Hi my name is katherine new to the site in august 2011 we was told our 3 yr old daughter as bilateral ataxia she has tremors that run down both sides of her body mainly effecting her fine motor skills. We currently see physio and occupational therapist and a pre school portage worker. my daughters gene tests and mri was clear they have refered us to a childrens neurologist. so as yet we do not know what is causing her condition.
be good to hear from anyone who have young children with the condition
Hi Katherine, I’m relatively new as well.My daughter is 10 & has recently been diagnosed with Freidrich’s Ataxia. Hopefully you will get some answers from the neurologist.
My son was diagnosed with Ataxia in about grade 8, so I can't really offer any practical advice for you, but this group is great, and I bet there is someone who will have something useful to say. I wish my son's ataxia had been noticed earlier, as I think it explains some of his auditory processing abilities, and explains some of his coordination issues growibng up. Also, glasses might have helped him if prescribed earlier. We are still waiting for a neuro-opthamology consult!
Cheers Alison hope so as our Health Vistors etc arent really much use we have been 8 months to see Dr livingston hes a childrens neurologist at Leeds West yorkshire and comes to our hospital Calderdale once every 4 month so hopefully we will get an appointment for his clinic at end of may. I dont know much about ataxia and at first they thought she had angelmans syndrome (puppet children syndrome) but tests ruled that out. Does your daughters ataxia effect much of her day to day living samantha is refered too as capable as she can walk talk hold things etc its when she is tired or when she uses fine movements that you see it
Thanks NFB same here the health vistors picked up some problems with her walking and co-ordanation in July 2010 but kept refering her to speech and lanuage it wasnt untill i sat in my gps office for four hours in June 2011 that we got the referal to the consultant who monitors her in aug 2011. She was a bit behind in speech but 2 month later she caught up so like you they wasted a year going back and forth
hi,
Unfortunately the wheels seem to turn very slowly!! Caitlyn has had problems since she was a baby because of her hips.We put lots of the early problems down to that until she was given the all clear hip wise when she was about 5. Her mobility worsened & now, yes,affects daily living. Diagnosis has taken a long time because Ataxia isnt a well known condition,originally she had been diagnosed with dyspraxia.She gets the support she needs from podiatry,OT, Physio & SALT mainly & is being monitored for other conditions associated with the condition. From our experience Physio & OT have been the most help in supporting us with exercises & equipment to make daily life easier so if you have them on board all ready that’s good! Don’t know if this helps, Caitlyn’s take on all of this is that she doesn’t see what " the big deal is having been diagnosed, FA is just a name it doesn’t mean anything". In some ways I like her simplistic take on it! Take care.
katherine said:
Cheers Alison hope so as our Health Vistors etc arent really much use we have been 8 months to see Dr livingston hes a childrens neurologist at Leeds West yorkshire and comes to our hospital Calderdale once every 4 month so hopefully we will get an appointment for his clinic at end of may. I dont know much about ataxia and at first they thought she had angelmans syndrome (puppet children syndrome) but tests ruled that out. Does your daughters ataxia effect much of her day to day living samantha is refered too as capable as she can walk talk hold things etc its when she is tired or when she uses fine movements that you see it
My daughter is 5 years old. She has had symptoms of ataxia since 14 months old. This effects her fine motor & gross motor skills. Her symptoms become more evident when she is tired & she tires very quickly. I have found that I have to build rest priods into her daily routine. When at nursery the other children seemed to just accept that my daughter was a little differant & couldn't run as well as they could. She tends to fall alot but I keep telling her everyone falls some times.
The neurologist at Yorkhill in Glasgow was good and investgated her throughly however was unable to diagnose the type of ataxia and therefore the cause. I therefore asked for a referal to Dr Peter Baxter at The northern General Hospital in Shefield. This is a centre for excellence for Ataxia. Ataxia UK had suggested we see Dr Baxter.
Although he has been unable to say what has caused my daughter's Ataxia we have a diagnosise of Cerebal Ataxia.
Hi Pauline Samantha as simlar problems when tired also when over excited. We live in Halifax west yorkshire and the neuroligist from leeds Dr Livingston does a clinic their but if I get no joy with them. I will ask them about the centre in sheffield thank you for letting me know about it.
