I am completely new to the AVM world. Google has been my best friend but also not!
When I was pregnant, I had my first routine sonogram. The techican found this blob of mass and so came the MRI’s and so on. At first, they said it was Dural Venous Thrombosis so I googled like crazy about of it. Throughout my pregnancy, it remain the same and did not grow in size so they just kept monitoring.
Plans were made about my delivering and what would happen afterwards. My baby stayed in the ICU even though everything seemed ok. They wanted to closely monitor him. He had an MRI a few hours after he was born and they then changed the diagnose to AVM. My husband and I are again at square 1 with all the information and are overwhelmed with all the terms.
Sorry, long post. I have close to million questions and would like you guys who habe experienced it to give me your thoughts and opinions.
Is there any parents here who has a child with AVM or anyone here who had it as baby?
What routine check ups did you have to do? I ask because they want my baby to have an MRI every 3 months and then sedate him once he starts to move alot which is probably the next go round. We are really worried about the MRIs but more so about sedating him all the time when he has one done since he is only 3 months.
Did any of you guys or your baby have a brain bleed as a baby? Did it in any way impact him/her?
What are good questions to ask the Neuro? He provided us all our information but I feel like we need to ask questions but don’t know what to ask. He said the AVM is in the frontal lobe, it does not appear to be deep in the brain but they are worried if there is a bleed, it will put pressure on his brain.
I will stop with the questions here. My baby is a happy, calm and wonderful baby so far. I am so grateful for him but at the same time, I am worried about his future.
Thank you in advance for reading, your answers and any input you can give me.
Welcome, its great that you found us, but too bad that there was a reason to. I can’t speak with experience of having an infant or child with an AVM, in my case it was me. We do have the @ParentsAndCarers Group that may be of further interest to you as well. No need to apologize for the questions! We all have had lots, and still do, an a lot of experience here for sure. There are some amazing Medical folks out there and have hear a fair bit about UCLA. Take Care, John.
Thank you, I will check it out. I’ve been reading through everyone’s experience also and that has given me some information and insight. Thank you for having me!
I had just turned 10 years old when I had my AVM rupture. Didn’t no I had one until the beginning started. I’d had headaches as a kid but figured they were just growing pains and allergies. It definitely changed my life. The biggest trick for kids dealing with an AVM is our body is growing at the time.
John, that is very true! I worry that it will hinder my son’s development if there is a bleed since he is only 3 months old. Maybe I am getting ahead of myself.
Thanks for sharing your history, that helps answer my husband’s question which was not asked. All the best to you.
My daughter’s avm was found at week 38+4. I had an mri done that eve (really early the next morning) which confirmed it. I had an emergency c/s at 38+5 because they were scared that I would go into labor and that a natural labor would cause too much pressure which could result in an aneurysm.
She was in the nicu for a week.
After she was released we had to go to the pediatrician I think it was 3-4 times a week for monitoring she had another MRI at 1 month old ( she stopped breathing when they put her under talk about terrifying)
At 4 months old she had a craniotomy at barrows.
Post surgery she went for an MRI at age 1,2, 4,6. At 6 they found a regeneration of the avm. At that time it was deemed too large to treat. And so we’ve been monitoring it with sometimes annual sometimes biannual mri.
Recently a dr proposed that she might be old enough to start radiation, so we’re in the process of exploring that right now.
It’s been a crazy ride.
Overall she developed on target with some slight delays.
She’s been in speech, & ot since age 2. Pt since 5/6.
Over the last few years she’s developed hemiparesis.
I think as a new mom the unknown was the most frightening.
Also,having a newborn who wasn’t allowed to cry because there was a risk of an aneurysm.
Once she had her surgery things really settled down and life was normal.
Do your research. We traveled from israel to the US to be treated.
Love your baby. If I’m being brutally honest, I was too scared to get attached, because I didn’t know if she would make it through the day.
It was so hard.
My thoughts are with you
if you want to talk I’m here.
I’m sorry to be sharing this ride with any parent! I’ve thought a hundred million times about how different this process would be if my child was a very young one vs a teen. Pros and cons for sure, so I try to focus on the pros Mostly, I shudder at the thought of what could have been. That this golf ball sized alien invader never ruptured in the 14 years before we discovered it seems an amazing blessing. Your challenges are different but every bit as difficult as mine. But for this moment I’m feeling optimistic enough to celebrate with you that our treatment decisions get to be proactive instead of the result of an emergent situation.
Thank you so much for sharing your experience and your daughters history with me. I know that my son’s will most likely be different. The unknown is scary, indeed.
From the beginning when we knew he had something, we said that we would work through it no matter what the outcome. I am afraid of losing him and hate to even think like that. I am embracing all of him, everyday!!
I hope the process for radiation goes well for your daughter. I will probably come to you for advice, questions and maybe even comfort in the future.
Thank you for your reply. You’re right, we all have different stories to tell about our child’s AVM but we can all relate in some way and put ourselves in each others shoes.
I am happy to hear that everything is going well with your child and hope it continues to be like that. All the best to you and your child!
Mostly, I shudder at the thought of what could have been. That this golf ball sized alien invader never ruptured in the 14 years before we discovered it seems an amazing blessing. Your challenges are different but every bit as difficult as mine. But for this moment I’m feeling optimistic enough to celebrate with you that our treatment decisions get to be proactive instead of the result of an emergent situation.