so my name is becky im 23 and have a husband with episotic ataxia and three children one with sensory prosesing disorder who is 3 a10mth old who seems to be on at the moment after heart problems at birth and then there is Adison who is almost 2 she had ataxia she has always been unstedy and has had a mild delay in her developmental groth she has alway been shakey and has had sevrel falls 8 of which have ended in trips to the hospital and 2 of those where concustions this last one was a doosy she fell of the kitchen chair onto the tiles beat the chair to the floor and it landed on her temple she had lost all controle of her movement was upset and her eyes where darting we rushed her to the ED and with in an hour they had organised transfer to the ramwick childrens hospital to be moved ones stable straight the their neuro ward under a nuroligest train in care for ataxic infents and toddlers at this point although we had asked every dr she had seen over the past 2 years to test we still didnt know this was infact ataxia over the following two days she couldnt walk hold wieght in her body for more than a minute and her speech was more unclear than before what the scearest two days of my life the following week her meds were increasted and in this time she went from having 5-7 a day to 1-2, this all happend three weeks ago she is back on her feet at home and next week will be returning to preschool sins being on diamox her speech is clearer than ever before how every she is still having atax if she is woken suddernly or this afternoon on the swing so im guessing the movement.
just wanted to know if anyone had a simila story or any advice.
I don't have Episodic Ataxia but just wanted to say Hi and welcome to the group. It sounds like it's maybe a genetic form of Episodic Ataxia as your husband also has it?
We do have members with Episodic Ataxia and children with Ataxia so I'm sure they will come along soon.
hi, my youngest son Charlie has cerebellar ataxia. he is 4. he was finally diagnosed last year after 4 paediatricians put his wobbliness and inability to walk down to lax ligaments. i googled his condition in november 2010 and discovered ataxia and immediately knew this was what he had, as did the neurologist when she first saw him. he was very unstable, would bump into absolutely everything. he didnt sit up until 18 months, he crawled around 2 and started walking (in his own way) at around 2 and a half. due to his diagnosis of "lax ligaments" he had already been having physio since he was about 20 months so he had been given a padded helmet to protect his head as he was contantly covered in bruises. i believe that dramatic tho it sounds, this has saved his life on several occasions, and offered him alot of independence he wouldn't have otherwise, he was constantlyfalling. we are talking every few minutes, and he always landed on his head. he doesnt take any meds. his speech is slurred but understandable. between the ages of 2 andup to him being about 4 life was extremely hard, but since just before he turned 4 he has come on so much. he still wears his helmet all the time as he still probably falls around 10 times a day but he is much steadier on his feet. he knows when he is tired now so will rest when he needs to. he is just potty training and doing really well. so all in all things are going really well. i hope this helps a bit x
I have Sporatic SCA. I dont think It really matters what classsfiation,
when it comes to the ataxic person that a good food plan can help
us be stronger and handel any meds even better.Look into Gluten diet
and refined sugar elimination (frankeinstestine food) in discussions and
De Hyman YouTube to get some information. It will not cure ataxia but it
will help over time. How can it not right? Good luck on your journey with this.
It’s just a new chapter not the end Ma. I have had SCA since 2006 and am
alway still learning about this ataxia! ;0) It can be done! ;0) You can help look your connecting with others here and will find tips you can try and to use see if they help even a little but. My thought is lots of little tips add up to allot!!! Hang in ther!!
Jessica neal said:
hi, my youngest son Charlie has cerebellar ataxia. he is 4. he was finally diagnosed last year after 4 paediatricians put his wobbliness and inability to walk down to lax ligaments. i googled his condition in november 2010 and discovered ataxia and immediately knew this was what he had, as did the neurologist when she first saw him. he was very unstable, would bump into absolutely everything. he didnt sit up until 18 months, he crawled around 2 and started walking (in his own way) at around 2 and a half. due to his diagnosis of “lax ligaments” he had already been having physio since he was about 20 months so he had been given a padded helmet to protect his head as he was contantly covered in bruises. i believe that dramatic tho it sounds, this has saved his life on several occasions, and offered him alot of independence he wouldn’t have otherwise, he was constantlyfalling. we are talking every few minutes, and he always landed on his head. he doesnt take any meds. his speech is slurred but understandable. between the ages of 2 andup to him being about 4 life was extremely hard, but since just before he turned 4 he has come on so much. he still wears his helmet all the time as he still probably falls around 10 times a day but he is much steadier on his feet. he knows when he is tired now so will rest when he needs to. he is just potty training and doing really well. so all in all things are going really well. i hope this helps a bit x
I wish I had advice for you but I'm an adult with ataxia. I've read that children can have a bout of ataxia after a viral or bacterial infection and that it goes away eventually. Of course, your best bet is to listen to your neurologist. Maybe she has episodic ataxia like your husband. I wish you the best as with a child it can be scary!
I am overwhelmed by the respons to my post we are finding out more every day on adisons ataxia and what her triggers are startle seems to be her biggest while medicated. My husband has had another big one been off his feet for two days now hoping he gets some relefe soon and we hear back from the Australian ataxia specialist who is meant tone taking the family on.