s/o asymmetric crying facies

kegallagh

What kind of specialist did your pedi first refer you to?

My son's asymmetric mouth (when crying/yawning/smiling) was noticed at birth by a nurse who explained that it was likely a pinched nerve due to the trauma of birth. The pedi who did rounds before discharge said it should "clear up" by around 4 weeks. At both his 4 and 8 week appointments I brought it up and was told it would continue to improve with time.

Fast-forward to his 4 month appointment (w/ a new pedi at this point)... beforehand I googled a bit and found ACF. I brought it up to the new pedi, and he wrote me a referral to a neurologist. Now that I'm reading more about it, it seems like maybe a neurologist isn't the best referral? Should I call to get a referral to a geneticist or a cardiologist instead/as well?

 TIA!

Rose.9.6.03

My DD had sort of the opposite condition.  She had facial asymmetry (it looked like one side of her face was drooping or that she was biting her lip) when she wasn't actively engaging her mouth (smiling, crying, talking, etc.)  This is what it looked like:

She was diagnosed with a facial palsy from a damaged nerve.  However, around 9 months the nerve recovered and she lost the majority of the asymmetry over the next few months.  She still has some minor asymmetry (apparently while the nerve recovered, some of the transmitters died off because they weren't being used), but only something that I as her mother or a specialist might notice.  

We were also told that her facial palsy would likely resolve in the first month or two of life. The doctors became concerned when it didn't.  The neurologist actually ended up sending us to a plastic surgeon because they were worried it was permanent and that the drooping would get worse and lead to drooling/eating problems/talking problems.  Thankfully, the EMG the plastic surgeon ordered showed the nerve in recovery, so she didn't need to go through major surgery.

As far as whether to cancel the appointment with the neuro, I would not.  We see a geneticist for reasons unrelated to my DD's facial palsy and the geneticist just serves as sort of the synthesizer of information provided by other doctors and he determines what next testing to take.  Our geneticist essentially farms us out out to various specialists for anything that's not family history or genetic testing.   So my guess is that any geneticist would end up referring you to neurology.

I would, however, discuss with the neurologist a referral to genetics - particularly if neurology thinks that ACF may be the root cause (or some other genetic condition).  

Best of luck with the appointment.  I hope you get some good news.   

thefuturemrskudla

I would imagine you'd see a cardiologist, b/c ASF is often linked to ventricular septal defects (my son has ASF & VSD, although the latter seems to have resolved).

galway

I would probably see the neurologist and see what he says.  He will likely refer you to a cardiologist and/or geneticist if he feels it's necessary.  My son has an assymetrical cry but it was only noted by the geneticist AFTER we already knew about his heart condition. 

 As for a geneticist, we find ours to be extremely helpful.  Like a previous poster mentioned, she can act as a clearinghouse for other doctors - telling us who we need to see, and giving us names (sometimes these specialists actually have clinic at the geneticists office,) if we want.  It's nice to have one doctor sort of looking at the "whole picture" as opposed to each individual piece.

Hope everything turns out ok! 

pilararv

Hi!

I?m so glad to meet some more parents in my situation. I live in Chile right now and I had the same problem (my baby got the right diagnosis when she was born), although nobody could tell me where to go. I visited many phisicians (never visited a cardiologist because the same pedi who dg her, told me we would notice if her heart wasnt working). I understand, for what I have read, that around a 75% of children with ACF also have heart problems so a visit to the cardiologist seems reasonbale.

Last year I found a study proposing botox for aesthetic treatment (seems like plastic surgery has been used also). Right now my girl is developing a slight problem with her tooth, probably related to the lack of strenght of her lower lip. I would like to find out more about the use of k-tape to reduce movement of the active side (which is the approach used for palsy, for example). Please dont hesitate to contact me, I really need to find more people so that we can help each other to find ou more.