Infant with VBM on Head and Nuerological Issues on One Side

[Vavsie]

My beautiful little girl (4 2/3 mo. as of this posting) has a hemangioma on the left side of her head and one on her left pinkie. She is showing minor nuerological problems on her left side (arm and leg). The nuerologist suggested that she may have internal hemangiomas in her head. A recent CT scan was negative for calcification. I am not satisfied as there seems too much coincidence between the hemangiomas and the lateral nuerological problems and want an MRI. The Nuerologist doesnt want to order an MRI as they would have to "put her out" for it. Should I push for one until I get it or "wait and see what happens" as her nuerologist and pediatrician suggest? I personally would like to prevent seizures from causing permanent damage, not wait until more damage occures!

What other tests should be done and what other measures taken? Where can I find help and support?

She is getting PT through early intervention with the county and a full developmental assessment.

Thank you for your help.

Vavsie

[quinnysmom]

Please have your child tested for PHACES Syndrome ASAP especially if there are any signs of neurological issues. Children with hemangiomas of the head and neck are at risk for PHACES www.phacesasssocation.com.

An MRI sounds like it should be done to check for arterial anomalies in the brain and to ensure that proper bloodflow is present. I know this sounds concerning but I would insist on the MRI asap. Children with PHACES are at risk for stroke and I am worried about what you are noticing on the hemangioma side.

Please email me at jenniferduncan@phacesassociation.com because I want to help point you in the right direction. Follow your instincts right now and insist that she be imaged with MRI/MRA.

Jen Duncan
PHACES Advocate
Mom to Quinn 23 Months
www.quinnduncan.com

[CelesX]

My son has a tufted angioma on his leg. When he was 2 days old, they tried an MRI but it didn't work, so they did one the next day on anesthesia. He ended up having to stay in the NICU for one night, because his temperature dropped from the anesthesia.

However, he's had anesthesia 7 times since then (he is 20 mos now), once for a biopsy, more MRI's, broviac tube insertion, etc and he has had no other problems with anesthesia. He didn't even require a hospital stay overnight (except for when he was already admitted).

I'm not a doctor, but I would push for the MRI, even though she'd need the anesthesia.

[lpm]

"Putting her out" may be not be GA - it may be sedation. They ended up putting an IV w/sedation "stuff" in it in my youngest since mine kept waking up five minutes after they would give her a dose orally. She had an MRI at 2 months old. You may need to push for it as most doctors seem to be of the wait and see mindset, though I see no advantage in waiting for the MRI.

In our case, I told a client of mine about my kiddo's situation - the client was a neurologist (unrelated to my work, I am in engineering). I was hesistant to do so, as this neurologist is a very nervous guy, but I knew that (since he is so nervous) he would insist she needed one. Once the pediatrician heard that a neurologist thought she needed one, we had the MRI within a few days.

Use all of your resources. Also, if you have a PPO (don't need a referral), just start making appointments within any in-network specialists that may help your cause.

She has also had GA twice at a surgery center, and was free to leave about an hour after waking.