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.

[PlateletGal]

I can understand your frustration. I would recommend speaking with a Pathologist.... I know that usually the Pathologist physicians' are very good at interpreting lab results and assisting patients'.

[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?!?

[PlateletGal]

You might want to consider contacting the hematologist that first suspected lupus and see if he/she can help you. I would also be concerned.

Good luck with all of this.

[MilanMiller]

September 19th.  I'm just ready for someone to tell me what is going on, and how we are going to fix it, and get the medication started.  

[PlateletGal]

I can understand how you are feeling. When is your appointment with St. Jude ?

[MilanMiller]

Thanks.  I've researched that one and I guess we won't know for sure until we go to St. Jude.  It's just incrediably frustrating waiting and worrying about what's going on.  I'm afraid if she's not being treated with medication to correct the coagulation problem, she could have another stroke.  And even though she suffered no neurological problems from this "old" one, we may not be so lucky next time.  But, I know that she may also not ever have another one.  It just scares me.

[PlateletGal]

I'm sorry to hear about your daughter. I do know there are autoimmune conditions such as Antiphospholipid Antibody Syndrome, that can cause strokes. You might want to do some research online.

Best of luck to you & your daughter.