Help from a survivor for Parents of Children with AVM's

My Son has an AVM and has recently had steriotactic radiosurgery, the AVM is still at risk of bleeding as it takes upto 2 years to work, however the embolyisation procedure wasnt successful because the Malformation was too tangled and it would have been too dangerous to continue. The doctors also said that with the positioning of the AVM in the brain it was too risky to opperate so they decided to give him the radiosurgery. My Son has been quite emotional and often agressive and moody since the AVM and I was hoping someone could explain to me what he might be going through, how he might be feeling and whether or not he might be scared of everything that’s gone on. He doesn’t discuss the bleed or his treatment so I don’t fully understand how he’s feeling because I haven’t experienced what he has. I’m also taking him on holiday in a couple of months does any one have any suggestions of donts. Thankyou very much and I pray your all O.K. Xx

Hi Lauren. I read this post earlier today and still feel compelled to send you a note.

Our son (10) does not have an AVM but he does have ASD (Autism). He is often moody, emotional and recently more aggressive. I find the more information/language I give him about his "different kind of mind" the better he copes. We social story every change in our schedule and new experience so he has time to process it before he experiences it. He draws and cartoons to help express what he can't put into words. When he is talking I make sure to give him lots of time so he is not rushed. Above all we make sure that he knows we love him and his brain exactly as he is.

I am the one with a newly diagnosed, untreated AVM. It's a very emotional time for our entire family. Surprisingly he is very empathetic because he relates to having something wrong with his brain and very little control over it.

I'm not sure if this is helpful but I sincerely hope so.

Stephanie

Hello Lauren,
My name is caity and when I was 11years old I was diagnosed with an AVM. Being 11 this was very hard for me to even understand let alone cope with what my parents/doctors were telling me. I recall just wanting everything to go back to being the same, an just pretending that there was nothing wrong with me. My AVM had hemmorhaged but after the bleed I had to have Gamma Knife Radiation, and I was very scared that it wouldn’t make the AVM go away. One major thing that helped me was my neurosurgen he had pivately explained everything that was happening to me, and the procedure in simplar terms that a 11year old could understand. I’m not sure if that helps.
Caity

Thankyou, that does help, Did you have any side effects from the radiation? and was it sucessful? Ethan had it in October. x

Caity F. said:

Hello Lauren,
My name is caity and when I was 11years old I was diagnosed with an AVM. Being 11 this was very hard for me to even understand let alone cope with what my parents/doctors were telling me. I recall just wanting everything to go back to being the same, an just pretending that there was nothing wrong with me. My AVM had hemmorhaged but after the bleed I had to have Gamma Knife Radiation, and I was very scared that it wouldn't make the AVM go away. One major thing that helped me was my neurosurgen he had pivately explained everything that was happening to me, and the procedure in simplar terms that a 11year old could understand. I'm not sure if that helps.
Caity

Hi Lauren, my 11 year old daughter was diagnosed with an AVM back in August 2010. She was a very active child and this halted her activity alot. Due to the location, she had the stereostatic surgery at Johns Hopkins. She is on Keppra to control the seizures. No bleed just a seizure that led to the diagnosis. So much of this is still new to our family. She had the procedure in December and has been doing well. She is playing soccer again as long as she has no swelling or other side effects. We just take it one day at a time and try not to just sit around and wait for something bad to happen. After getting different answers from different doctors, we decided to go with what her primary neurosurgeon and neurologist said regarding activity. They work together at JH. I too, wonder what is going on in her mind. We talk about it when she wants to but she prefers to treat everyday normal. She is very aware of precautions she needs to take and what to do if she has a seizure. Is your son on any meds? Sometimes these cause mood changes. I hope this helps some. This site has been a real blessing to me. Sometimes I just sit and read. Blessings to you and your family...

Melissa

Thankyou very much, Ethan doesn’t take medication he was on something when he first had his radiosurgery however he’s not on anything at the minute. I think you’ve got to be careful of sitting around waiting for something bad to happen. I do try to get on as normal everyday and we do talk about it when Ethan wants to, but that’s not very often. I hope your daughter does well and makes a full recovery. Good Luck to you all. xxx

The only real major side affect that happened to me was my right foot contracted after gamma knife, and I had to have a foot repair. But my AVM was in a difficult place on my brain.

lauren myers said:

Thankyou, that does help, Did you have any side effects from the radiation? and was it sucessful? Ethan had it in October. x

