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Please help a child with undiagnosed systems

Posted In: Medical Stories 6 Replies
  • Posted By: Petalblush
  • February 19, 2008
  • 09:48 PM

Please, can anyone help. My grandchild has been suffering from cyclic high fevers since the first month of her life and is now six years old. Since the first month, in the first week of the month she has presented with very high fevers, (often in the high 104 range) along with a host of other symtoms including:

severe lethary, projectile vomiting, severe malaise, pain with movement, some times neck appears to be stiff (doctors have thought meningitis and tested), elevated white count (however testing for infections such as UTI, ear, throat show negative), trace blood in urine, sed rates below normal, IGA deficiency found, T3 and T4 anomalies, severe pallor, weakness, complains of head and stomach hurting.

If anyone has any ideas, please help. Some blood work presented as indicators for cancer, however when taken to Dornbeckers, was not diagnosed.

She is fine during times when these symptoms are not occuring. Active, happy, normal growth.

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6 Replies:

  • My Son Suffered From Some Of The Same Symptoms Starting At That Age On.. We Were At A Childrens Hsopital In Texas When They Couldnt Figure Out Was Wrong With Him They Did A Bone Marrow Biopsy To Check For Leukemia As He Showed Signs Of It .. What They Found Was Juvenile Rhuemotoid Arthritis They Out Him On A High Dose Ibuprofen And We Havent Really Had A Problem With The Severe Symptoms As We Did Before I Would Discss With Your Doctor About Having A Bone Marrow Bioposy Done They Are Painful For The Child But It Saved My Sons Life As He Was Slippin Away And They Didnt Have A Clue What Was Causing It... Also See About Seein A Genetist There May Be Something Genetict The Doctors Are Missing... I Have Been In Your Shoes And Asking The Doctors Wont Hurt.. But Research Everything As I Learned When It Came To My Son The Doctors Wouldnt Listen To Me Until I Got Educated On Everything They Were Saying.. The More You Know As A Parent The Better The Chances Are The Doc Will Be More Apt To Listen..
    Angels031977 2 Replies Flag this Response
  • AngelsThank you so very much for taking time to respond to my plea. This may be very helpful, as my grandchild has often, during these periods of fever, reacted as if movement was painful, and at times also touching. Doctors have considered meningitis more than once, due to stiffness and reactions that indicated pain upon movement, however testing did not indicate it. Some of her blood work was indicative on cancer, however, again testing did not verify this. You are so right about doctors not really listening, especially when they dont have answers, as is difficult as between these fever times, she appears as any normal 6 year-old. Again, your response is so appreciated.
    Petalblush 6 Replies Flag this Response
  • Blaze Thank you also for taking the time to respond. I will do research on your suggestions.
    Petalblush 6 Replies Flag this Response
  • I don't think a newborn would have lyme. Don't even consider it. It could be genetics or a reaction to the shots that they give them. I'm sorry for her suffering and hope you can find a doctor to help.
    Monsterlove 2921 Replies Flag this Response
  • Petal you are so very welcome...My son is now 6 years as wel and I have been in your shoes ..the same thing with my son he many tests to check for cancer as well as menegitis so i know how you feel so just remember to research and be very determined to have this testin done as the docmay put up a fight with it... believe me i know .... please keep me posted k
    Angels031977 2 Replies Flag this Response
  • My son had similar symptoms. During his first three years he would get a high fever every six weeks like clockwork. His temp would range from 103.5-106 for 3-6 days. He didn't seem to have other symptoms, but it was hard to tell because he also had chronic reflux - cried and vomited constantly for the first two years. :-( He may well have had headaches, but even now at age 9 he is not able to tell when he has a headache or when he's hungry, probably because his head and tummy always feel awful.Vaccinations made him ill. Teething made him ill. He had terrible rebound headaches from the ibuprofen he was given during the high fever weeks, and would spend days after the fever broke banging his head on things to make the "wax in his head" go away. He had what appeared to be Lyme Disease when he was 8, and ever since has complained that his legs are tired and achey. The Lyme may actually have been strep, because he had recurring strep infections from age 7-9. I'm interested by the juvenile RA suggestion; RA runs in my family and I was just diagnosed myself a few weeks ago. The pediatrician has suggested it several times regarding my son, but the blood test is always negative. Turns out mine is too, and my mother's as well. 20% of people with RA have negative bloodwork.Please consider a few other things that have come to light with my child: Food allergies: An egg allergy may explain my child's unusual reaction to immunizations, many of which are grown inside chicken eggs. It may explain the cyclical nature of your grandchild's health crises, at least for the first 3 years.P.A.N.D.A.S. : This is a lot less rare than was believed a few years ago. Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep is a strep infection that is not always associated with the sore throat and headache. It is internal and you may see no symptoms beyond a sudden change in behavior or health. My son has been diagnosed with and treated for PANDAS three times in 2 1/2 years. The test for PANDAS is a blood test for strep, not a throat swab.Best of luck; it is so frustrating when you can't help a child in distress.
    Anonymous 42789 Replies Flag this Response
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