Neurologically impaired and physically disabled adult child

Posted by amandasmom @amandasmom, Wed, Feb 20 11:19pm

My beautiful daughter had no birth trauma 33 years ago, only low blood sugar and low birth weight. Her heart and lungs were fine, and we were told that the low blood sugar was not a huge issue. As time went on and we became aware that developmentally, things weren't normal, her chromosomes were analyzed. Nothing abnormal was discovered and around her first birthday she was admitted to U C San Francisco Children's Hospital for tests. After all the testing was completed we were told that her brain and nervous system had not developed normally during the first trimester of the pregnancy, that she did not fit into any known syndromes, and that she would not be able to walk or talk. Throughout her life she has always struggled with digestive issues. It has always seemed as if she was extra sensitive to whatever was going on in her stomach and bowels, and that her well being was very much dependent on how she felt in her "gut". She might be complaining one minute and laughing in the next second, and it all revolves around her digestive tract, which doesn't function normally and is very sensitive. It's complicated. Due to her neurological issues, who knows if valves open and close when they should or muscles expand and contract when they should. She may have SIBO but can't take the breathing test to prove it. We've eliminated dairy, gluten and soy, which seemed to help. So many things make her gassy and uncomfortable that her diet is limited and we struggle to meet her nutritional needs without causing her discomfort. Being on a low FODMAP diet seems to help a bit. Constipation is an ongoing issue. Being unable to walk doesn't help with that. She is a mystery in so many ways, but is also the most precious little person in the world and we love her dearly. Does any of this sound familiar to anyone?

Hi @amandasmom, I see you also posted a message in the Digestive Health group and are getting some responses there:
– Caring for a wheelchair user who has complicated digestive issues. https://connect.mayoclinic.org/discussion/caring-for-a-wheelchair-user-who-has-complicated-digestive-issues/

I welcome you also to the Caregivers group and would like to bring some fellow members into this discussion, like @ihatediabetes @mrsjoanie @fernandavidigal @lisapraska @mrmaid11.

Amandasmom, what physical therapy or movement manipulation is Amanda able to do?

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@colleenyoung

Hi @amandasmom, I see you also posted a message in the Digestive Health group and are getting some responses there:
– Caring for a wheelchair user who has complicated digestive issues. https://connect.mayoclinic.org/discussion/caring-for-a-wheelchair-user-who-has-complicated-digestive-issues/

I welcome you also to the Caregivers group and would like to bring some fellow members into this discussion, like @ihatediabetes @mrsjoanie @fernandavidigal @lisapraska @mrmaid11.

Amandasmom, what physical therapy or movement manipulation is Amanda able to do?

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We have a prone stander at home that we get her into for 20 minutes a day. She wears AFOs for this because her ankles turn inward with lots of force and thus the 20 minute limit.. She puts lots of pressure on those inner ankles. We do some range of motion exercise for her thighs, as one in particular tends to tighten up with all the sitting. She doesn't have contractures, instead has generally had low muscle tone, but does really tense up when struggling with digestive discomfort. She isn't getting physical therapy now. Throughout her school years until she was 21 physical therapy was basically working on going from sit to stand, which she does help with by pushing off on her armrests and using her leg muscles to stand.

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@amandasmom

We have a prone stander at home that we get her into for 20 minutes a day. She wears AFOs for this because her ankles turn inward with lots of force and thus the 20 minute limit.. She puts lots of pressure on those inner ankles. We do some range of motion exercise for her thighs, as one in particular tends to tighten up with all the sitting. She doesn't have contractures, instead has generally had low muscle tone, but does really tense up when struggling with digestive discomfort. She isn't getting physical therapy now. Throughout her school years until she was 21 physical therapy was basically working on going from sit to stand, which she does help with by pushing off on her armrests and using her leg muscles to stand.

Jump to this post

I should clarify that Amanda isn't able to follow directions and do exercises that we ask her to do on her own. She also had spinal fusion surgery for scoliosis, thus has no spine flexibility and when we change her we "log roll" her. She loves being out of her chair and in her bed where she has more freedom of movement. She rolls and rocks and enjoys being active. She never crawled, but does move around by rolling.

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