After our appointment at Sickkids yesterday, I am left feeling VERY frustrated. All we learned is that Leah has a High Flow AVM, and its VERY big and in a very RARE location that involves the femur. The doctors are stumped…telling us they have never seen this before…they have seen AVM’s before but never one like this. They need to take time to consult with doctors worldwide for advice. I keep thinking, this is a good thing - they are taking the time to research…but at the same time, makes me feel uneasy to have a doctor not know about your daughters problem.
On top of that we were referred to a cardiologist to monitor Leah’s heart…is this common? Do all AVM patients get referred to a cardiologist? I know AVM’s cause stain on the heart, but i thought not until later in life - not at 7 months!These are the thoughts/concerns we have right now…when i look at Leah all i feel is worry and guilt…its such a helpless feeling.
Hi no I have never been sent to seen a cardologist found my avm when I was 23. Maybe because she is only 7 months they are just double checking to make sure there is no strain on her heart. Better to be on the safe side. Also Im sorry to hear that your daughter has a rare avm that dr’s cant give you answers that like all of us you want. Your family and especially your daughter are in my prayers. Sorry I could be of more help.
Reading this post made me feel sick....I can't imagine your worry at this time. I am so sorry that you are dealing with this condition for your precious little girl.
I agree with you that it is huge positive that they are consulting doctors all over the world. I love it when doctors say, "we don't know". That is honest and they are being very careful. I think that "extremity AVM's" ( different in some ways than brain AVM's) do carry that risk of strain on the heart. If we remember that the blood that flows thru an AVM does not actually feed oxygen to any tissue, (because the blood flows from arteries directly into a vein drainage with NO capillary bed) I think it means that the heart has to circulate an extra flow of blood to the AVM AND to the other vessels that are actually carrying oxygen to tissue. And if her AVM is high flow, I'm sure this does affect the whole picture of her specific condition. Always remember that every single AVM is different.
RE: "HELPLESS FEELING"- My only thought to you is to put your energy into educating yourself. That is what I did. I spent hours on the computer getting the best layman's understanding of my son's AVM and possible treatments that I could. In doing that, I was ready for the harsh realities that the doctors would tell us (altho sometimes it didn't make it any easier to hear) and I could also ask the questions that needed to be asked.
Everyone is different but personally, knowledge for me is power and gave me a slight sense of control over a situation that seemed out of control at the time. Every doctor appt. I had my list of questions and if I needed 2 appointments with the same doctors to fully understand something, I just asked for them.
The waiting is the hardest part. Let the doctors do their research and consulting and then hear what they have to say. After that, you can look at sending your daugters records, MRI's, etc. all around the world to get second, third, fourth opinions. People do that often with AVM's because they are rare. Read up on alcohol embolizations being done in the states. Try to find the best extremity AVM doctors.
You are in that first stage of disbelief and fear that seems to come after diagnosis of this condition. Now you need to gather your knowledge and surround yourself with people who can support you and help you thru the stress that this will cause you. Soon, you will enter the "KICKING- BUTT- FIGHTING FOR YOUR CHILD -NO MATTER WHAT-I CAN DO THIS" phase and you will do this!
You'll be amazed at your strength. I am thinking of you and beautiful Leah. I bet she's a little fighter.
Hi Concerned Mom,
Like Joy, I felt bad after reading your post. On the other hand, I feel it's good to have a doctor admit when he or she doen't know what's going on as opposed to trying to do something and doing it incorrectly. I've read several stories over the past few years where patients were assured that they would be better after a surgery and then weren't. I pray there's a doctor out there who knows how to help Leah.
Take care,
Debbie
This breaks my heart to read this. I have a high output periphery AVM, and you're echoing what my mom went through when I was 8. My mom looking back wishes we were referred to a cardiologist when I was younger. I'm glad to hear your doctors are seeking out more advice, etc. My cardiologist, because he's a full system guy, has really been the pillar of my treatment and care. This isn't a bad thing, it's an additional member of the team that will only help your daughter.
You guys are in my thoughts.
AVMs can definitely cause heart problems in young children, and I do believe it is more common when they are younger, and especially a concern when the AVM is large. You can look up Abby's Mom on here and send her an email, because her daughter had serious heart issues from her AVM and the doctors caught it just in time. It is a good thing that they are going to monitor her heart.
It is also not uncommon for the doctors to consult about your daughter's AVM. They are pretty rare in children, and the doctors all seem to have different opinions about the same AVM, so that is a very good thing. It sure does freak you out as a parent, to know that doctors are consulting like that about your child. There is no part of this journey that is fun, as a parent, but hang on tight and try to take one day/one appointment at a time. Try not to let your mind go too far into the future, as it is hard enough to get through one day at a time. We are praying for you and your daughter, and are here to help in any way we can.
My daughter, Shannon, is 19 and we just discovered her AVM about 6 weeks ago. I don’t think it matters how old our children are, the worry and fear are still there. I, too, have the frustration of not knowing what they will do for this yet and the doctors are all consulting and taking her case to conferences due to it’s large size and coverage areas of her brain. It’s a grade 5. Everyone is correct thinking that it’s good they don’t just jump in without researching and getting as much feedback as possible before determining what course to take, even though we naturally want answers right now. I will surely be thinking of you and Leah often. xoxo
Hi Concerned Mom,
I just wanted to know how YOU are doing with all these things happening to your baby and your family. We are all here to support and pray for you. Although our children has different AVM, we as a parent are going thru the same emotions. Please, if you are still at SickKids, let me know…I work although I’m on a different department, I can always pop in and say hi to you and your baby. please email me here or at ■■■■■■■■■■■■■■■■■■… I am hoping that there is nothing wrong with her heart…My son’s heart had been checked by a doctor too but your child is younger than mine so that must be why you are being referred to a cardiologist to keep her safe.
Keep in touch. Take care.