tu4four Posted December 5, 2013 Report Share Posted December 5, 2013 MRI was fine, clear. Lumbar puncture showed clear fluid, nothing remarkable. Protein, glucose, etc all within normal limits. I had repeatedly asked him and everyone I came into contact with to test for o bands, autoimmune markers. Neurologist said today that they only check I bands, etc when protein is high. I am concerned about that. BUT...he said that her pressure was VERY high... The opening pressure of spinal fluid. It should have been, according to him. 20, 22 tops, and hers was 38. He said this can really cause vision loss, and they are trying to get us in to see a neuro-opthomalogist. Said we should treat her with diamox to reduce fluid....possibly topamax, which he said might have the added benefit of calming her mood. He said we will have to recheck it with another lumbar puncture in about 3 months. He said there was no encephilitis. My concern.....he did not have any idea about a cause. Hmmm.... I'vebeen thinking maybe parasites? Any ideas? Link to comment Share on other sites More sharing options...
JoyBop Posted December 5, 2013 Report Share Posted December 5, 2013 (edited) First about the MRI the doctors at the PANDAS conference said that it takes a very specialized radiologist trained to measure the volume of the basal ganglia. You won't necessarily find inflammation by your average radiologist since visually there is almost no difference in a few increased percentages. They showed us a fee slides of normal brain and inflamed and they specifically said only those specifically trained to measure these increases would be able to find it. Its great however that there were no other abnormalities. Regarding spinal fluid pressure, was your child sedated? I've heard that the pressure is increased when they are sedated. I've also heard that the pressure can be much, much higher and still be normal. (I think I recall the normal range can now be up to 36 on average but threshold can be even higher, closer to adults pressure than previously expected) I would definitely pursue a second opinion and I would also want those o bands tested. Ask qannie about her experience with this as I believe he child was found to have the I band without the protein abnormality. Edited December 5, 2013 by joybop Link to comment Share on other sites More sharing options...
qannie47 Posted December 6, 2013 Report Share Posted December 6, 2013 HUH???? My son did not have high protein levels and they found the O bands....I am confused....I thought this was a routine part of testing of the spinal fluid??? My ds's protein levels were fine....yet they found the O bands....they do a blood serum at the same time looking for O bands...but why not test for them...they already have the fluid? Something is off.. Link to comment Share on other sites More sharing options...
qannie47 Posted December 6, 2013 Report Share Posted December 6, 2013 when did they do the LP? it takes 3-4 weeks for those results to come back...they give you a preliminary opinion, but those tests take weeks to come back...my sons fluid looked great as well at first glance....then they found the o bands. Link to comment Share on other sites More sharing options...
tu4four Posted December 6, 2013 Author Report Share Posted December 6, 2013 HUH???? My son did not have high protein levels and they found the O bands....I am confused....I thought this was a routine part of testing of the spinal fluid??? My ds's protein levels were fine....yet they found the O bands....they do a blood serum at the same time looking for O bands...but why not test for them...they already have the fluid? Something is off.. I agree that something is off. Especially since every time I talked to anyone....the nurses, the doctor who was to do the LP, the neuro, the scheduling people, I told them that I wanted to be sure that we were testing for this. This is the initial report, but the only other two parts that he is waiting for are the neurotransmitter levels and testing for NMDA. The good part of this, I guess, is that she HAS to have another LP in three months, and I might as well take her to a PANDAS neuro.....guess I was wrong about that when I said that a mainstream neuro couldn't argue with the results of the lumbar puncture....he could just not look at everything. I am tired. I am sick. And, just like everybody else, I am so frustrated with having to constantly play detective, on top of being called stupid and other lovely names by now 2 of my children. I want them to be well. I want to have a life with them. Link to comment Share on other sites More sharing options...
trintiybella Posted December 6, 2013 Report Share Posted December 6, 2013 Tu4four. Don't be hard on yourself! Your amazing what you take care of and accomplish! Your doing a great job!!! It is NOT easy, so don't go there!!! We are all there for you!!!! Link to comment Share on other sites More sharing options...
qannie47 Posted December 9, 2013 Report Share Posted December 9, 2013 They check neurotransmitter levels in LP? I must re check my results paper work. Link to comment Share on other sites More sharing options...
tu4four Posted December 9, 2013 Author Report Share Posted December 9, 2013 Apparently it's not a standard, but it can be done. Our neuro said the results of that part will be back a month after the test. Link to comment Share on other sites More sharing options...
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