I have a 28 year old daughter with Spinocerebellar Ataxia Type 1, A rare degenerative neurological disorder. She is 95lb's and she eats three meals a day plus snacks in between but never gains any weight. Should she be drinking weight gain shakes? She eats alot of fattening things....worried about weight
(I justt finished almost my response and used a wrong button and lost it! I willl try to answer it all again.. oops)
I am happy you have asked about your daughter. Just keep in mind this is patient to patient forum without profesional input.
Ii am sorry your daughter has been diagnosed with SCA1. Is there any othe r
family with it? Does she have swallowing probelms?
Of corse you are concerned about her weight when it sound like she is eating well. Has she seen a gastro intestional specialist? And does her neurologist have insight to if this iss from how her bowels may be affected?
Do they have and answers or input about this?
I know whenn there is one diagnosis it is easy to atribute all our problems to that. But unfortunatly that usually does not exepmt us from having something else going on. Are her doctors able to say it is from her Ataxia?
I wonder if a nutritionist oor dietitian can help.
Also, has her weight loss been new?
I hope she has a good Primary Care doctor that hhas looked into this.
Lots of questions! sorry.
And I hope all this makes any sence ... I can tend to ramble and lose focus.
Take care and hope to see you post again. Amo
Thanks for the welcome :) yes her condition is hereditary on her bio fathers side. He had it so she lost the 50/50 chance crapshoot :( she does have a problem with thin liquids (go right down her trachea so I have to thicken every liquid she drinks. She's okay with most food, no rice, chips, crumbly things etc....she was never this thin until a few years ago, she has been symptomatic for about 8 years. We do have an appt with a Gastroenterologist this month and also an ENT both. She probably doesn't eat as good as she could be and that's my fault cuz she can't cook for herself and im sorry to say a chef I am not! Have thought about the dietician will be doing that next. Thank u for the questions, it feels good to get it out and hope someone has different answers than I have been getting
I am glad to hear DD (darling daugher) have appts.coming up.
I always said , if I won the lottery one first this I d o is hire a chef wiith ! LOL
What a dream to have incredible andhealthy food at my beckon call!
This is good she will have a workup with the specialists.
Did she ever have a swallow test before? And maybe the gastro will shed some light too. Hopefuully thhey are at least somewhat versed in neurological issues if this is her case causing her wight loss..
I tend to have a miix of gastro iissues.
Food will get stuck in my throat and they were able to see how poorlly peristalsis moves it through my esophagus. And my stomach will not empty weell, I may feel full after a few bites .
My speech therapist was very helpfull wiith my swallowing issues and how to be as safe eatting.
I see your profile is in the windy city... since she has been diagnosed with SCA1 i will presume she has seen some top doctors in the area.
I hope these appts comin gup will shed some light.
Have a good day, Amo
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