moebius syndrome?

frankiesmom · 06-19-2012, 11:18 PM

frank has been diagnosed with a variant of this..finally.
it explains a lot of the weirdness about his issues, but they also told me that the nerve damage cant be repaired..is this true?
it really explains why he cant eat, and his hearing loss. apparently, being really delayed is kind of rare with this, but it does happen, along with the sensory stuff, plus the sleep issues.

**Bottesini** · 06-20-2012, 10:21 AM

Yes it is true.

Some kids have had facial surgery to give them a bit of an ability to smile and use expression, but what I have seen doesn't look natural, and I don't think it really affects the ability to eat , etc.

That's something that just has to be adapted to, and remember I have facial paralysis and am speaking from a position of experience.

frankiesmom · 06-20-2012, 10:57 AM

oh thats right!! so you do know about this. yeah, we saw the smile surgery thing and i dont think it would be worth it..i initially thought that it restored the nerves so they COULD smile properly, not fix the face into a permanent smile.

Sarfarigirl2011 · 06-20-2012, 07:27 PM

that's great that U guys found the answer!!!!! I might have some nerve damage when I was a young baby after I didn't even hear my parents calling my name.

deafdyke · 06-20-2012, 08:26 PM

hey, i'm not seeing ya on Facebook just so you know!

frankiesmom · 06-20-2012, 09:59 PM

??? are you sure? who are you on facebook again....?! i havent removed anyone!

frankiesmom · 06-20-2012, 10:00 PM

its just interesting because they said that the hearing, eyes, and face nerves are all interconnected somehow..i guess i never thought of it before. he is also on trazodone for sleep, which has been wonderful. unfortunately, other than a huge love of music, the hearing aids havent done much in the way of communication, and we have had them almost a year now.

**Bottesini** · 06-20-2012, 10:10 PM

Quote:

Originally Posted by frankiesmom

its just interesting because they said that the hearing, eyes, and face nerves are all interconnected somehow..i guess i never thought of it before. he is also on trazodone for sleep, which has been wonderful. unfortunately, other than a huge love of music, the hearing aids havent done much in the way of communication, and we have had them almost a year now.

You can look up a chart of the cranial nerves, by number and see how close together they are.

rockin'robin · 06-20-2012, 10:28 PM

Not much input here about the syndrome...but want to note that you have a very, very beautiful little boy!...Tugs at my heart strings.

frankiesmom · 06-20-2012, 10:51 PM

oh thank you! he is so precious to me. its so strange..its almost like we are stuck in time, with him..he is still the little baby he was LAST year when i found this forum, except he laughs a lot more, and he loves his baby music. hes also getting heavy too..he still wants to be snuggled like a baby and hes 38 inches tall now so its a bit tricky!

Boobookitty · 06-20-2012, 11:35 PM

Super cute little guy!

frankiesmom · 06-21-2012, 12:04 AM

thank you! here is another picture of him..he really is a good baby. i just hope we can help him develop and learn more so he can eventually learn sign language, or even learn to point at pictures even.

Sarfarigirl2011 · 06-21-2012, 04:53 PM

frankie looks so cute!!!

frankiesmom · 06-21-2012, 10:53 PM

thank you! hes getting so big..i was looking at his pictures from last year, and i cant believe how much bigger hes gotten. one thing he does now, and this is adorable..he will get his hearing aids off of the desk and bring them to me now! he loves wearing them..and his glasses. we are getting his new pair tomorrow because SOMEONE lost the brand new pair he got last month. in their living room. seriously, i cant find these things anywhere.

Sarfarigirl2011 · 06-22-2012, 09:26 PM

you're welcome! and plus there's boxes to keep the clutter in!
glass cases are helpful if the glasses aren't used

frankiesmom · 06-22-2012, 11:03 PM

that is the sad thing..they WERE in the case. he got his new ones today but we are going to exchange them monday because they are pink instead of red.

Sarfarigirl2011 · 06-23-2012, 04:39 PM

Quote:

Originally Posted by frankiesmom

that is the sad thing..they WERE in the case. he got his new ones today but we are going to exchange them monday because they are pink instead of red.

oh and LOL as they say, tough guys wear pink.

06-19-2012, 11:18 PM	#1 (permalink)
frankiesmom Registered User Join Date: Jun 2011 Posts: 515	moebius syndrome? frank has been diagnosed with a variant of this..finally. it explains a lot of the weirdness about his issues, but they also told me that the nerve damage cant be repaired..is this true? it really explains why he cant eat, and his hearing loss. apparently, being really delayed is kind of rare with this, but it does happen, along with the sensory stuff, plus the sleep issues.

