My 2 year old daughter was recently diagnosed with an AVM on her left cheek and through her jaw and upper neck. She was born with discoloration on her cheek, but then so was her older sister (hers went away before she turned 2) and I have a very noticeable birthmark with no related health issues. We always assumed it was just a birthmark until her molars started coming in and she began to bleed frequently once it broke through her gums. A mass started growing in the back of her mouth (about where wisdom teeth come in) and has continued to grow since this began roughly 4 months ago. My little girl, who loves to eat, has since experienced pain while eating and has turned down food due to the discomfort of chewing. We have been able to adjust her diet but she still bleeds at night (maybe she grinds her teeth?) or whenever she hits her face/head or bites down on something particularly hard. Those of you with toddlers know how hard it is to keep them from putting things into their mouth. We got around 7 different diagnoses before finally arriving at AVM thanks to the Vascular Anomalies Clinic at Primary Children’s Hospital. She has undergone a CT scan, MRI, and an ultrasound. Her next appointment is in August for an angiogram with arterio sclerotherapy? HAs anyone else gone through a similar situation? I have been trying to contact her doctor for help with some questions but have yet to hear back. He mentioned the procedure would be around 4 hours with another 4 that she would be unable to move. As a 2 year old, I know that is not something she would do willingly so I would like to know how they plan on keeping her immobile for 4 hours post-op? Also, we are trying to figure out how the procedure may affect her in the days following- will she need to stay at the hospital, will she be able to walk, will she be able to eat or keep anything down? With both the CT scan and the MRI she had a really rough time coming out of the anesthesia but the oral Verset helped some. For the MRI which was a lot quicker than the angiogram will be, it took her nearly 3 hours after being released to be able to walk again. Also, we live ~5 hours from the hospital so going home is not an option. I guess I just would love to hear from people who have been through similar situations and any advice would be greatly appreciated…
-S
Hey,
I’m sorry to hear about your daughter but I hope the doctors will be able to do something to help. I am not familiar with operations on such tiny people but I am sure we have people here who had an op at a very early age, or other parents.
We do have a @ParentsAndCarers group. There are also very few @Facial AVM people here. I think your daughter’s AVM will be most like a facial AVM.
For myself, I can tell you that my AVM was in the back of my head, in the Dura mater layer and was fixed by just an embolization, like the plan for your daughter. It’s difficult to know how successful your embolization will be but I am sure that, despite the fact I don’t feel 100%, I’m much better off having had the embolization than before.
Regards the 4 hours procedure and 4 hours lie down, if her op is anything like mine, they’ll do the embolization through her groin and the 4 hours lie down is to let the groin heal effectively. I’d expect sedating your daughter may be appropriate during that lie down.
Post op, I was in hospital for a couple of days and then went home. I felt imperfect for 1-3 weeks. My AVM was quite high volume flow and had been affecting my head badly in the run up to the op, so I had a big swing in how my blood flowed round my brain. I felt bruised and headachy after the operation. I’m not the bravest person and I got through just fine.
I hope others will pitch in. Anything you want to ask, just ask.
Very best wishes
Richard
Thank you for your reply, I appreciate you taking the time to talk to me. For the last few weeks since the diagnoses I have felt like I needed some answers but not knowing anyone who has been through this situation I felt like no one would really understand. I am so grateful that I found this page.
You’re completely welcome! In my case, I’ve found my AVM aged 50, so it is easy for me to deal with it being “me” not my son and equally easier to justify having got to 50 pretty much unscathed. Having said that, I went into proper meltdown when I got my diagnosis. So to have all that happen to your 2-year-old is a bigger deal.
I hope we can find some people for you who’ve been through similar.
What I will say is that “discovery” is a frightening stage and you worry about everything. I hope that as you learn more and (to be honest) come to terms with the situation, because it is a coming-to-terms with it, you’ll settle better.
I think embolization is a middle-impact thing. Not as invasive as open surgery, for example. If it can be done that way, if it we’re my child, I’d be ok with that. If I we’re to worry about your situation, it would be that “facial” AVMs seem to be really difficult things to fix fully or properly so it could be a thing you end up fighting for a long time. But I’m no doctor and you’ll need to go through these sort of questions with the doctor for how good an outcome they’re expecting to get.
You’re in one of the toughest positions as a parent. But we are here to help and support.
Anything you need to ask, just ask. though note that we dont have doctors here, just people who’ve been through similar and learnt what it all means and how we coped ourselves.
Lots of love,
Richard