Pediatric Strokes and Blood disorders

[MilanMiller]

I need some help in understanding what is going on with my daughter.  Here is an outline to date:
(1) She was having headaches on a regular basis and dizzy spells.  We talked about it with her pediatrician during her last routine checkup.  Her pediatrician sent her out for an MRI.
(2)  MRI comes back abnormal and shows evidence of lesions in her cerebellum with possible calcification (which may indicate that it is an old stroke).  
(3)  We are sent to a neurologist who then orders a CT Scan (shows the same thing as the MRI) and and EEG which comes back normal.  We asked for an echocardiagram.  
(4)  The echocardiagram shows evidence of an intral atrial septal aneursym.  We have recently met with a pediatric cardiologist is verified that it is there, and we are scheduled to go back for a contrast ECHO to try and determine if there is also a PFO.
(5)  Her pediatrician ordered blood test.  Two so far have come back abnormal.  Her ANA test was positive (which I believe is a test for autoimmune disease) and her anticoagulation count is high.
(6)  The hemotolagist first suspected Lupus, so asked the pediatrician for more blood for more test.  Those came back normal for the lupus test, but we are now being sent to the Thrombosis Clinic at St. Jude.  
Her pediatrician would not tell me anything but that the doctors at St. Jude would explain it all to me.

Is there anyone that might could explain what is going on to me?  Can all of this be related?  What does it mean to test positive for ANA and have a high anticoagulation count?  Is it possible that there is a blood disorder going on?  Any help would be greatly appreciated.  The waiting is killing me.

[vega1318]

Don't be frustrated - doctors don't have all the answers but I'm sure they're trying their best to find one for you.   You might want to have your daughter seen by a pediatric neurologist in a major academic center.   But if she's really doing well and does not have any symptoms - these lesions may be completely silent.   And her headaches may be completely unrelated to them.  

[MilanMiller]

I am growing incrediably frustrated.  We went to the second neurologist for a second opinion - nothing.  First of all - the hospital that made the cd for the doctor to review lacked all the images.  It had only 3, when 450 were made.  This neurologist would not even begin to make a diagnosis without seeing the MRI and CT images himself.  But, since my daughter has no outwardly symptoms, he thinks everything is fine and that we are chasing our tail, wasting our time and money, going thru this process.  I just need some answers, some clarificiation, someone freaking person to tell me what caused the lesions, is there anything else going on that we should be concerned with, and whether or not we can go back to living our perfectly normal, boring lives.  This entire process and ordeal has been increadiably unsetteling and stressful.  The neurologist thinks her pediatrician may be overreacting and that all this is so completely unnessary.  We are just going where she sends us.  Why is it so freaking difficult to get answers?!?

[vega1318]

I found the correct spelling:  Lhermitte-Duclos.   Just a thought from your limited description.  

[MilanMiller]

I've never heard of that one.  They MRI and CT scan said there was no mass effect associated with the lesions, does this type of tumor have mass effect?  We have a second opnion with a different neruologist this week.  Hopefully he will give us some answers.  No one seems to be able to tell me anything and I am getting very frustrated.

[vega1318]

Not sure what they saw on the CT scan but calcifications in the cerebellum with headaches could sometimes be part of a syndrome called Lennox Dulcot (?sp) which can show up as these benign tumors in the cerebellum, usually calcified.   It can cause also cause headaches.   Her ANA may not be related at all but the headaches may be related to these lesions.