Caity F. said:
Hello Lauren,
My name is caity and when I was 11years old I was diagnosed with an AVM. Being 11 this was very hard for me to even understand let alone cope with what my parents/doctors were telling me. I recall just wanting everything to go back to being the same, an just pretending that there was nothing wrong with me. My AVM had hemmorhaged but after the bleed I had to have Gamma Knife Radiation, and I was very scared that it wouldn’t make the AVM go away. One major thing that helped me was my neurosurgen he had pivately explained everything that was happening to me, and the procedure in simplar terms that a 11year old could understand. I’m not sure if that helps.
Caity

The only real major side affect that happened to me was my right foot contracted after gamma knife, and I had to have a foot repair. But my AVM was in a difficult place on my brain.

lauren myers said:

Thankyou, that does help, Did you have any side effects from the radiation? and was it sucessful? Ethan had it in October. x

Caity F. said:
Hello Lauren,
My name is caity and when I was 11years old I was diagnosed with an AVM. Being 11 this was very hard for me to even understand let alone cope with what my parents/doctors were telling me. I recall just wanting everything to go back to being the same, an just pretending that there was nothing wrong with me. My AVM had hemmorhaged but after the bleed I had to have Gamma Knife Radiation, and I was very scared that it wouldn’t make the AVM go away. One major thing that helped me was my neurosurgen he had pivately explained everything that was happening to me, and the procedure in simplar terms that a 11year old could understand. I’m not sure if that helps.
Caity

Hi Lauren!

I didn't have a child with an AVM, but I had my AVM right after my 24th birthday....I had craniotomy to fix this....after recovery I felt there wasn't anyone who understood what I just went through...My family was there but they couldn't relate to what was going on with me and I was dealing with all the changes of my body on my own...Therapists don't really know the emotional aspect of it because most have never had a bleed or needed to be in therapy for one...they only know what they see.....THis was very difficult for me...For me to finally deal with my emotions and feel like I was being understood I found a stroke survivor group that the local rehab facility hosts where I can go and talk to other survivors face to face and help them as much as they help me...maybe you could try to find a support group for him with kids his age hope this helps

XXXX

Lauren, Emotional and aggression and frustration are typical with brain injuries (even radiosurgery). Believe me, they sure have been with my daughter, who also is very impulsive and needs new things explained very simply -- in 2- to 3-part steps. I was told early in my daughter's recovery that growth spurts and puberty would be especially difficult times for her and for all of us as well (and I thought a normally developing child's teenage years were fun (just kidding) ). We struggle with my daughter's behavior on a daily basis. I have begged for help from every specialist known to man. Nobody seems capable of helping. I have been hit, hit, kicked, punched, you name it. At school, my daughter's behavior is beautiful. Then she comes home and falls apart -- usually at me or her sister.

The best thing I have learned to do with my daughter is spell out what we are doing. "We are going to store to get xxxx and yyy. We aren't getting anything for you or anything else. Can you handle that or do you prefer to stay in the car or at home?" ... "We aren't going to the park today. We will try to get outside in the yard so you can play a little." I have learned the hard way not to say anything I cannot guarantee 100 percent. Relatives who say things, then back off have made my life miserable because I am the one picking up the pieces. I would spell out to your son what you're going to do -- as much as you can. Social stories are good. Your son is 11 so you'll want some grown-up options for his rewards.

Hope that helps. Best wishes!!

Hi thankyou for that, Ethan can’t deal with the word no. His dad doesn’t see him anyomore either, so i know exacally what you mean about picking up the pieces behind relatives. Ethans 9. hope everything works out for you and your daughter. xxx

Tina White said:

Lauren, Emotional and aggression and frustration are typical with brain injuries (even radiosurgery). Believe me, they sure have been with my daughter, who also is very impulsive and needs new things explained very simply -- in 2- to 3-part steps. I was told early in my daughter's recovery that growth spurts and puberty would be especially difficult times for her and for all of us as well (and I thought a normally developing child's teenage years were fun (just kidding) ). We struggle with my daughter's behavior on a daily basis. I have begged for help from every specialist known to man. Nobody seems capable of helping. I have been hit, hit, kicked, punched, you name it. At school, my daughter's behavior is beautiful. Then she comes home and falls apart -- usually at me or her sister.

The best thing I have learned to do with my daughter is spell out what we are doing. "We are going to store to get xxxx and yyy. We aren't getting anything for you or anything else. Can you handle that or do you prefer to stay in the car or at home?" ... "We aren't going to the park today. We will try to get outside in the yard so you can play a little." I have learned the hard way not to say anything I cannot guarantee 100 percent. Relatives who say things, then back off have made my life miserable because I am the one picking up the pieces. I would spell out to your son what you're going to do -- as much as you can. Social stories are good. Your son is 11 so you'll want some grown-up options for his rewards.

Hope that helps. Best wishes!!