses and doctors about taking his temp rectally instead of under his arm. Most of the time they wouldn't even ensure the thermometer was under his arm so get an accurate temp, and there was a huge difference between the two temps. I know it is uncomfortable for my son, but I was there to get answers, and I was sick of the run around and yet here we are almost 2 months later and still no answers.
    They haven't really ruled out leukemia, they just said that his white cell count is within normal limits and that is the biggest indicator. But what bothers me is his LDH being so high. And the bone marrow won't be done in hospital because they said they won't do it unless his blood work shows signs of it. It is all so confusing. And now I see his doc again tomorrow and feel like I am back at square one. I have looked up a lot on the internet but it helps hearing other peoples suggestions, i had never looked up that schleroderma until today, i had never heard of it. I feel like the more educated I am the more I can challenge these doctors into doing something for him.

     
    Old 02-28-2005, 12:47 PM   #8
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    Quote:
    Originally Posted by AdnRo
    Hi,
    Here are tests used to diagnose:
    ANA (would be positive)
    anti-DNA antibody (present)
    BUN (elevated)
    gamma-globulin levels (elevated)
    ESR (would be high)
    I have a 2 year old son, also. I'm sure it is soo difficult for you to be going through this. Good luck to you, I hope your son feels better soon!
    Adrianne
    This was very helpful!! I know that they have done an ANA test which was negative, but I now read that in some forms of lupus it is negative 33% of the time. His BUN has always been high, which is what sent us to the kidney specialist but his creatinine has always been within normal ranges. His ESR has been high, and I will have to check on the gamma-globulin levels, I am not sure if that has ever been tested. I am intrigued by the elevated BUN though, because they have never been able to answer why that is always high.
    Thanks so much!!!

     
    Old 02-28-2005, 01:13 PM   #9
    AdnRo
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    BUN levels indicate kidney function (stands for Blood Urea Nitrogen)-
    Urea nitrogen is an end product of protein metabolism. It is the kidneys' job to excrete this end product. Therefore, if levels are high, it means that the kidneys are not doing their job properly (due to damage/disease).
    The level would be high in Lupus because the immune system is attacking organs (liver, spleen, kidneys, also can affect heart, lungs, brain, etc...)

     
    Old 02-28-2005, 01:43 PM   #10
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    I would be concerned abut the lymph nodes and the fever that spikes. To me it sounds like a form of Leukemia. You really need to take him to a specialist ASAP. The sooner it is caught, the better of a chance your son has. Lookup symptoms of leukemia...............

    Good luck to you and your son.

     
    Old 02-28-2005, 05:32 PM   #11
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    First of all, hang in there and trust your instincts. I have to agree with previous posts about the possibility of lupus. I have recently been diagnosed with lupus and probably had it since I was an older child. It can be "dormant", or something can trigger the symptoms and create a major flair-up. I've had periods of time when I have felt wonderful and times that were very painful. Not everyone with lupus has the extreme symptoms you might read about. Many people with lupus live normal lives and don't have many problems.

    I think you should ask your doc to take the "rule out" approach to diagnisis. Tests like the ANA and the ESL (sed rate) can fluctuate, which makes it difficult to be definite. Sometimes it can be helpful to take the approach where you think "this could not be lupus because.....". The treatment for lupus is usually a steroid like Prednisone along with anti-inflammatories like Naproxyn or Motrin. Children can have very strange reactions (emotional) to taking Prednisone so it has to be carefully monitored. I think your regular doctor would be wise to send you to a rheumatologist. They can really zero in on a wide variety of possibilities. Rheumatoid arthritis is also an auto-immune disease like lupus, with some common symptoms. Whatever it is, I believe you will get better care and help from a rheumatologist over an ER or a hospital of guessing doctors.

    As far as the leukemia question, it really doesn't sound as likely as other things do. Seems to me like the white blood count would make leukemia obvious after this much time.

    One more thing, if your son is not having these symptoms at the time of your appt with the rheumatologist, you might want to ask them if their scheduling would allow you to call ahead and bring him back on a day when he is having obvious symptoms. I know this helped me to get diagnosed. Kids have a funny way of making their symptoms go away in time for doctor's appts and hospital visits .

    Trust your instincts. You will never be criticized for loving your child and wanting answers!

    Post back with an update if you can.

    -K.

     
    Old 03-01-2005, 04:08 AM   #12
    brookiebear21
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    Thanks so much for all of your posts, it really has helped put some perspective on this and the courage to keep going with it. I have a couple of additional questions. First of all the BUN level. I know it is kidney related and it is an indicator of how the kidney's are functioning and that is what landed us at the nephrologist (along with the blood in the urine), however when we got to the nephrologist she said that the BUN doesn't really mean anything if the Creatinine levels are not elevated. I did not like this doc at all. Infact it is the first doc I have ever actually disliked. She doesn't have any children or bedside manner, she acts like my son is not even in the room. Has anyone had experience with the BUN level in that it is a strong indicator of kidney function. I did ask the nephrologist what else an elevated BUN means and all she said is 'dehydration' which in my sons case is impossible as he drinks like a fish. And now to hear that the BUN level is also linked to lupus is great to know because I can question my ped doc about it today.
    As for the lupus. I have some pic's of my son with his rash that he had last week and it is startling to see. I am glad that I can go with these pic's to my ped. today to show him, and he is the doc that took pic's of my son with his 'target lesions', i am hoping that once he sees them he will make more sense of what is going on. I also did not know that the ESR and ANA flucuate, which is helpful to know as it would explain why his ESR has always gone up and done. Would the CRP level also be in indiator of Lupus? I know the normal range is less than 8.0 mg/L and my son's on occasion has been 81.0 mg/l which is very high for a little guy. And his CRP is always elevated at the same time his ESR is elevated.
    One more question, would the rheumatoid factor always be positive if it were jeuvinile arthritis? If anyone has anything I should ask my doc about today or things I should question I would greatly appreciate the help. I took my son out to the arena yesterday to watch his sister skate. It was quite cold in the arena and by the time we left he had the beginnings of his rash again on his face. In Lupus, how long do the rashes last? Are they always associated with a 'flare up' and what causes these flare ups?

    Thanks again, this has been more helpful than i can say!

     
    Old 03-01-2005, 08:25 AM   #13
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    Routine clinical tests which suggest that the person has an active systemic disease include:

    sedimentation rate (ESR) and CRP (C-reactive protein) binding, both of which are frequently elevated in inflammation from any cause
    serum protein electrophoresis which may reveal increased gammaglobulin and decreased albumin
    routine blood counts which may reveal anemia and low platelet and white cell counts
    routine chemistry panels which may reveal
    kidney involvement by increases in serum blood urea nitrogen and creatinine
    abnormalities of liver function tests
    increased muscle enzymes (such as CPK) if muscle involvement is present.
    These kinds of abnormalities alert the doctor to the presence of a systemic disease with multiple organ involvement.
    Commonly used blood tests in the diagnosis of SLE are:

    Anti-nuclear antibody test (ANA) to determine if autoantibodies to cell nuclei are present in the blood
    Anti-DNA antibody test to determine if there are antibodies to the genetic material in the cell
    Anti-Sm antibody test to determine if there are antibodies to Sm, which is a ribonucleoprotein found in the cell nucleus
    Serum (blood) complement test to examine the total level of a group of proteins which can be consumed in immune reactions
    Complement proteins C3 and C4 test to examine specific levels

     
    Old 03-01-2005, 08:38 AM   #14
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    Tests to Assess Disease Activity

    When a person diagnosed with lupus develops new or recurring symptoms, laboratory testing of blood or urine can help determine if the symptoms are due to an increase in lupus activity.

    Disease activity correlates with a RISE in:

    CRP (C-reactive protein) binding
    ESR, or sedimentation rate
    Anti-DNA
    Liver and kidney function tests (AST, ALT, BUN, creatinine)
    CPK (muscle enzyme)
    Urine protein or cellular casts

    Disease activity also correlates with a DECREASE in:

    CBC or complete blood count (white blood cell count, hemoglobin, platelets)
    Complement components
    Serum albumin

    I'm sure you've done a ton of research on this, but try a search for "lupus lab values"
    and "symptoms childhood lupus". It's a bummer we can't discuss other websites on here.
    Good luck at the doctor today!

     
    Old 03-01-2005, 12:13 PM   #15
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    Re: PLEASE HELP, ill child, constant fever, rash, enlarged lymph nodes....

    could he of been bitin by a tick did they check for lyme disease.Strep also

    Last edited by I Love LJC; 03-01-2005 at 12:36 PM.

     
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