Quantcast

Ataxia Support Network

Parents of Ataxian children


#1

Was just wondering how many peeps here are dealing with children that are ataxic??I would also love some advice from people who have had ataxia from childhood …on how best to help my son cope.His ataxia is episodic but he has some residual co ordination problems and his concentration and understanding some instructions seems to be affected.Simple things I have thought of …is buying coats that have large easy zips .His school are going to buy him some bean bags so that if he is feeling dizzy and cannot sit upright in class …he can lay and still participate and listen if he is not feeling too sick.They are also going to on occasions get a classroom assistant to scribe for him as his handwriting is very poor!


#2

Poor handwriting is really common - mine is bad as is my son’s. Its great that your son’s school is so supportive!! Many aren’t! I think that understanding is the biggest thing. I spent years in my school sickbay with ‘migraines’ as they were diagnosed then and they were good but I often felt guilty about taking up people’s time with the illness. The other thing is that because it’s so frustrating that exercise brings on attacks, it’s hard for kids but find lots that he can do and encourage him to step outside of his comfort zone, I wish I had done more when I was younger instead of always having a fear of an attack!! But that’s easy to say in hindsight!!

Take care
Louise


#3

Thanks for the replys.I will check out that website M.G.

Louise he is learning the drums at the moment which he loves and so far he hasn`t had an attack during one of the sessions.My husband is very musical and plays lead guitar in a band .I am hoping that the drums is something Oscar will shine at…as he suffers from low self esteem due to his condition …Here is a video to make you both smile Oscar dancing with his little brother at one of his dads gigs!

http://www.vimeo.com/5763934


#4

Birdy, I loved the video - what a pair of performers!!

Did you get my E mail that I sent to you?

Louise


#5

Hi Birdy, It sounds a great idea to try to get coats with big zips also shoes with Velcro straps would make putting on his shoes easier. My daughter has a toilet frame at home. At school she uses a healthfield chair. She also has an ANS assistant who scribes for her. The local authority have supplied I.T. equipment to the school to support her writing. Due to her condition she has very low self esteem so I try to get her involved with out of school activities. If you feel your son needs more assistance at school ask the school if a meeting can be arranged with yourself, class teacher, head teacher, physio, O.T. and I.T. represitive for special needs learning.

Good Luck.


#6

Hi Birdy, I saw this is an older post. How are things going now with your son 5 years later?

I have a 12-year old daughter with cerebellar ataxia and optic atrophy. She has difficulty doing most fine motor skills including reading and writing. But she does use her ipad a lot and it's given her a sense of freedom to navigate her own learning and entertainment as well. I have found most adaptive utensils don't work well for her, so we make the meals easy for her to use with her hands.

Continue with physical, OT, and speech therapy if you have it available. For us it's not so much gaining ground as it is not losing it.

Best to you


#7

Hi Birdy, my daughter has had Spioncerebellar Ataxia since she was a young baby. We first noticed there was a problem when at 11 months she started to pull herself up on furniture but never let go and fell. She was 18 months old and not walking when the drs started to investigate and then at age 2 still not walking they diagnosed her as being on the Autistic spectrum and then she was referred to a neurologist and neuro physios and they discovered on MRI scans that her cerebellum was atrophying (shrinking). She did start to walk unaided at approx 2 1/2 but fell all the time and this wobbling and stumbling and falling continued and now she is 17 and despite the drs saying she wouldn't be walking at all by the age of 12 she is able to walk a little but is very wobbly and unbalanced and falls all the time. She wears splints on her legs which have helped to keep her legs and feet in a good place and to limit the pes cavus deforming her toes. She does suffer with lots of dizziness and pain and has been taking Gabapentin for years now after having tried things like Acetazolmide which didn't help her at all and affected her sodium levels badly. She is due for a further MRI soon. I know there isn't anything they can do to stop the progression of the condition but I guess the drs need to keep a check on how things are progressing. She has no reflexes in her lower legs and very abnormal nerve conduction studies.

Ella has always insisted on trying all the physical things her condition has meant she cannot easily do and has never played on her condition. She has had some good therapy input over the years and school have been good for the most part. She now needs to sleep during the day as she gets so tired and college weren't very helpful with this at the beginning but with some fight they have been better the last few months. She is now having some bowel and bladder difficulties too related to her slow nerve messages.

It isn't easy being a mum of a child with this condition and I feel for you. If there's anything I haven't said you'd like to ask me please do. I will be happy to help you.

Best wishes

April


#8

Hi, birdy, I just wanted remind everyone that we have a subgroup for parents of ataxian children: http://www.livingwithataxia.org/group/parents-of-children-with-ataxia

You may wish to join it and post your discussions there, as it will keep them in one place for easier reference.