Child with ataxia

[KIrvine2017]

Hello my 7 year old has Ataxia caused (most likely) by post viral cerebellitis. It has been 3 months now and she has frequent falls and has been unable to run or do any of the things she loved before for months. She struggles to walk in a straight line and navigate any obstacles on the floor. There seems to be no information or support for children/families in this situation. Is there anybody out there going through something similar?

[Bert4of6]

Hi & Hello to you...

As a fellow newbie member of less than a month, let me say welcome to you KIrvine.

The folks on here are generally very responsive to new members but they can only offer their own experiences which, "maybe, perhaps, might" provide a better understanding of Ataxia and what that means to either suffer as a patient or suffer as a carer.

Answers are what we are all looking for and it can be very frustrating when we can't find them or the medics can’t provide them. So, for me, this site provides a means to blether with others who are in a similar situation.

So, apparently, I have “Progressive Ataxia” whatever that means? I say that because I still don't know, for certain, what's going on or going wrong with my brain or where my fused circuits will leave me. All I can say for certain (well almost certain) is that I wobble about and I occasionally fall over if I'm not concentrating on what I am doing and a host of other problems that are diving me insane.

In your post you ask “Is there anybody out there going through something similar?” and my initial reaction was to shy away from that because I’m not a parent of a seven year old child who is just starting out on this journey. I suspect that there are others on here that have reacted in the same way I initially have or because they simply don’t have the answers you seek.

Sorry… I’m always long winded when trying to say something but, you see, it’s all part of my daft strategy of distraction with lunacy lol – the more time I spend waffling on here, the less time I have for worrying about things I can’t control and besides – I am, not quite the full shilling.

Take care and I hope more knowledgeable and sane members will pick up from where I have left off…

CubbySnr.

[Bert4of6 in reply to Bert4of6]

Hi again... I was having a wee look around to try and find out more about you, and your child's difficulties and I came across another forum on this site called "Headway". It may provide another avenue for you to explore in your search for answers.

Anyway, just a thought

Take care... Cubby.

[wobblybee]

Hi😊

On Facebook, there's a closed group called Caregivers Support Community. You may very well find help and info from someone in a similar situation 🙂 Other than that, and I realise this doesn't apply in your case, there's also a group called Parents of Children with Friedreichs Ataxia🙂xB

[KIrvine2017]

Thanks, will take a look at those recommendations. Thanks for taking time to reply.

[cjpotter]

Hello, I do not sadly have any answers for you as my daughter is still yet to be diagnosed she is 6 and a half and in October 2015 complained of a earache three weeks went by and 1 course of antibiotics later she has never walked independtly again. She became a wheelchair user in that three week time frame.

My daughter has zero balance, she crawls at home and even then lands on her head, face, back etc. Despite the many things that have and are indeed happening to her ultimately she is a 6 year old girl who has a world to explore and for now is not letting these obstacles stop her trying. I could not be more proud.

As far as medical knowledge goes she is under gosh neurology department. We know that the cerebellum has shrunk and is being surrounded by fluid and in the year since the last mri it has shrunk more. A doctor locally we see saw her last week and said she appears more ataxic since our last visit. Our daughter is currently part of the genomes project, we may never get a diagnosis we have been told to expect that as a real possibility.

For now we try keeping our daughter as healthy as possible and we have a great walking frame that my daughter uses for playing at school. We hold her up to so she can walk around the toy shop etc so her legs get good exercise. My daughter is also a huge fan of being popped in a rubber ring and zooming around a lazy river or hot tub. It is really good to help her still have fun and experience new things. I hope this is slightly helpful in the fact that you know that your daughter is not alone and sadly other families are in our position. I hope that you manage to find something that you can enjoy together and feel normal albeit temporarily. X

[KIrvine2017 in reply to cjpotter]

Thanks for your reply and for the suggestions. It must be reassuring to be under the care of GOSH. I think I would feel more at ease if I felt that we were in touch with experts who have a better understanding of the nature of such neurological conditions. Thanks again and good luck on your journey.

[cjpotter]

I know in March a specialist in cerebellum ataxia and other neurological issues is coming to the UK. I am currently awaiting his name on my daughter's hospital notes. I know he has practised in Switzerland and is currently in usa. I will post his name when the notes arrive and maybe you could do some research into his clinics. Best wishes.

