Hi, This is my first posting - Last Tuesday, my 6 yr old granddaughter (Grace) was dx with AVM by MRA/MRI - located in left parietel lobe and measures 2 in x 1 1/2 in- reason for test: early Sept Grace had stroke-like symptoms on right side of body (weakness, numbness) confused thoughts, inability to answer questions correctly - lasted approx 45 minutes followed by HA and very sleepy - saw Pediatrcian following day and ordered EEG and MRI - the next day experienced same sx but not as severe and took Grace to ER all labs good and Grace felt fine - EEG done few days later which was normal - saw Pediatric Neuro and Grace passed neuro exam - ordred MRI under sedation (she was unable to do it without) which is where we are at today - she is started on Tegretol at bedtime for 1 week then is to increase to 2 x day- schedule to meet with Neuro and Interventional Radiologist this Tuesday - my daughter was notified on Friday by the local Pediatrician that his understanding after talking to Neuro was that they did not think there would be treatment for now - understandably we were very upset by that news, but of course will wait to hear what specialists have to say on Tuesday - my daughter tried to get form done for homebound tutoring for Grace, but local Pediatrcian felt it is not needed and she should be attending school - this is all so new to us and we are being very protective of Grace and are concerned about her going to school under the care of a teacher, school nurse and guidance - does anyone else have someone as young as Grace that can help us understand and accept?
Hi Cynthia and welcome. You have come to a great site for advice. You may like to join this group as I’m sure you and them will have a lot in common.
Welcome to the family! You will find lots of people who can help you navigate this journey. I see someone has already directed you to the Parents Group. Each time you post there, a notification goes out to group members of your posting, and you won’t have to depend on people actually coming to the site to see your post. It is a great way to get help from other AVM parents/grandparents etc!
My daughter was 9 when she had her AVM bleed. We knew nothing of her AVM until that day. She had embolization and craniotomy Jan 2010. She is doing great! There are lots of positive stories on this site, to encourage you as you are faced with many decisions.
We didn’t take Lindsey out of school. She was restricted from participating in PE, and Recess however. I did have a meeting with the school nurse, and teacher to go over everything so they knew to notify me immediately if anything unusual happened. We were comfortable with this arrangement. We wanted to keep things as normal as possible for her, while we sorted everything out. As it turned out, she only missed 8 days of school for her surgery, so we didn’t even need homebound then.
I think you should wait until you have your meeting with your surgeon, before you make any decisions about school. This could be a long process for you. Your granddaughter will need a cerebral angiogram next, and that will give the surgeon much more information about what you are dealing with. You can only get so much information from an MRI/MRA. Every AVM is different, and there are many different opinions on how best to treat. For that reason, you should also plan on getting several other opinions from other surgeons, even in other states, even if you have great trust in the surgeon you see first.
I know this is a lot to take in right now, but try to deal with everything one step at a time, and not get too far ahead, trying to guess the future. It only causes extra worry and stress.
Hope this helps. Let me know if there are any questions that I can answer for you. We are sending many prayers your way!
Thank you Kim, Susan and Brett on your “welcome” and comments. The information you passed along was comforting. I am both anxious and nervous for the medical meeting on Tuesday.
Cynthia I have an avm in the occipital parietal area and though I am not a parent of someone I was diagnosed as a child I was 11. My experience with my daughter was with cancer and I know the fear, anxiety and stress going through your child (grandchild) being diagnosed with an illness. I wanted to send you my thoughts and prayers!