Discussions By Condition: I cannot get a diagnosis.

Help--my 14 yo daughter has lost her cognitive function after flu-like virus

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: kylie6
  • November 10, 2013
  • 01:02 AM

My now 15 yo. daughter developed a flu like illness in Sept (spring) last year- as did I. I went on Tami flu she was allergic to it. I got better very quickly where as she did not. She had a fever - light sensitivity- headache and started sleeping 23 hrs. a day. I rushed her to a hospital on approx. day 6 the dr ordered blood test and screened for glandular fever(mono). All negative blood tests were good. Her background is that she suffers from and intellectual disability and was only mildly affected. Her cognitive function was at around 80-70 %. Now she is non verbal, confused, dazed, hallucinating, mottled skin, red bags under her eyes, laughing uncontrollably, crying uncontrollably, showers up to 8 times a day --- ** EXTREMLY BAD HEADACHES** joint pains aggressive, light sensitive, noise sensitive, depressed, highly anxious, no eye contact, stiff neck. Head CT and MRI all clear. Blood tests seem to be ok - ESR was 11 - not high. Lumbar puncture done many months after initial virus showed a little elevated spinal fluid pressure - spinal fluid all clear. Neuro have seen her -- ruled out everything???? Rheumatologist - NOT INTERESTED !!! She seems to have pain flare ups so some days are a little better than others. All the Drs. are putting it down to her " autism" BUT she is a different person and doesn't know how to fake any symptoms. We are lost !! Peadiatricians are watching her but also not interested. She does not attend school anymore I look after her full time . The drs are pushing for psych drugs which we are trialling BUT it is much MORE than just psych !! If anyone can help with some feedback I would love to hear from you !!!! K

