I know we only have a few parents out here, how many have a child with SCA I am not sure, but my question is this. How old was your child, or how soon after they were diagnosed did you start seeing signs of incontinence or lack of bladder control? How did you explain it to them? Any tips on how you dealt with this? Our daughter is 11, she was diagnosed just before her 10th Birthday with SCA. We were told it would be a very slow progression, and would likely take years before we noted any downturn in her physical abilities. In the last year her gait has gotten wider, her feet turning out more, difficulty swallowing, fine motor issues. In the last 6 months we have started seeing sporadic hand tremors, she has fallen a couple of times, trips right over her own feet. In the last month she has had 5 accidents, where they had been nonexistent. I took her in to rule out a UTI, and it was negative. Now we are putting a plan in at school to address the incontinence. Underwear that looks like underwear, but made for this purpose. She is also Autistic and has Apraxia, so is mostly non-verbal as it is. Any thoughts or suggestions appreciated, any resources as well. Thanks.
Hi Neuro Mom:)
I wonder if you might get replies from the GROUP 'Parents of Children with Ataxia ? xB
my son has AT please feel free to contact me. he’s 9 and progressing very quickly. he just got diagonosed in dec of 2015.
Hi Susan, first of all I think it is important to inform teachers, your child, friends, family, and all involved with your child of her type of condition. I don’t have a child with this condition, however, I do have young children, and I understand.
Teachers especially should know the condition, what to expect, and learn not to single her out amongst her peers. This requires discretely helping her as best they can without others noticing too much when accidents happen. The most embarrassing part for her will be singled out in front of her friends. Plan with your education professionals a strategy for dealing with her SCA issues. This will be important for her future in any activities.
Many SCA’s are unpredictable when it comes to progression.
I don’t understand how doctors can make predictions. SCA progression can speed up, or slow down at any given time, and may vary day to day. And we all seem to be different in each case.
It also ( but seldom) can go into a remission like state.
I understand how difficult it must be to explain to her, given her other conditions and age. Perseverance and trust will be on your side.
I think you’re on the right path by involving her school, may you have the best of luck, and my heart goes out to you, your daughter, and the rest of your family and friends.
A useful site may be: www.ataxia.org or www.ninds.nih.gov
Hi Susan🙂 I just saw this group on Facebook, it might be helpful to you🤔
Pediatric Cerebellar Atrophy Support