We are AVM survivors, here for your support.
my baby diagnosed with AVM- ADVICE PLEASE
My 11 month old son was just diagnosed with an AVM. We noticed a bulge on the back of his head a month ago. The day after we noticed the bulge he had what appeared to be a scab and some bleeding in that area and it was still puffy. He had a CT to rule out a skull fracture which they said was normal. They called it a hematoma. It continued to grow over the next month so he just had an ultrasound over his head this week which they say is an AVM. I am especially concerned because we are having to wait a week to get an MRA to see how extensive the issue is. The doctors are referring us to Barrows Neuro Institue after that. I also think he is having absence seizures, which I didn't put together until now. Should we be waiting a week to get the test and then waiting to get scheduled with the specialist? I feel this is too long, but don't know if I'm being unreasonable. Please advise.
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Replies to This Discussion
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Permalink Reply by Gordon D on -
Hi Danyle
Welcome to the site. If it were me I'd contact the Mayo in scottdale for another opinion. I'm like you I don't like waiting when it comes to my kids. Keep asking question from everybody never stop.
Our though will be with you !
http://www.mayoclinic.org/scottsdale/
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Permalink Reply by Susan Troop (Lindsey's Mom) on -
Welcome to the site! You will find lots of support here. It is really hard on us parents, dealing with AVMs and our children. Take a deep breath, and take the time you need to get all the information you need from good doctors! This process is not a quick one. The waiting was the hardest part I think. There will be lots of tests and decisions to be made. Take good notes and get several opinions. There are lots of parents on this site who will help you navigate through it all. Our prayers are with you!
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Permalink Reply by Danyle on -
Gordon- Thank you for your suggestion to contact the Mayo Clinic. I am getting in contact with them as well as Barrows.
Gordon D said:Hi Danyle
Welcome to the site. If it were me I'd contact the Mayo in scottdale for another opinion. I'm like you I don't like waiting when it comes to my kids. Keep asking question from everybody never stop.
Our though will be with you !
http://www.mayoclinic.org/scottsdale/
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Permalink Reply by Danyle on
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Thank you for your advice. I guess I want all of the answers now, but I do need to remember it's a process and I don't want to rush into anything until we learn more and talk to more doctors. I've been doing research on the internet and writing down any questions, so I can at least feel I am doing something. I'm so glad to have found this site.
Susan Troop (Lindsey's Mom) said:Welcome to the site! You will find lots of support here. It is really hard on us parents, dealing with AVMs and our children. Take a deep breath, and take the time you need to get all the information you need from good doctors! This process is not a quick one. The waiting was the hardest part I think. There will be lots of tests and decisions to be made. Take good notes and get several opinions. There are lots of parents on this site who will help you navigate through it all. Our prayers are with you!
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Permalink Reply by Suzi Santamaria-Kono on -
My daughter had an embolization just after she turned 1. Her forehead had began to protrude so we had a CT scan. Once we had the MRI we found out that it was an AVM in the back of her head. I also felt like things weren't moving fast enough so I started making calls just asking what more could I do, was there anything I could do. The staff at Childrens Hospital in L.A. started calling for me also for the authorizations and such. Once I was at Childrens Hospital and she had an MRI there and saw a neurologist.. I got another appt. the following month with the specialist who would do the procedure. At that point I got lucky because once the specialist saw her lab/xray work, his office called me immediately to set up the embolization. They called on a Tuesday and the procedure was done on that Friday. We will go for an MRI soon. The doctor believed that she was doing well and it would be better for her to get the MRI done a year later instead of 6 months. Please keep in touch. I will be praying for your baby and your family. Things will work out. They will be okay.
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