Reply Flag this Discussion

5 Replies:

  • I would suggest to fo with with medication, psychological counseling for such a long term depression.
    Amanda_Simon 3 Replies
    • November 15, 2013
    • 09:23 AM
    • 0
    Flag this Response
  • Have the dr.s considered Rhys Syndrome?
    Annalaska 3 Replies
    • November 29, 2013
    • 03:33 PM
    • 0
    Flag this Response
  • Get her tested for Lyme disease. She has a lot of the symptoms. Please note that the traditional tests used for Lyme disease at your regular MDs office are often not accurate. If you can afford and out-of-pocket Lyme test from Igenex, that is a better indicator. Also now this test which is probably cheaper. If she has Lyme, she'll need to see a Lyme Literate Doctor (LLMD). Hoping you find out what it is quickly.Contact Us - Clinical Pathology Laboratorieswww.cpllabs.com/contact-us.aspx‎ Clinical Pathology Laboratories, 9200 Wall Street Austin, TX 78754, Phone: (512) 339-1275, Fax: (512) 873 5069, Toll Free: (800) 595-1275.-- Understanding The CD 57 TestEVERYTHING YOU ALWAYS WANTED TO KNOW ABOUT THE CD57 TESTBy: GINGER SAVELY, RN, FNP-CFrom coast to coast, frustrations abound among patients andclinicians regarding the diagnosis of chronic Lyme disease.Misinformed health care providers in Texas and surrounding statesconsider the infection rare and non-endemic. They are inclined torule out Lyme disease based on the negative result of a laboratorytest that, unbeknownst to them, is highly insensitive. In the absenceof a reliable laboratory test or adequate experience in therecognition of the varied and complex presentations of the illness,most clinicians are ill-equipped to diagnose chronic Lyme disease.Many patients suffer needlessly for years, hopelessly lost in themaze of the health care system, looking for answers and enduring theskepticism of practitioners inexperienced with the disease’s signsand symptoms.What is needed is a better Lyme test or some other objective measureto persuade the practitioner to consider the diagnosis of chronicLyme disease. Enter the CD57 test! You may have heard the term “CD57″tossed around on chat groups, or your Lyme-literate health careprovider may have even explained the test to you in one of yourmoments of brain-fogged stupor. What is this number that sounds morelike a type of Heinz steak sauce than a lab test, and what in theworld does it have to do with Lyme disease?Let’s start by going back to basic high school biology. You mayremember that white blood cells (a.k.a. leukocytes) are thecomponents of blood that help the body fight infections and otherdiseases. White blood cells can be categorized as either granulocytesor mononuclear leukocytes. Mononuclear leukocytes are further sub-grouped into monocytes and lymphocytes.Lymphocytes, found in the blood, tissues and lymphoid organs, attackantigens (foreign proteins) in different ways. The main lymphocytesub-types are B-cells, T-cells and natural killer (NK) cells. B-cellsmake antibodies that are stimulated by infection or vaccination. T-cells and NK cells, on the other hand, are the cellular aggressors inthe immune system and are our main focus in the discussion thatfollows.Let’s pause a moment and introduce something you probably neverlearned about in high school biology class: CD markers. CD, whichstands for “cluster designation”, is a glycoprotein molecule on thecell surface that acts as an identifying marker. Think of comparingcells as comparing people. Humans are made up of innumerablesuperficial identifying characteristics (such as hair color, eyecolor, etc.) and so are cells. Cells probably have thousands ofdifferent identifying markers, or CDs, expressed on their surfaces,but 200 or so have been recognized and named so far.Each different marker (or CD) on a cell is named with a number, whichsignifies nothing more than the order in which the CD was discovered.On any given cell there are many different cluster designationmarkers (CDs), giving each cell its unique appearance and functionbut also linking certain cells by their similarities (like groupingall people with brown hair or all people with blue eyes). Cells thathave a certain kind of CD present on their surface are denoted as +for that CD type (e.g., a cell with CD57 markers on its surface isCD57+).NK cells have their own specific surface markers. The predominantmarker is CD56. The percentage of CD56+ NK cells is often measured inpatients with chronic diseases as a marker of immune status: thelower the CD56 level, the weaker the immune system. You may haveheard Chronic Fatigue Syndrome patients talk about their CD56 counts.A smaller population of NK cells are CD57+.A below-normal count has been associated with chronic Lyme disease bythe work of Drs. Raphael Stricker and Edward Winger. No one knows forsure why CD57+ NK cells are low in Lyme disease patients, but it isimportant to note that many disease states that are often confusedwith chronic Lyme (MS, systemic lupus, rheumatoid arthritis) are notassociated with low CD57+ NK counts. The good news is that for mostLyme patients the CD57+ NK level increases as treatment progressesand health is regained.CD57 markers can also be expressed on other kinds of cells, includingT-cells, so it is important to distinguish between CD57+ T-cells andCD57+ NK cells. Clinicians need to be aware that many testinglaboratories claiming to perform the CD57 test are actually lookingat CD57+ T-cells rather than CD57+ NK cells, which are the cells ofinterest in chronic Lyme disease.In order for a testing laboratory to measure the CD57+ NK level, itfirst measures the percentage of lymphocytes that are CD57+ NK cells.Then an absolute count is calculated by multiplying that percentageby the patient’s total lymphocyte count. The standard normal rangefor the absolute CD57 NK count is 60 to 360 cells per microliter