Children - Special Needs Community
740 Members
233915 tn?1218813127

Pediatric Strokes and Blood disorders

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.
1 Responses
233915 tn?1218813127
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?!?
Have an Answer?
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Is a gluten-free diet right for you?
We answer your top questions about the flu vaccine.
Learn which over-the-counter medicines are safe for you and your baby
Yummy eats that will keep your child healthy and happy
Healing home remedies for common ailments