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Ataxia Support Network

Hi I am Federico


#1

Hi I am Federico and I came to Malta in November 2016.

I have a 4 years old daughter that was diagnosed with corporal ataxia in July 2017.
Doctors have advised to start Delocato method training in order to cure the balance and coordination problems and also to buy a DMO-dinamic sensomotoric orthesis which should be worn by the child during the day.

Is there anyone that can suggest me a place here in Malta where I can collect information about this training and DMO?

It’s th first time i write on this site so if this is not the proper place for this kind of request, please let me know if I have to open a new topic in another forum.

Many thanks.

Federico


#2

Hi Frederico🙂 Do you actually mean that your daughter has been diagnosed with Cerebellar Ataxia?

If this is the case, you have been misled, the Delacato/Dorman Method is primarily thought to help with Autism, and possibly Cerebral Palsy. It is not prescribed as therapy for Cerebellar Ataxia.

The very best advice is to consult a Neurologist who has experience of ataxia patients, not all Neurologists can offer such specific advice. It is also helpful to consult a Neurophysiotherapist who can prescribe specific exercises.

DMOs (dynamic movement orthoses) offer postural support within a range of movements (flexibility) as well as encouraging muscle usage. They need to be individually fitted, according to size and function. Information can be found online by googling for example www.dmorthotics.com

I am very sorry I cannot give you the answer you are looking for. There are many types of Cerebellar Ataxia, and in a lot of cases therapy can be trial and error, so there is temptation to try any suggestion. I live in the UK, if you ever move here and register with a local doctor, your daughter could be referred to an Specialist Ataxia Centre🙂xBeryl


#3

Thank you Beryl for the information and the website provided.
It’s very useful for me as I have just started to face the problem.
Regards.


#4

Hi Federico, I have Episodic Ataxia What I found with my condition is that my proprioception is very compromised. I’m not sure if this is the case with other ataxians but my coordination improves with resistance. I often go out carrying a heavy backpack because it increases some proprioceptive feedback. Almost anything designed to increase feedback helps with my movement, such as hiking poles (note I don’t use them as support for weight, but as a mean to gather feedback from my arm etc). Also I found that I can walk much better in water and I suspect it’s for the same reason (I LOVE being in water now as it’s the only time I feel normal). After googling the suit you mentioned, my suspicion is that it may help your child. So far the most effective treatment for me is dietary (very strict ketogenic diet) but I don’t want to oversell it as there’s no research on dietary treatment for Ataxia.


#5

:slightly_smiling_face: We have to be very careful about what to advise. It’s often the case that people are desperately looking for anything that will alleviate, or stop symptoms in their tracks.
The Ketogenic Diet is in all likelihood to be of benefit to people with Neurological symptoms associated with Epilepsy. Its very strict, and could have an adverse effect on someone with certain symptoms. In the case of children, it’s always best to follow the advice of a Neurologist🙂xB


#6

Yeah probably went over my head a bit :stuck_out_tongue_closed_eyes:! I am very desperate to reverse the course so probably overstepped my advice a bit. It is a n=1 experiment, and as you said the diet is extremely restrictive. It’s not known about the long term health impact although short term seems to be safe. At the moment I’m just open to try anything that can make me more functional… I’m still keeping my hope that I can slow the progression, a false hope or not I dunno. I understand your concern about me overstepping it a bit.


#7

Hi Anna. Thank you for replying and apologies for my late reply. My daughter was diagnosed with this disease in Hungary where she leaves with her mother. Hungarian doctors diagnosed “corporal ataxia” (related to body) but I don’t know if this is the proper way to translate it in English. In their opinion the brains seems not to be affected but we are waiting for having a MR to make it sure. Basically she has difficulty in coordination with arms and legs so, for example she can’t stand on one leg and when running she often falls. She is left handed and right footed (for example when kicking a ball) but she is not aware of it. Also my daughter enjoys a lot being in the water ( swimming-pool or sea) for swimming, playing and walking therefore we thought to let her have swim classes.Doctors said that with the proper training she can improve her condition.


#8

Dear Federico, glad to know that your daughter does not to have problems in her cerebellum. From what you describe her symptoms seem to best match to sensory ataxia. My brain scan is also totally normal as I have Episodic Ataxia so they won’t see structural damage (it is a form of channelopathy). Glad to hear that she enjoys swimming! I was not a strong swimmer before this disorder now I enjoy it immensely. Since her problem does not stem from structural damage, it does seem possible that she will have a good chance in training her motor memories through different kinds of programs even with the compromised proprioception. However I guess it is still important to know what the underlying cause for the neuropathy (if there is any). Good luck to your little star :slight_smile: