Discussions By Condition: I cannot get a diagnosis.

Sick daughter - no help from doctors

Posted In: I cannot get a diagnosis. 26 Replies
  • Posted By: luther626
  • March 10, 2008
  • 05:55 AM

My 7 year old has had recurrent fevers for over 18 months. They occur monthly and last 2 - 3 days. They started as low-grade fevers. They are now getting up to 104 - 105. During her fevers she has achy joints and back, sores in her mouth and a strange odor. She has also had digestgive issues and has had very little growth (height or weight) in over two years. Blood tests are normal except positive ana and ssb antibody test. Doctor thinks its strep throat or ear ache. HELP!


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26 Replies:

  • Take her to a Hemotologist. They specialize in blood disorders. A temp is a sign of infection somewhere and some blood disorders signal by temp but most of the time it's a steady low grade fever. Either way the only doc that's going to help and look deeper into the issue is a specialist. If she's not growing properly I think an Endocrinologist is who deals with that but not so sure. The pituitary gland needs to be checked!!! MRI ASAP!! If there is a tumor in the pituitary gland in the brain it will cause people to gain like 50 lbs in a month or lose 50 lbs in a month or not grow!!! Or grow too big!! You would have to go to a neurologist for that and he may have more answers for you.If there's one thing I know, never, ever believe ANY doctors, (even your family doc you've had for 20 years!) about anything without concrete PROOF that he or she is right. If he or she is not right then they would treat her for the wrong thing while whatever was causing all this to begin with is getting worse.Have you researched all this through the internet to see if other people have a similar problem?? I hope you can find out what's wrong soon~say lots of prayers I'm sure your not exactly feeling well yourself having to deal w/ this is frustrating. Have a blessed day~CathyMy email is cathyaycock1980@yahoo.com
    Anonymous 42,789 Replies Flag this Response
  • Make sure the doctors that are doing these test are actually doing them. Ask for copies of all of the blood work~start faxing her blood work ALL of it for the past year (if you can get it) send those results to the Mayo Clinic, MUSC in CHarleston S.C., St.Judes, whoever will look at it send it!! If it were my child I would and you wouldn't be on this forum if you didn't have a feeling the docs don't know what they're doing.I'm wondering these days what the docs are actually in it for? They still don't know what's wrong w/ me but I do! I have every single text book symptom and can't get anywhere. I'm a 27 year old mother of three and I hate to think I will be leaving my husband to raise our children alone b/c the docs are too busy collecting office visits than to do a little research or more test.Two test that will benefit you daughter either way is an "inflamation" test (I think that's what it's called??) it's just a simple blood test and the important one would be the "Cancer marker test". Not trying to scare you but you can never ever be too safe when it concerns your child!!GOod luck!
    Anonymous 42,789 Replies Flag this Response
  • Oh, I feel so sorry! My daughtr (now 15) had something going on at that age as well...in her case looked like orthostatic initollerance and possible chronic fatigue to boot. stress also seemed to play a role in her case. SHe is better now with actually very little intervention of meds or anything...she lost time from school and had to rest even at school on occassions...but that is the way it goes sometimes ...but was ******n her...and mom! With the growth problem, that seems to point to a possible pituitary problem or another problem of the endocrine system.. That is, the pituitary may not be producing enough of some hormones to help in growth....it is possible she has more than one thing going on....I would probably get her to an endocrinologist ...one who may also specialize in pediatric endocrinology. The endocrine system is quite complex and a good doctor is a must. The endocrine system can also (I believe) effect the body's ability to regulate temps...not sure if this may have anything to do with the fevers or not. I hope this helps a bit. I understand how concerned you must be! Joan
    Joan5555 316 Replies Flag this Response
  • Ask your local library to get you a copy of this article: Distinguishing Among Prolonged, Recurrent, and Periodic Fever Syndromes: Approach of a Pediatric Infectious Diseases Subspecialist. Pediatric Clinics of North America, Volume 52, Issue 3, Pages 811-835S. Long
    aquila 1,263 Replies Flag this Response
  • It sounds like she might benefit from seeing a rheumatologist and gastroenterologist. Before she goes, make sure it's not something like celiac disease, which i hope they have already checked for.Best Wishes.
    Anonymous 42,789 Replies Flag this Response
  • I have copies of all her blood work. How do i go about getting help from the mayo clinic or other hospital. She is currently seeing a rheumatologist and a pediatric gastro dr. The gastro dr. doesn't see any connection between her stomach pain/gas/digestive issues and the fever/achy joints/headaches. The rheumatologists figures they are probably somehow related but still thinks the recurring fevers are from an infection like strep throat or an ear ache. I have been told that she has received consults from the infectious disease doctor here in town but I don't know that to be true. I have done quite a bit of research on my own and there are so many different things it could be. All I know is i am tired of dealing with the doctors who don't know whats going on but wont admit it. They aren't willing to send me on to someone who can help. I am looking for any help I can get at this point.
    luther626 5 Replies Flag this Response
  • This is very similiar to a thread we had a while back, a person trying to find answers for their grand child who had a monthly fever for six years I believe. I suggested West nile fever, they were going to ask the question but we never heard back.http://forums.wrongdiagnosis.com/showthread.php?t=26076On the subject of the positive ANA, do you know what the titer was -1:20, 1:80?. also the pattern- homogeneous,peripheral,speckled, nucleolar?.
    TerryG 120 Replies Flag this Response
  • I'm so sorry you are having such a frustrating time with the doctors. It took me 8 years to get diagnosed with my illness and looking back, the most painful part of it was that the doctors did not admit that they did not know what it was. In my case, instead of saying "I don't know", they called it depression/psychosomatic, which was very painful because it left me feeling like I must have been seriously mentally ill to not be responding to the antidepressants and therapy. It sounds like your daughter's doctors are taking her symptoms seriously, but are just clueless. This can be extremely frustrating. Rest assured that YOU are doing all that you possibly can. This site is a good site. I know I post here a lot looking for people who might have my illness, so they can get diagnosed faster than I did. Hopefully other parents or patients with your daughter's illness will read your posts and offer help that can lead to a proper diagnosis.Have you tried the multiple symptom checker here? Also, it might be helpful to visit some of the rare disease sites for more ideas, in the event she has something rare. The only thing I can think of is celiac disease, but I don't think it can produce such high fevers. Maybe I'm wrong, though.What might be helpful to the doctors is to keep a set of organized lists they can keep. One list should be a summary of all specialists you guys have been to and their work-ups and conclusions. A list of your daughter's symptoms is also helpful. Another really helpful list is one summarizing all labs and studies. Include the dates of each test and the "normal" range values in addition to your daughter's results. This will help avoid repeating the same tests twice, and may help push for referral to sub-specialists.I'm sorry you don't have answers yet. I hope you get some SOON.Best Wishes.
    Anonymous 42,789 Replies Flag this Response
  • I just looked in the multiple symptom checker using the following 5 symptoms (you can't really do lab values even though the ANA and other antibody are helpful hints): digestive symptoms and fever and head symptoms and joint symptoms and weight loss:Here's what it spit out:1. Acute myeloblastic leukemia type 32. Back tumour3. Cat scratch disease4. Crohn's disease5. Dermatomyositis6. Henoch-Schönlein purpura7. Hip cancer8. Idiopathic hypereosinophilic syndrome9. Leukemia10. Lupus11. Lymphomatoid Granulomatosis12. Melioidosis13. Mixed connective tissue disease14. Optic neuropathy, anterior ischemic15. Polyarteritis nodosa16. Rhabditida Infections17. Rheumatoid arthritis18. Rib Tumor19. Sickle Cell Anemia20. Spirochetes disease21. Syphilis22. Temporal arteritis23. Tuberculosis24. TularemiaYou might want to try other combinations.Hope this helps!
    Anonymous 42,789 Replies Flag this Response
  • Sorry to post a third time, but I was just thinking about your case and started wondering if this couldn't be Crohn's disease? It can produce GI symptoms, drop-off in growth, arthritis, mouth sores, and GI symptoms and fever. Of course, other things can do this too.Also, I looked up anti ssB antibodies in a book I have on lab tests. It didn't really give straight-forward suggestions (and did NOT link ANA or anti ssb to crohn's- which is what got me to pull the book out in the first place), except to say that various patterns of antibodies are used to diagnose sjogren's vs lupus, vs rheumatoid arthritis vs scleroderma vs other autoimmune diseases, etc... Since I don't know all the other antibodies they tested, it's hard to weigh in on this. Antibody patterns are very complicated and the more I think about it, the more I think your daughter's rheumatologist is probably who will figure this out. I'm thinking that if you continue to get no answers from her rheumatologist, perhaps going to another one might help. Make sure that all doctors involved know that you want a diagnosis ASAP. Perhaps a rheumatologist at a large teaching facility will provide the ultimate answer. I think someone above suggested sending her lab reports on to another facility. I believe that they actually need to examine your daughter first, but bringing in all previous lab work summarized on a sheet of paper will help speed the process up.Again, sorry you are going through this.Best Wishes.
    Anonymous 42,789 Replies Flag this Response
  • The antibody tests that were performed were: ana - positive (on two separate occasions but they did not report the titer or pattern - just that it was positive)dsDNA - negsm autoantibody - negribosomal p - negchromatin - negRNP - negSMRNP - negSCL 70 - negcentromere B - negSSA - negSSB - positive (5.7 and 6.0 - on two occasions)JO 1 - neg Her platelet count is always high. The day we did bloodwork while she had a fever her WBC was low, RDW was high, hematocrit was low, and glucose high. Things seem to even out with those counts when she does not have a fever. Thanks for all the help and encouragement!
    luther626 5 Replies Flag this Response
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  • I would be asking why no titer or pattern was determinedas this would give a direction to possiblly look
    TerryG 120 Replies Flag this Response
  • According to my book on lab tests, one of the things listed that can cause high platelets and low hematocrit is rheumatoid arthritis, but of course many other things can cause these, too. Not sure how to interpret the antibody tests- I think TerryG has a good point about needing the pattern and further testing for Ro, La, and SS-C antibodies which are subtypes of ANA. The book I have at hand is Mosby's Manual of Diagnostic and Laboratory tests, 2nd edition and it gives a complicated explanation of how Sjogren's syndrome with or without other autoimmune diseases can be assessed using SS-A and SS-B results. It's pretty complicated. It's really in the hands of the rheumatologists, as all tests need to be assessed by your daughter's doctors. I imagine that there are entire books on rheumatological tests and all their various patterns. I hope that either your current rheumatologist or a new one will be able to figure out the most appropriate diagnosis for your daughter. This sounds like it is going to be a complicated process. I would definitely keep a summary of all her labs handy and bring them to each new doctor seen. This will hopefully speed things up. Make sure they know you would like answers so you can begin treatment. Looking back over my years of undiagnosis/misdiagnosis, I think there were numerous doctors who were content to just summarize all my different symptoms without having a unifying diagnosis. I kind of had to keep pushing and going to new doctors to finally get an answer that explained everything. While your daughter may have multiple autoimmune diseases and not just one, they should be looking for actual diagnoses- one or more- and not just a laundry list of symptoms.I am so sorry you are going through this. I hope you get answers soon and will keep you in my thoughts.Best Wishes.
    Anonymous 42,789 Replies Flag this Response
  • The "Strange odor" coming from her skin? can you describe it? Also the sores in her mouth.
    TerryG 120 Replies Flag this Response
  • My daughter has had three surgeries on her skull. The incision was always closed and then covered with steri-strips. The odor that comes from her skin reminds of the smell of her skull healing. I don't know if it is the iodine or steri-strips or what but it definitely smells similar to that. As for the mouth sores, they don't look exactly like a typical canker sore or a spot where she might have bit her cheek. They are smaller and usually look swollen. Sometimes there can be as many as 10 in her mouth at a time. We went to see her pediatric gastro dr. today. She has lost 4 pounds since January. She only weighed 37 to begin with. She has definitely fallen off the growth chart. So he has scheduled her for a colonoscopy and endoscopy for Tuesday morning. He thinks that all her other symptoms, including the fever, weight loss, tummy aches, mouth sores - everything; are all connected and wants to take a look inside. She had an endoscopy last January and they did not find anything. Maybe this time will be different. Thank you everyone. I have been taking your advice. It helped tremendously to have copies of all her blood work today at her appointment. I will continue to research the things you are suggesting.
    luther626 5 Replies Flag this Response
  • Continue with the specialists and getting allopathic testing done, but consider also finding a holistic naturopath, Oriental Medical practitioner, NAET practitioner or homeopath to help your daughter. Sometimes a holistic approach can really help - especially with her digestion and failure to gain weight. Please ask around for referrals. I think this would really help her. Chinese herbal medicine can be very helpful for autoimmune dysfunction. Research NAET - Nambudripad Allergy Elimination Techniques. Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • I'm sorry but I have to ask. It may or may not be relevent,but why did she have surgery on her head?When was the first and last operation?
    TerryG 120 Replies Flag this Response
  • Check this possibilities. Some of them make sense with what you describe:http://wrongdiagnosis.com/f/flu/book-diseases-3c.htmAnd I suggest you to change of doctor. The best option is probably an hematologist or a specialist in infectious diseases, although it seems possible that there´s no infection in this case.God bless you.Best regards from Mexico.
    Anonymous 42,789 Replies Flag this Response
  • My daughter was born without a soft spot. At 3 months she needed to have one created. We were told that it would close by itself. It didn't. When she was 3, they went back in and put in bone paste which was supposed to "encourage" her bone to grow. That didn't work either. So when she was 4, they went back in, scaped out everything they did the previous year and put in a plastic plate and titanium mesh. It seems to me, not being of any medical background, that the inability of her skull to grow properly must somehow be related to her lack of growth. We have even considered the possibility of the plastic or titanium somehow effecting her system. Again, her neurosurgeon assured me thats impossible. There are just too many strange little things with her for me to believe they are all isolated problems. Hopefully these tests next week will shed some light on something. Thanks again for all the posts!
    luther626 5 Replies Flag this Response
  • Wow, your poor little one! Did they say WHY she was born without a soft spot? Seems to me this would be important and may point to some genetic issues. My feeling is if you feel that the titanium or mesh may be a factor, then I believe that could very much be so. I feel this is completely related to the surgeries. They could have "left" something inside during surgery, just enough to cause a mild enough infection or inflammation. Doctors don't like to admit that this happens, but it certainly does. A NAET practitioner could test her for titanium and see if she has any reaction...I still feel there is an allergic or hyperimmune response happening here. Have you considered a holistic approach to help get your daughter at least back on track with her eating and weight gain? Is your daughter taking a good quality children's PROBIOTIC? I also suggest digestive enzymes to help her digestion and improve her ability to digest her food properly. I have found homeopathy to work wonders on children. I use homeopathic remedies on both my kids - they are gentle and effective. You might want to research or find a good practitioner near you. You can also search online or get books from the library. Please consider this form of treatment! Best wishesDOM
    acuann 3,080 Replies Flag this Response
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