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ocean_o_curls 02-13-2008 01:45 AM

new and wanting some advice
I thought I would post some pics of my daughters birth mark and see if you agree with our ped? I first notice her birthmark around 2-3 weeks it was flat. By 2 months it had grown to where it wasn't flat anymore. Our ped took measurements and told me we will just watch it and that Olivia will need to have an MRI done at 6 months to make sure its not growing on her brain. Olivia is 4 months old now. We went to her 4 month well baby appt yesterday and the ped measured it again and said there wasn't a significant change that it had gotten a little puffier but not as much as she expected. She said she might hold off doing the MRI until a little later because Olivia isn't showing any signs that it is growing on her brain. Her birthmark is soft and squishy I'm not sure how to tell the difference between the different kinds. The bulge is below her skin. Anyway any comments? Should I just follow what her ped said and wait and watch and do the MRI or should i be requesting for her to get it looked at by someone else? Thanks for any comments I really appreciate it :)

don't mind the bald spot she's a mover when shes laying down lol and to put a face to the back of the head here's my beautiful Olivia with her big sis

nickbar 02-13-2008 06:22 AM

I think you should follow your instincts...what will put your mind at ease? I would recommend asking for a referral to a pediatric derm. or other vascular bmark specialist. They can evaluate the h. closure and know wht testing if any are needed. Some docs don't like to refer patients out...because they often feel you don't trust them or they just know what is best. I had to learn quickly that it isn't about the doctor and his/her is about my child and researching all the opinions/options. . But, in reality it matters what is in your daughter's best interest. It sounds like she has not had any issues related to her hemangioma. right?

If you have any questions please feel free to email me.

nickbar 02-13-2008 06:30 AM

by the way...adorable little girls!!!!!!!!!!!!!!!

lpm 02-13-2008 11:39 AM

Same opinion with our pediatrician regarding the MRI...and if they are actually concerned with growth on the brain, the opinion makes no sense. I understand that it is unusual for brain involvement, and if there are no signs of any problems, I would go with whatever you feel comfortable with.

That being said, and always doubting pediatrician/family doctor advice anyway (I won't get into those stories now), I wanted to get the MRI earlier. After all, hemangiomas have their fastest growth early on (first 6 months), so why wait until there might actually be a problem? I explained the situation to a client of mine who happens to be a neurologist. He was very concerned and said we needed the MRI right away (at 2.5 months old). Now, he is a very nervous fellow, so I knew I would get the opinion I sought from him.

Anyway, when the ped heard that a neurologist thought she needed an MRI, we were there within a few days. If you have a concern, use all of your resources to get what you need/want.

quinnysmom 02-13-2008 09:43 PM


Please ask for the MRI to be done to rule out a disorder called PHACES Syndrome. All children with large segmental hemangiomas on the head and neck MUST and should be evaluated for PHACES. It is an uncommon disorder but it is very important to rule it out. Children with hemangiomas on the ehad and neck can have vascular anomalies which put them at risk for other issues.

PHACES can be very mild (in many cases) or it can be more complicated. Most of what you will see online is about children with complicated cases (such as my son's) but there are many more children who do very well.

Please inquire about seeing a specialist or vascular anomalies clinic so that she can be evaluated.

I am not telling you this to scare you just so that you are informed because not all doctors are aware of PHACES yet.

Please contact me if you need more information

Jen Mom to Quinn (21 Months PHACES)
jennifer duncan @ phaces (no spaces)

ocean_o_curls 02-13-2008 10:28 PM

her ped said that they don't like to give babies younger than 6 months an MRI unless she feels it is necessary so that is why she has yet to have an MRI. I'm so lost on what to do our ped seemed surprised that it didn't grow too much and at 2 months had said mri at 6 months and now at 4 months is saying she thinks we can put it off since she is doing so well. I guess I will wait and decide at her 6 month appt. Thanks for the comments

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