On a practical note, I found a charity called Contact a family on the Internet. The website had info on different types of ataxia & when I spoke to someone they gave me useful info with regards to finances including DLA, blue parking badges etc. I don’t know if Ataxia UK have a local support group near you? When I contacted the group near us they have 2 members who have Friedrich’s Ataxia like Caitlyn but are much older so wouldn’t be able to help Caitlyn but it could be worth a try.We live in Lancashire & Caitlyn has been seen by Dr Newton from Royal Manchester Children’s Hospital. Although he isn’t from the regional centre in Sheffield he has been really good with Caitlyn & us. Hope this is useful.
I have a 23 month old son with ataxia(unknown) and tremors also. His started at 15 months. He woke up one morning after a low grade fever and we noticed his hands tremoring when he ate. The ataxia came about 1 1/2 weeks later. His tremors are worse at times and his ataxia is worse at times, but neither completely go away. We have had all kinds of genetic testing, MRI's, blood work, and lumbar puncture. All have come back clear. The neurologist's don't know. I haven't found anyone who has young children with this symptoms so I'm looking forward to talking with someone who knows what I'm dealing with. We are scheduled with a leading expert on ataxia in a few months. We have taken him to a naturopath who says that he has a parasite. She has put him on supplements and they seem to be helping. Has your daughter gotten any worse or stayed about the same? Have you noticed any triggers?
Hi Jabooshi with samantha things seem to pretty much be at status quo it was noticed by physio that she has lost some strength in her right hand which was strongest. But as she as got older she as developed coping mechinisms for dealing with task she finds difficult. Her tremors become worst when she is tired or over excited. Her consultant tested all her vitiam levels etc and said they was within normal range so she isn’t on supplements. I try and give her a varied diet with chocolate in moderation because she is hyperactive at times anyway. We haven’t been refered to an attaxia specialist so if you could let us know what they say in general it could be useful. Her OT and Physio are really good she starts reception class in september and they have been pretty good at putting things in place for her she uses weighted wrist bands for fine motor skill tasks and she weighted cutlery and they r gonna sort a sloping desk so she can rest her arms as she writes etc and if she still struggles they will provide her with a laptop to type instead of writing all time.
My daughter is 6. She has been given all the equipment you outline above from O.T. & physios. She also has a laptop in school she is in p2. We had to push to see an Ataxia Specialist Neurologist. If you feel it is need you should ask you consultant.
katherine said:
Hi Jabooshi with samantha things seem to pretty much be at status quo it was noticed by physio that she has lost some strength in her right hand which was strongest. But as she as got older she as developed coping mechinisms for dealing with task she finds difficult. Her tremors become worst when she is tired or over excited. Her consultant tested all her vitiam levels etc and said they was within normal range so she isn't on supplements. I try and give her a varied diet with chocolate in moderation because she is hyperactive at times anyway. We haven't been refered to an attaxia specialist so if you could let us know what they say in general it could be useful. Her OT and Physio are really good she starts reception class in september and they have been pretty good at putting things in place for her she uses weighted wrist bands for fine motor skill tasks and she weighted cutlery and they r gonna sort a sloping desk so she can rest her arms as she writes etc and if she still struggles they will provide her with a laptop to type instead of writing all time.
I will let you know what we find out from the specialist. I also notice that my son's tremors are worse when he is tired or when he's in pain. He seems perfectly normal in every other aspect. He is trying to talk and seems like he isn't having any troubles that way. Does your daughter have speech problems?
katherine said:
Hi Jabooshi with samantha things seem to pretty much be at status quo it was noticed by physio that she has lost some strength in her right hand which was strongest. But as she as got older she as developed coping mechinisms for dealing with task she finds difficult. Her tremors become worst when she is tired or over excited. Her consultant tested all her vitiam levels etc and said they was within normal range so she isn't on supplements. I try and give her a varied diet with chocolate in moderation because she is hyperactive at times anyway. We haven't been refered to an attaxia specialist so if you could let us know what they say in general it could be useful. Her OT and Physio are really good she starts reception class in september and they have been pretty good at putting things in place for her she uses weighted wrist bands for fine motor skill tasks and she weighted cutlery and they r gonna sort a sloping desk so she can rest her arms as she writes etc and if she still struggles they will provide her with a laptop to type instead of writing all time.