My daughter was born with septo optic dysplasia, a vision impairment for the most part; arthrogryposis, stiffness of the joints;
Submitted by Anonymous on Feb 27, 2013 - 6:02am
My daughter was born with septo-optic dysplasia, a vision impairment for the most part; arthrogryposis, stiffness of the joints; slow development of her biceps (so her arms mostly stay down by her side); and no sense of smell. she refuses to eat solid foods or drink anything other than pediasure or water. I'm really at a loss and looking for someone that could relate and help! she'll be two in July and we've been doing therapies and have tried everything, it seems.
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Posted by antdeb on Feb 27, 2013 - 11:23am
I adopted a totally blind little girl several years ago. She was just 5 years old. She was eating nothing other than yogurt. Sometimes she goes through periods of time when she will eat mashed potatoes or stage 2 bananas. We put in a permanent feeding tube a few years ago. It has helped her grow in so many ways. I highly encourage it when you reach that point. I wish you the best of luck. Not much help, but I do get it.
Posted by Amber Bobnar on Feb 27, 2013 - 9:37pm
More answers on our Facebook page: https://www.facebook.com/wonderbaby.org/posts/251737248296042?comment_id...
One mom recommends vibrations (like a vibrating chew toy) to help improve oral motor sensitivity. Good idea!
Posted by am_elia on Mar 25, 2013 - 2:03pm
My son is going on 3 at the end of May and he's still eating pureed foods. He is diagnosed with ONH/SOD and has feeding issues/texture issues/etc.
As of last September he really started eating so don't think it's getting too late for your daughter. Max wouldn't eat anything with the slightest food chunk in it, if the texture was similar to pasta in a sauce. When I took him to a feeding clinic and explained the issues the practioner said that Stage 3 items like pasta in sauces and veggie chunks in a puree are not the next step for children with feeding issues.
She suggested that I allow Max to play with food without making him feel like he needs to eat anything. He doesn't like to play with more liquidy items or crunchy things but does like softer pancake type stuff. He will use pancake pieces as spoons but won't chew on them, however, I'm hoping that will come with time.
If you're not already doing it, I would suggest making all of your daughters food and pureeing to a yogurt consistency. If you only give her the things she likes she won't eat anything else. It will be a headache at first but if it works, it works to just move her on to different foods. It's not easy...I know.
And, like the post above--you can try the vibrations motor sensitivity. I wasn't able to do that with my son very much but he just started to enjoy teeth brushing and will now allow me to massage his cheeks so I might be able to give the vibrations another try.
Good luck! Keep in touch if you want.
amberandmax@hotmail.com
www.amberandmax.com
Posted by am_elia on Mar 25, 2013 - 2:03pm
My son is going on 3 at the end of May and he's still eating pureed foods. He is diagnosed with ONH/SOD and has feeding issues/texture issues/etc.
As of last September he really started eating so don't think it's getting too late for your daughter. Max wouldn't eat anything with the slightest food chunk in it, if the texture was similar to pasta in a sauce. When I took him to a feeding clinic and explained the issues the practioner said that Stage 3 items like pasta in sauces and veggie chunks in a puree are not the next step for children with feeding issues.
She suggested that I allow Max to play with food without making him feel like he needs to eat anything. He doesn't like to play with more liquidy items or crunchy things but does like softer pancake type stuff. He will use pancake pieces as spoons but won't chew on them, however, I'm hoping that will come with time.
If you're not already doing it, I would suggest making all of your daughters food and pureeing to a yogurt consistency. If you only give her the things she likes she won't eat anything else. It will be a headache at first but if it works, it works to just move her on to different foods. It's not easy...I know.
And, like the post above--you can try the vibrations motor sensitivity. I wasn't able to do that with my son very much but he just started to enjoy teeth brushing and will now allow me to massage his cheeks so I might be able to give the vibrations another try.
Good luck! Keep in touch if you want.
amberandmax@hotmail.com
www.amberandmax.com