Replies to This Discussion

Permalink Reply by Kelly Nelsen on June 5, 2010 at 11:22pm

It's so hard having a child who's hurting but can't tell you exactly what's wrong! I feel for you. I'm glad you found this group, and I'm glad your baby girl is on the mend! (Samantha's a great name, by the way. We named our daughter that, too! :) )

Permalink Reply by edie pantelis on June 7, 2010 at 10:24am

Samatha's Parents, I am so pleased that you have the AVM site. When my daughter, she's 30, found out about her AVM, the Doc's said that she prob. has had it since pre/ or shortly after birth. we've now talked she's told me, she's had headaches all her life, remembers taking asprin, tylenol, advil through high school and middle school I didn't know and none of the drs ever thought anything about her headaches. I am glad for you to have found this out now and hope you will make the very best choices for her. Jamie had her AVM removed Jan. 21st she is back at work, driving, and being a fulltime mom. She was on some pretty strong pain killers, now she says a normal dose of tylenol or advil is good. The only things that bother her are the extra holes in her head she's having fun with it all now, zipperhead bumper sticker, I had brain surgery what's your excuse bumper sticker. Try to take it light. go to the survivors site. I cann't say I understand only that I have been blessed she's alive and well, I wish the same for you.

Permalink Reply by Jennifer Illg on June 16, 2010 at 11:37am

Welcome Samantha's mom! My son was 10 when we found his AVM so I can't exactly relate to your story but the heartbreak is the same for all of us.It's always tough to watch our children suffer.I wish I could say it gets easier but it doesn't.It sounds like Samanha is on the mend now and i'm greatful to hear that.Enjoy the easy moments when you can! Don't be afraid to speak up if you feel like she's not getting the care she needs and deserves.

Permalink Reply by erin lyn hurley on November 23, 2010 at 5:10pm

I'm glad that I found this site too. My son was 3 months when we found his AVM. He's 9 now. I'm glad now that we found it when he so young. Doctors respond a lot faster. You will recognize the clues to how she is,I promise. Every child is unique. The sounds they make differ just like the differences between hungry,wet,etc. I still remember my son's sounds. Bad pain was like a cross between a groan,purr,& a growl. His whole body would vibrate like a cat's purr. He probably picked it up from our cats. When he cried they would hang out around him and purr loudly. After each of his surgeries when he was waking up, he would arch up,open his eyes and give this sigh like he was completely emptying his lungs and then smile. I never saw him do this again until after his surgeries in Jan & Feb. I hope she's doing great. My prayers are with you.