06-20-2012, 10:21 AM	#2 (permalink)
Bottesini Joe's Friend Join Date: Mar 2008 Location: With Owl Sock Posts: 37,647 Blog Entries: 1	Yes it is true. Some kids have had facial surgery to give them a bit of an ability to smile and use expression, but what I have seen doesn't look natural, and I don't think it really affects the ability to eat , etc. That's something that just has to be adapted to, and remember I have facial paralysis and am speaking from a position of experience. __________________

06-20-2012, 07:27 PM	#4 (permalink)
Sarfarigirl2011 Registered User Join Date: Jun 2010 Posts: 2,032	that's great that U guys found the answer!!!!! I might have some nerve damage when I was a young baby after I didn't even hear my parents calling my name. frankiesmom likes this. __________________ 18 yr old girl with a moderate loss in the right and moderate/profound on the left. currently wearing purple Oticon Safari P 600s

06-20-2012, 08:26 PM	#5 (permalink)
deafdyke Registered User Join Date: Mar 2003 Location: Trebekistan Posts: 13,234	hey, i'm not seeing ya on Facebook just so you know! frankiesmom likes this.

06-20-2012, 10:28 PM	#9 (permalink)
rockin'robin Registered User Join Date: Apr 2007 Location: Jacksonville, Florida Posts: 15,677	Not much input here about the syndrome...but want to note that you have a very, very beautiful little boy!...Tugs at my heart strings. frankiesmom likes this.

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06-20-2012, 10:57 AM	#3 (permalink)
frankiesmom Registered User Join Date: Jun 2011 Posts: 515	oh thats right!! so you do know about this. yeah, we saw the smile surgery thing and i dont think it would be worth it..i initially thought that it restored the nerves so they COULD smile properly, not fix the face into a permanent smile.

06-20-2012, 09:59 PM	#6 (permalink)
frankiesmom Registered User Join Date: Jun 2011 Posts: 515	??? are you sure? who are you on facebook again....?! i havent removed anyone!

06-20-2012, 10:00 PM	#7 (permalink)
frankiesmom Registered User Join Date: Jun 2011 Posts: 515	its just interesting because they said that the hearing, eyes, and face nerves are all interconnected somehow..i guess i never thought of it before. he is also on trazodone for sleep, which has been wonderful. unfortunately, other than a huge love of music, the hearing aids havent done much in the way of communication, and we have had them almost a year now.

06-20-2012, 10:51 PM	#10 (permalink)
frankiesmom Registered User Join Date: Jun 2011 Posts: 515	oh thank you! he is so precious to me. its so strange..its almost like we are stuck in time, with him..he is still the little baby he was LAST year when i found this forum, except he laughs a lot more, and he loves his baby music. hes also getting heavy too..he still wants to be snuggled like a baby and hes 38 inches tall now so its a bit tricky!

06-20-2012, 11:35 PM	#11 (permalink)
Boobookitty Registered User Join Date: Jun 2012 Location: Missouri Posts: 34	Super cute little guy! frankiesmom likes this.

06-21-2012, 12:04 AM	#12 (permalink)
frankiesmom Registered User Join Date: Jun 2011 Posts: 515	thank you! here is another picture of him..he really is a good baby. i just hope we can help him develop and learn more so he can eventually learn sign language, or even learn to point at pictures even.

06-21-2012, 04:53 PM	#13 (permalink)
Sarfarigirl2011 Registered User Join Date: Jun 2010 Posts: 2,032	frankie looks so cute!!! __________________ 18 yr old girl with a moderate loss in the right and moderate/profound on the left. currently wearing purple Oticon Safari P 600s

06-21-2012, 10:53 PM	#14 (permalink)
frankiesmom Registered User Join Date: Jun 2011 Posts: 515	thank you! hes getting so big..i was looking at his pictures from last year, and i cant believe how much bigger hes gotten. one thing he does now, and this is adorable..he will get his hearing aids off of the desk and bring them to me now! he loves wearing them..and his glasses. we are getting his new pair tomorrow because SOMEONE lost the brand new pair he got last month. in their living room. seriously, i cant find these things anywhere.

06-22-2012, 09:26 PM	#15 (permalink)
Sarfarigirl2011 Registered User Join Date: Jun 2010 Posts: 2,032	you're welcome! and plus there's boxes to keep the clutter in! glass cases are helpful if the glasses aren't used __________________ 18 yr old girl with a moderate loss in the right and moderate/profound on the left. currently wearing purple Oticon Safari P 600s

06-22-2012, 11:03 PM	#16 (permalink)
frankiesmom Registered User Join Date: Jun 2011 Posts: 515	that is the sad thing..they WERE in the case. he got his new ones today but we are going to exchange them monday because they are pink instead of red.

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