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1684278 tn?1305221840

My daughter has an unknown autoimmune issue and needs a shunt for pseudo tumor cerebri

My 12 yr old has pseudo tumor cerebri but also an unknown autoimmune issue (the dr is leaning towards lupus but a test came back negative but she has alot of the symptoms), reflex neurovascular dystrophy (rnd), ehlers danlos syndrone mild type IV, chronic migraines, asthma.  She has lived most of this year with a headache everyday.  Her neurologist was hessitant about the shunt due to the autoimmune and said they wouldn't do one unless there was vision damage.  But after needing 13 lps to reduce pressure (like opening pressures of 44 1/2), 4  blood patches for leaks, hospitalizations for post spinal tap headaches and low pressure headaches, diamox dosage being so high that she went into metabolic acidosis and unable to go to school since Jan 24th.  they sent us for a second opinion.  The new doctor says a shunt is necessary for quality of life issues and so that she can return to a normal life and exercise to lose weight to manage the pseudo tumor and keep her rnd in remission.  The new doctor says there are different shunt materials and different placement for shunts.  Can anyone shine some light on this for me so I can decide which opinion to follow?????  THANK YOU AND GOD BLESS.
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Avatar universal
No, she needs to have her blood checked for the actual dna of the bacteria, unless it was done by one of the few labs using the Bowen Qribb test for lymes.  IGENEX labs is the prefferred lab, not Quest or Labcorp or even Mayo clinic.  Tell me what lab was used please.
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1684278 tn?1305221840
:( this was actually already done for her.....she isn't treated by regular doctors....she has actually two of the best doctors on the east coast...she is followed by doctors at Children's Hospital in Pittsburgh.  But thanks for your input but they did run this special test because they doubled checked the one her pediatricians did in the beginning.
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Avatar universal
There is a GREAT possibility that your daughter in fact has Lymes disease but was missdiagnosed.  The current testing for Lymes is terrible through Dr's offices and they miss 95 % of Lymes cases.   Contact ILADS ( www.ILADS.org) and find an ILADS dr near you.  Explain your daughters situation, her symptoms are lymes symptoms.  They will send her blood off to alab or labs that use the Q-Ribb test that is THE most accurate.  Standard doctors have no idea how to diagnose this or help.   let me know how it goes w/ her and hope god takes care of your daughter.  PS.  your option is to either have standard docs medicate her the rest of her life OR ILADS docs cure her.   Also, watch the movie "Under our Skin" and see if it matches your daughters conditions.  I bet you will be surprsed it does..
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