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AVM Survivors Network

Anyone that has a toddler with an AVM/AVF?


#1

Hi I am a Mom of a 2 year old son with an AVF located in his neck, near his C7. As we are on "wait and monitor" orders by Dr. Spetzler at Barrow, I can't help but have growing anxieties about the AVF. I have had anxiety in the past, but this is so hard on me as a Mom. I have several questions and need to connect with other's in a similar situation.

Anyone notice symptoms due to the AVM/AVF?

Thank you,
Dionne


#2

Hello Dionne,

It is really, really tough knowing our kids have an uncertain medical future. My nine month old has avms in his leg with limb enlargement and a suspected avm near his ear. Recent MRIs show additional flow, but it is not clear where the lesion is located. He pulls on that ear, but he does not seem to be in any pain. The affected parts are warmer and he has birthmarks over the areas. We monitor his cardiac output for greater heart failure and we meet with ortho for limb xrays and measurements. We are also on a "wait and monitor" plan. We are going for a second opinion with Dr. Burrows in Milwaukee, but I'm hoping she has the same recommendations. I trust our Chicago team, but it never hurts to have more specialists weigh in with these cases.
With everything, I try to focus on how he is doing daily. He is happy, growing, and curious about the world. Honestly, that is everything a mom can hope for in a kid. He doesn't seem bothered by any symptoms related to his condition. We are meeting with early intervention next week to start work on his gross motor development and get this little guy walking!
Does your son have any noticeable symptoms? When my kid was first born and we started down this rabbit hole, I just wanted it "fixed". The more I learn, the more I realize that waiting (if possible) truly is the best approach. My son will need embolization at some point, but the more we can push that off, the better. The procedure is typically a series of embolizations over months or years, and he will be better able to handle that when he is older. I could talk FOREVER about this, but I want you to know I understand. It's tough. Some days are okay, and then you remember there could be a serious problem in your son's future. I'm at my best when I stay grounded and enjoy playing with my kid and his little big leg. One day something worse may happen and we will watch and deal with it then.
-Nicole


#3

Hello Dionne! I don't have a toddler with this problem but my baby (he is almost 30) does have several Venous Malformations throughout his body. Right now we are dealing with chronic anemia due to several VM's in his colon. He is scheduled to have surgery on the 17th of this month. I so understand the anxieties. I am anxious a lot with my son. My best advice to you is to be as informed as possible and have frequent checkups with his doctor to monitor the AVF. My son was not diagnosed until he was in his 20's but pain and swelling were the initial symptoms he had and now the chronic anemia. Does your doctor do any blood tests? That would be a priority to me! Good luck and I pray for you and your son.


#4

Thank you wandawoman10 for sharing your story, advice and prayer. It all helps. Sending prayers that your son has a successful surgery.


#5

Hi Nicole. Thank you for your time and thoughts. It all helps. I try and focus on the positive things. The doctor said to schedule a MRI/MRA after his 3rd Birthday, so lately I have had anxiety because people are mentioning that he's 2 1/2 and alike. I have the anxiety triggers and am emotional lately. I am trying to differentiate between my fears and gut feeling concerns, because lately I have noticed changes. He has been really tired lately along with a lot of tantrums. Could say it is the "terrible two's" or because he had started developmental preschool. I don't know if these changes are related to his AVF or not. Such a guessing game when the little ones can't talk! Another thing I am concerned about is the "whooshing" sound I hear when I lay my head on him. I have only listened to his back and have heard it. Tonight I heard the same whoosh, but when listening closer to his AVF, it is a loud whimper sound. almost like a dog whimpering. I am making an appointment with the doctor's and will probably get another MRI soon. UGH.
It does relieve me reading other's stories that are similar to ours. Does your son have/had any symptoms?


#6

Hi Dionne,
my daughter is 18 months old and was diagnosed with an AVM in her spine about 2 weeks ago. I understand your anxieties, as it is driving me insane as well! We haven't heard from the doctors what to do, so all the medical procedures you all talk about frightens me. We are waiting for our pediatrician to refer us to a doctor that can help. Charlotte also seems to be very irritable and cries a lot, but also I don't know whether it is the terrible 2's starting.
All of the best to you and your son!


#7

The sound you are talking about seems like a bruit which is a common finding with AVMs. The blood makes noise as it swishes past the short circuit. The main symptom that Rob has is the pulsating of his leg and ear at times plus those areas are warm to the touch...oh, and his affected limb is a lot wider and a bit longer. It's a bummer. No one can tell me how bad it is going to get, will he be in pain, etc. Blerg. I think the MRI/MRAs are a good thing to keep tabs on the lesion. Rob has had two so far, and will not need another for a bit (hopefully). We do go for regular (spaced out to every three months now) echos and cardio meetings to check on his heart strain. I would recommend that your son receives monitoring to ensure the avm is not causing high output enlargement or strain. If you notice him getting sweaty with minimal work or is VERY fatigued or is losing weight, I'd mention it to your doctor. But of course you would do that anyhow :). I'm sure he is just going through a spurt in development. One of our specialists told us that if his AVM is causing him pain- we will know. I'm more worried about how this will impact his ability to move. I really want to ensure he has as normal a childhood as possible. These little guys don't know any different though, and we owe it to ourselves to realize that we are doing an awesome job raising boys.


#8

Hi Claudette. My apologies for the delay replying. All the best to you and your daughter as well.


#9

Hi Dionne,I know it’s been s few years since your post.How did everything go?
My now 4 1/2 yr old son was born with DAVF.Multiple.We saw Dr.Albuquerque at Barrow when he was 1.He did an embolization.We have since moved my sons care to Stanford Medical in Ca.Hes received 3 more embolizations and a craniotomy.A recent angio revealed new DAVF’s after being @cured"last year.So scary,I know!