son with venous malformation

[kirstyp1985]

hi all
first of all i will introduce my self my name is kirsty i am from the united kingdom and i have a 6 month old son with a vm of his left posterior(back) thigh, we noticed the lump a week after he was born after various appointments and an mri and biopsey we have been told he has a vm the thing is when ever i ask questions regarding it i just get told they dont know or we will cross that bridge when we come to it.

i am just after a bit more info regarding this and just wondered if any of you could give me some i also would like to know if any of your children have different limb lengths with theirs nd if they had problems walking ???

also it goes into his muscle aswell
kirsty

[J.Ds dad]

Hi Kirsty

We are also in the UK and have a daughter who is 8 months with vm down her left side. Hers is extensive, it is on her left cheek where it goes into the muscle, her left arm, hand foot and a large patch on her buttock and back of leg. We have been to great ormand st for loads of tests including mri and were told like you to see what happens. We havent noticed any difference in limb length yet but have been told by our local hospital that it might be a possibilty. We haven't noticed any lumps but her hand and cheek/lip swell up often.We have just been a case study for a convention of dermatologists this morning and will be sent more information as a result. If they come up with any ideas we will let you know.
We are off to Great Ormand street again next month for another check up, I think they like to see how these things develope before deciding on a course of action.
She is still beautiful and happy and adorable. I hope you get the answers you are looking for

Regards

J.Ds dad.

[kmacgregor]

Hi all,

First time posting here, though I've lurked for a bit. We have a daughter just under 4 months old now who has a preliminary diagnosis of CMTC with what we believe is a VM in her left wrist - that hand also swells/becomes puffy when she's sleeping or occasionally when she's nursing, but with a little movement or if we rub it gently, the swelling quickly resolves.

We just had the big MRI/MRA done yesterday so waiting on results for that. We've definitely noticed that she has less muscle tone in her left arm and arm (with the CMTC and VM), but she seems to not favor the weaker side so far (we'll see once she starts crawling and walking). We've tried to measure carefully but haven't noticed any length discrepancies either, just the girth. She's otherwise a very happy, laughing, smiling baby, full of energy, and is ahead of all of her developmental milestones, which is a delight for us.

Otherwise, we're also in the wait-and-see holding pattern.

Best wishes to you all!