ofblood. This wide range was established based upon test results ofhundreds of healthy patients. By these laboratory standards, a testresult below 60 cells per microliter would be considered below normaland therefore associated with chronic Lyme disease. However, a recentstudy of my Austin patients has led me to believe that 100 cells permicroliter is a more reliable threshold separating Lyme patients andhealthy controls.When Drs Stricker and Winger discovered that CD57+ NK cells are lowin chronic Lyme patients and tend to increase with patients’ clinicalimprovement, an opportunity arose for Lyme-literate practitioners toutilize a handy tool to aid in the diagnosis of chronic Lyme disease,to follow treatment progress, and to determine treatment endpoint.Just as AIDS patients have always held great store in their CD4 T-cell count, Lyme patients now have a fairly reliable marker of thestatus of their illness.It is important to remember that the CD57 result is just a number;far more important is the patient’s clinical status. An old professorof mine used to say, “treat the patient, not the lab test!” There isstill much we do not know about the CD57 marker and what otherfactors may lower or raise it. However, overall, the CD57+ NK countis a useful tool in diagnosing and treating chronic Lyme disease inmost patients. As a measure of immune status, it provides an indirectmeasure of bacterial load and severity of illness. Furthermore, in apatient who has a negative or indeterminate Lyme test but is highlysuspect for the disease, the clinician may utilize the CD57+ NK countas one more piece in the complex puzzle of a Lyme disease diagnosis.Postscript: If you would like your health care provider to order theCD57 NK test for you, your blood sample needs to be drawn into anEDTA tube (lavender top) on Monday through Thursday and sentimmediately to either LabCorp in Burlington, NC, or ClinicalPathology Laboratories (CPL) in Austin, TX. LabCorp and CPL are theonly two labs that perform this test properly. Quest does NOT. TheLabCorp test code is #505026 and is named HNK1 (CD57) Panel. The CPLtest code is #4886, CD57 for Lyme disease. The test is time-sensitiveand must be performed within 12 hours of collection, so blood shouldnot be drawn on a Friday or results may be inaccurate.
    Anonymous 42789 Replies
    • December 5, 2013
    • 03:51 AM
    • 0
    Flag this Response
  • Dear Kylie, First of all, on top of feeling physically miserable, you both must also be terrified. The amount of emotion that occurs during an undiagnosed condition with devastating effects is enough to crush the most stalwart of the salty. I'm not a mother and so I can only estimate the turmoil you must feel, but I do know all of the emotions are understandable and you are strong and brave for continuing the support and know that being a mom you have the strongest healing energy for.your child, but it will need the right approach. You are not alone and even though most people wont listen and fewer that seem to be able to help, the help and love is there.Second, treating your child with psych drugs may or may not help your child depending on various circumstances pre existent or concurrent with symptoms you describe in an effort to mitigate distress etc., however the rapidity of apply psych drugs to a condition, of which any student that could take an mcat could estimate on a superficial level, that has more to do with physiological rather than psychiatric disorder not just questionable, but irresponsible and in my opinion unethical. Your daughter should not be on a bevy of drugs until you really know what is wrong.3rd. Again I stress I am not a medical professional and do not offer any prescriptive advice. I do have some opinions seeing the litany of symptoms and having gone through something very similar in both terms of symptoms and mistreatment. Your do s provably arent runnimg the right tests because the get pressure to keep costs low. On top of that the kind of test you are most likely going to have to run are very specific and prone to false negatives even more than the reverse. What I would start questioning about is fungal components such as cryptococcus, aspergillus, malassezia furfur even candida. It could be something like that which tell you are very serious and all will effect your psyche considerably,any times before you recognize the body symptoms. There is more information in mycology and microbiology than you could ever know and so when go to sleuth online stay centered and calm and don't stray off into the conspiracysphere, just find the info that males sense to you and your daughters symptoms and then go offline. Alot of info out there has nothing to do with what you are going through, so stay focuseod. Also, there is probably a digestive issue, and probably nutritional malfunction occurring either simultaneously or precursor. So slowly cut out foods that could cause allergy or inflammation, I suggest sugars first and then glutans as theae things allow for yeaat overgrowths. I hated changing diet at beginning but now its great. Also any.medication and I would orobably ask your doc about nystatin and maybe fluconazole as really this sounds fungal related, probably candida overgrowth, it could be Lymes or it ciuld be any of alot of little known buggers. Fimd a doc who knows about that and you will have way better luck.Kylie hang in there and keep up the great Momness, we are pSending thoughts of healing you and your daughters way.Mycron
    mycron 1 Replies
    • December 9, 2013
    • 09:14 PM
    • 0
    Flag this Response
  • Hi. I just saw this. Did you get an answer? Have you looked into a syndrome that occurs usually after strep infection called PANDAS?
    Squirrelz 1 Replies
    • December 15, 2013
    • 02:03 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.