[KIrvine2017]

Thank you, that would be great

[cjpotter in reply to KIrvine2017]

Hi, I know that I have taken my time to respond to you with the vital information of the specialists name. This is because I had been still waiting for it myself. After a few phone calls, I last week sadly found out the gentleman in question sadly passed away before arriving in London for his important meetings. I feel deeply saddened for his family and for all those families he was helping. After alot of research I found out he was practising from The John Hopkins Ataxia Centre in Baltimore. Im not sure that this news was any help to you, as you may already know of the centre. However if you don't it may well be worth having a look at their website. I hope this message arrives to you, and that you and your daughter are well (as can be) and alot more informed on any of your questions. Take care x

[KIrvine2017 in reply to cjpotter]

Thank you so much for taking the time to send me this. I will take a look at their website. Best wishes, Kate

[cjpotter in reply to KIrvine2017]

Wow, that was a quick response. I had not forgot you at all in that time as I know personally any information you want to hang onto whilst searching for answers. We are not due to visit gosh until July now, but should any new names crop up be assured I will let you know. Carly x

[HarryB Administrator]

Hi KIrvine2017

Thank you for your post. I am sorry to read about your daughter. I was diagnosed when I was 15 (25 years ago) and I remember how absolutely scary, devastating and overwhelming it was, particularly as my family, friends nor I had ever heard of ataxia. But there is support and information available.

When reading the following please remember that if the underlying cause of your daughter's ataxia is post-viral cerebellitis this is classed as brain damage (in your daughter's case damage to the cerebellum by the virus) and these types of ataxia do not progress after the original insult.

I would recommend joining Ataxia UK. You can either join online at ataxia.org.uk or phone/email the helpline 0845 644 0606/[e-mail]. There are many benefits to joining the charity which is free and there is also a wealth of information on the website.

Please read the 'Newly diagnosed' section on the website at the following link ataxia.org.uk/newly-diagnosed

Go to the following link ataxia.org.uk/Pages/News/Ca... and download the 2 publications 'Ataxia:What's that' and 'Ataxia:a parents' guide.' Hopefully these will be helpful to you.

There is a closed Facebook group for parents of children with ataxia to chat with others in a similar position. If you email [e-mail] they can arrange for you to be added.

And of course, always feel free to post/ask questions on here.

I hope this is helpful to you.

Best wishes

Harriet

[Alex100]

Deafinatly check out Headway, it it a brain injury charity that rns day centers. they also run a home vistit support structure that you might find useful. Ive found citizens advise beuro to be helpfull with any benifits you might be entiled to. hope this is usefull to you

[naturegirl276]

My son just turned 3 and shortly after his 2nd birthday, he was hospitalized for ataxia. Doctors ran many tests.. everything came back ok. I did a lot of research and "googling" and I came across "gluten ataxia." I took him off of gluten right away. His balance and other symptoms slowly got better and doctors now believe that gluten was the cause. Maybe a possibility for your daughter?

[KIrvine2017 in reply to naturegirl276]

Hi I was just wondering how your son is doing? Did they ever test him for gluten sensitivity? My daughter is going to have the blood tests done next week.

[naturegirl276 in reply to KIrvine2017]

Hello! My son is doing great! Slight symptoms only show if he accidentally gets "glutenized", usually by cross-contamination.

So there isn't a true test for gluten ataxia but he did get tested for celiac and that came back normal. He DID test positive for one of the "gluten genes" - HLA DQ2. I think there's other gluten allergy/sensitivity tests that probably could've been done but he was already off of gluten by the time anyone really thought gluten was the cause- and you have to be currently eating gluten for the tests to be accurate.

What tests is your daughter getting done?

[KIrvine2017 in reply to naturegirl276]

I am so glad to hear that. I am not sure of the exact tests. I think just the standard blood tests. I have deliberately not cut out gluten yet to see what the test reveals but I know from reading that you can get a false negative so unless it is a positive result I guess we will be no closer to an answer. Thanks for your quick reply.

[naturegirl276 in reply to KIrvine2017]

Well my son's "gluten tests" came back normal and cutting gluten out of his diet has seemed to "cure" him. So even if the tests don't come back being positive, you can still try a gluten free diet to see if your daughter gets better. Most Dr's just do the standard Celiac Disease tests and Celiac has nothing to do with gluten ataxia. So if gluten is causing the ataxia, you won't know from a test. The only true test is to go off of gluten and see if symptoms improve.

How is your daughter? Have her symptoms stayed the same or gotten worse?

[KIrvine2017]

Hi sorry for the slow reply. She is slowly improving in some ways but her walking, running, going up and down stairs has a long way to go. Still no result on celiac screen test and, as you say, it may well come back negative anyway. I would like to try taking her off Gluten but then if I get her seen by a specialist centre that has Gluten Ataxia expertise I know they will tell me to put her back on gluten for the proper tests to work. It is such a battle trying to get her seen by someone who actually cares and doesn't just say 'oh well, she may never recover'.