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Ataxia UK
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2 year old toddler with Ataxia

Hi - I have a 2 year old who became very unwell almost 3 months ago. She lost her ability to sit stand speak and developed nystagmus. This happened while we were on holiday. As the weather was very hot, doctors immediately put her on a drip. She is an extremely stubborn and fussy child so cried her eyes out 24 hours while the drip was on. She was so unsettled that she did not sleep for a few days and was constantly crying. I initially thought that she lost all her abilities due to this excessive crying. Doctors suggested we do a brain mri followed by EEG which were all normal. They gave her a dose of steroids and she started her normal activities over the course of a few days (she slept immediately after the steroids - she had not slept for 4 days!). Unfortunately 6-7 weeks later her speech started sleuthing again and whereas she didn’t lose her ability to walk, she became ataxic (very wobbly, falling every few steps and very unbalanced).

Has anyone else’s child experienced similiar symptoms? What diagnosis was made for them? She is due to have her mri but I am dead worried about my daughter so thought I will ask for advise here.

A few additional facts - I have always suspected some food intolerances in her since she was born. So I breastfed her while staying on dairy free egg free nut free and low gluten diet. She gained weight in the first 2 months but this became extremely slow after 2 months ( on hindsight I think the low weight gain may have been due to my new diet). Doctors told me she did not have allergy so I started re-introducing dairy back in her diet from 1 year if age - a bit of on and off I.e. stopping when I noticed her reflux getting worse and restarting in hope of success. I never kept her gluten free although did keep her gluten intake to a very low amount.

I will greatly appreciate if anyone has any similar experiences they can share as I am dead worried about my baby! Thank you in Advance xx

5 Replies
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Hi 🙂 You may find that you have more opportunity to contact parents in a similar position on one of the Facebook groups. On Facebook search ‘Pediatric Cerebellar Atrophy Support’. This is a closed group. 🙂xB

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Thank you so much, I will do that xx

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I’m so sorry to hear this it must be so worrying for you , I have no experience with such a young child and ataxia, there are so many types of ataxia, one of them is caused by gluten intolerance so it could be worth persevering with that? A good healthy diet with no junk and refined sugar can only be of benefit , you might find Anthony Williams ( medical medium) books helpful, I pray she gets well soon

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I have SCA1, but can only imagine how dreadful it must be to have such a young child with Ataxic symptoms. It sounds as if Gluten might be the problem and if it is then your daughter will need to have a completely gluten free diet to stop the symptoms, a simple blood test would be enough to establish whether gluten is the problem. If you eliminate gluten from your daughters diet then the intolerance won’t show up in the blood test, so you need to ask your Doctor to do the test as soon as possible.

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Please share your story on the Parents with Ataxia closed Facebook group - one of the members might have had a similar experience. Richard

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