Kids and Teens with AVMs

More than anything I am looking to connect with families with teens whose lives have been impacted by an AVM rupture. My daughter is doing reasonably well, but academic problems are a major concern. She is in 11th grade and struggling on most tests. We are trying to prepare her for college admissions, something she very much wants, but I am really filled with doubt about her ability to manage college. We do have another year, and I would really love to connect with families who are on the same road, or who are a bit ahead of us. Katie’s hemorrhage was March 2007 and her gamma knife July 2007. She hasn’t experienced much reaction to the gamma knife at all yet. But problems for her: memory, easy tiring, right field vision deficit and slowed ability to process complex material. Everything is SUBTLE and school personnel either “get it” or just don’t see a problem. She had to drop out of Chemistry because of the teacher’s intransigence about allowing her to be treated differently for testing and time. She has an excellent IEP, wonderful support from an educational consultant etc. but that doesn’t stop people that don’t understand the long term implications of brain injury from making things even more difficult. For a long time I have wanted to establish a local support group in the WashingtonDC area, but haven’t received any bites, so I am thinking big picture now – maybe helping build a national association with a national conference of all AVM patients and their families. Anything to share our knowledge, our compassion for each other etc.

Hi,
I am a survivor not a family member and was in my late twenties when I ruptured but as for college, I wanted to let you know that I was able to return to college and still retain my 4.0 GPA. It was more difficult than before due to sometimes I lose train of thought and under stress, like tests, I feel like I can’t remember, eventually I do and have done fine but I will stress it was not easy and I did not try that for about 4 - 6 years post rupture. If Katie is not sure or still having problems I would let her wait until she is ready but let her decide, she is probably needing to do something to regain what she feels is control over her life and that is very strong feeling in us survivors. Just let her be sure she is ready and not pushing to hard to fast, that can cause set-backs.

Thanks Susan.

I am definitely not pushing her. I would be extremely content if she took time before going off to college, took some community college art courses (her interest area), did some interning etc.

She is committed however to the 4 year scence ASAP which is what is a bit concerning. I want her to feel good, relaxed and confident in her first year, not overwhelmed, stressed to the max and unable to success.

Anyway, thanks for your comments. Any more insights will be very welcome!!!

Hi Diane,
I can understand your concerns; my daughter is eight years old, in third grade, and had her bleed last year when she was seven in the middle of second grade. I have encountered stumbling blocks in the school system and, of course, general ignorance and lack of understanding as you mentioned as well. I too have really wanted other families to connect with whose children have had to go through this, though it is a rare group especially in very young children (my daughter’s avm was discovered at the age of two). It is stressful and easy to worry and lose a lot of sleep over. I do really agree with Liam, though, that your daughter’s youth and overall personal determination, not to mention the support from home, will carry her as far as she wants to go. My thoughts and prayers are with you,
Dulcey

Hi Diane,
Liam is right on, the success’s you have after a rupture can give you back some of what you feel you have lost an it gives you umph to feel like you can tackle the world again. Lots & Lots of TLC and be there for her when she needs a shoulder to cry on when it starts getting tough as I’m sure it will. And definitely give her lots of those hugs for us as well and let her know we are here for her as well. Take care.

Thank you everyone for your kind replies. I feel so welcome. I hope to receive lots of wonderful advice and support!!

hi. i had an avm when i was 11…im 12 now…i am the same is school grade wise…so i didnt et smarter or dumber

Hi I’m 15 now but I was 14 when my AVM bleed I’m thankful to the surgeron and Jesus Christ who saved my lifie

Hi Alyssa:

My daughter Katie was 15 when her AVM bled. She just started college. Her AVM was inoperable but it appears that the gamma knife procedure is doing its thing. She goes in for another MRI in October.

I am glad they were able to operate in your case and thankful that you made it thru! Nice to meet you.

Hi Diane,

Sorry that your daughter had to drop out of chemistry. What that teacher did at a minimum doesn’t sound right, and might even be against the law. If you have an IEP specifying special needs, I’m not sure he can ignore it. But that’s in the past.

I posted a long note here: http://www.avmsurvivors.org/forum/topics/just-lost-my-brother-to-a?page=1&commentId=1543517%3AComment%3A167949&x=1#1543517Comment167949

It lists our experiences with our son at college, and the help he received. Hopefully it can offer you some ideas for your daughter and college.

Best wishes,
Ron, KS

Hi nice to meet u too can I ask how old is ur dauther? How’s she doing? ?

Diane K said:

Hi Alyssa:
My daughter Katie was 15 when her AVM bled. She just started college. Her AVM was inoperable but it appears that the gamma knife procedure is doing its thing. She goes in for another MRI in October.

I am glad they were able to operate in your case and thankful that you made it thru! Nice to meet you.

Hi Diane,

My 19 year old daughter had her bleed in March 2009. She’s back at university starting this September, albeit only part time.

How is your project going? Have you made progress on a national organization?

Dear Nea’s Mom:

No national organization but it appears that this wonderful forum is serving our needs! Perhaps something national will eventually emerge.

Katie is attempting four courses at the 2 year college she is attending – since it is an art school and the demands are more related to completing projects than book work, we think it will be a good fit for her (although one course is art history – heavy memory!!). So far she is immensely enjoying the experience and the school seems to be right for her.

Alyssa:

Katie is now 18 years old. We are going for an MRI this month which will let us know exactly where she stands in terms of the AVM disappearing. (SHe had the gamma knife procedure at the Univ of Pittsburgh)

Hi Diane,
I am 19 and I found out about my AVM because of a stroke while I was at college 7 months ago. I took a while off of school due to the surgery and recovery process but I am back part-time now. I realize this is a year and a half after you posted, so I don’t know if you’ll ever see this, but it sounds like your daughter and I are actually around the same age and I would love to hear her story/have someone my age to talk to. I’m still really kind of shell shocked after everything, as I’m sure everyone here can identify with, so if you’re reading this please let me know.
Thanks so much and I really hope she’s doing better now!

Linnea:

Just letting you know that Katie is now signed up on here. Her name is Katherine Kramer. When we set her up we forgot to sign her on to any particular groups. Let me know if you can’t find her.

Linnea Madsen said:

Hi Diane,
I am 19 and I found out about my AVM because of a stroke while I was at college 7 months ago. I took a while off of school due to the surgery and recovery process but I am back part-time now. I realize this is a year and a half after you posted, so I don’t know if you’ll ever see this, but it sounds like your daughter and I are actually around the same age and I would love to hear her story/have someone my age to talk to. I’m still really kind of shell shocked after everything, as I’m sure everyone here can identify with, so if you’re reading this please let me know.
Thanks so much and I really hope she’s doing better now!

hi my name is sarah my son who is 17 was just dignosed with avm i had to take him out of the reg high school and put him in the self pace high school now he will graduated a half year early he had to give up basketball he has had a bleed is having siezures n stroke like activity we have just started r journey when did you find out your daughter had avm im in california