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MIKE B 03-25-2014 09:20 PM

Venous Malformation and self esteem

My 1.5 year old daughter has a venous malformation in her left hand and arm. It has gotten more noticable over the past few months, and she is starting to notice the difference in her two hands. Does anyone have any advice/tips on how to talk to her about it when she she begins to ask questions? Also, she has a 3 year old sister who to this point has never really mentioned her sister's hand. Should we wait for her to ask us? We are obviously not ashamed of our daughter's condition, but should we be pointing it out to her and her sister, or she we let them come to us? Also, any good book recommendations for building self esteem in children with these types of conditions?

Mike B

fiafo 04-02-2014 11:21 PM

Hi, I'm a 34 year old woman with a cavernous venous malformation on my neck and jaw. From my point if view of being a young child growing up with the condition, and now being a mum of a 2 year old with a PWS, I would advise to wait for the questions, and when they come answer them truthfully, and give as much detail as required. I think children can cope with the truth. I would also keep your approach quite lighthearted and casual.
My parents always talked about my VM openly but I feel they shielded me from the medical knowledge behind the condition.. Or maybe they just didn't know themselves. I had 'extra veins'. I did all my own research when I grew up. I feel that a parent should know as much as they can from a medical perspective, so they can answer questions, because as the child grows older the VM may change and the child may want to know what's going on and why and what to expect . Also I think a realistic approach to potential treatments is important ., no false hopes and sweeping statements like 'this op will cure you' because kids believe everything you tell them and it mightn't go to plan. So realistic expectations I would definitely advise. But confidence wise, children are amazing at just accepting what's there.. Parents can be the ones more affected! Hope this helps and good luck.

MIKE B 04-04-2014 05:58 PM

Thanks so much for the response. It was very helpful.

How is your 2 year old doing? Has he/she begun to ask any querstions about the PWS?

Mike B

fiafo 04-17-2014 11:08 PM

Hi mike
My just turned 3 year old has yet to ask any questions. Her older sibling asked what was on her face a few times last year and I just replied it was a birthmark and some people are born with them and some are not. That seemed to be suffice as there have been no more questions since !
Its true to say that as time goes on the less you notice someone's birthmark.. My mum used to say that to me and I never believed her. With my daughter I was very focused on her PWS when she was baby, but now I hardly notice it even though it hasn't faded.
She got her first round of laser last month and it has been a deeper colour ever since, and a couple of not so nice comments were made by other children at nursery.. I fought not to become upset, but my daughter seemed baffled as to what they were talking about!
If you ever have any questions about venous malformations I would be glad to help if I can.. This is my email address as I only log on to this site every so often.
Take care , Niamh

MIKE B 04-28-2014 06:31 PM

Thanks so much Niamh. Did you ever recieve treatment for your VM? If so what kind? Have you had success?

Mike B

Kelly555 05-22-2014 04:35 AM

Hi mike - I just stumbled across this page. I have a venous malformation on my lip. It's very noticeable. Growing up, I had countless number of doctors and dentists ask me what it was and I never knew, so I just said it was a birthmark. It is hard growing up with something so noticeable on your face. I agree the best approach is to just explain its a birthmark. If she is bothered by it later in life, you may want to look into whether it can be treated. Mine didn't start bothering me until recently. Just this week I began treatment for it. Fingers crossed it works.

MIKE B 06-03-2014 08:08 PM

Thanks Kelly, good luck with your treatment.

jasonkeller 12-01-2014 10:42 AM

I would recommend you waiting a little bit. When she grow up a little bit, head for some treatment.

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