Hello, all. I am new here. My 6 year old was diagnosed with Episodic Ataxia Type 2 about three weeks ago. This diagnosis helps explain a lot of the concerns I have had in regards to my daughter's health. One thing I notice about her is that she really struggles with fatigue especially in heat. I am looking into getting her fitted for a mobility device....such as a portable chair. Not even sure what I am talking about since I am new to this.
My question is, for those of you that are a parent of a child with ataxia or as an adult with ataxia, have you discovered that this is something you need?
If we go on walks, or to the museum or a park, she quickly becomes tired and I am usually trying to figure out a way to get her home....carrying her, piggy backing or something. This just is not going to keep working for me as she continues to grow. I was hoping that she would 'out grow it' but with this diagnosis, I am figuring this is now our new way of life.
Im sorry I giggled at your story with thoughts of a 6 year old with a mobile chair. I have ataxia and I have kids. I feel for you. But at 6. I would think a wheel chair would be better. I do not think a 6 year old is ready for a mobile chair. But you know your daughter. And what she is ready for. Maybe You are thinking of a wheel chair. I was confused on a mobile chair. A wheel chair would be a good idea for her. Just my thought!
I would talk to your daughter’s neurologist and ask for recommendations. They can get some things covered by insurance too if the doctor writes a Rx for a device for her. Let the experts fit her to the right tool.
I have a daughter with cerebral Ataxia. She has been a wheelchair user since December (although her physio had spoke about one before). We use it outdoors because she is so unsteady and tires very easily. The physio measued her to ensure a proper fit, and my daugher was able to choose the colour and the design for the wheeltrims (it is a self propelled wheelchair). My daughter choose a red frame with flowery wheels. Please ensure you take proper advice from a professional.
Good luck with this and best wishes to your daughter.
My daughter is 6 years old. She first showed symptoms when she was 14mths old, many diagnosis were given then rulled out.From the age of 2 she was very "wobbly" most of the time but was still in a toddler stroller at this stage. Although she has only just got a wheelchair her physiothearpist first spoke about one when she was 3.5yrs (just over 2 years since first symptoms). However we had a younger daughter who was in a stroller therefore we often carried the younger daughter to use the stroller for my daughter with ataxia.
To answer your question it took 2 years from first symptoms to needing a wheelchair for longer distance & took 5 years to requiring outside at all times. However I am hopeful this will change.
Mom of ataxic said:
Thanks for everyone for replying to my question, I am so grateful I am not going through this alone!!
Pauline, do you mind telling me how old your daughter is? Also, how long was the time from the diagnosis to the time of needing a wheelchair?