Hi everybody, I was wondering if you could let me know what your ataxia symptoms are or how you feel in general. Are you in pain? Nauseous? Dizzy? My 21 month old has been diagnosed, although tomorrow we are seeing a specialist in paediatric MS, so I'm scared they are going to change the diagnosis. However, 3 months ago they said she had acute cerebellar ataxia, and it should go away in a few weeks, then a few more weeks. She received three days of steroid treatment and 2 days of IVIG which made her vomit multiple times both days and even after the treatment. She doesn't talk which I'm told could be caused by the ataxia as well. I really am just concerned because she can't tell me how she feels. She wants to be held all the time or she likes to hold hands while trying to walk and has meltdowns if I insist on getting her to crawl or use a walker. I feel bad not knowing if trying to walk causes pain or dizziness. She seems to be worse in the mornings as well, often bangs her head on her crib while rushing to try to stand up (by pulling herself up on the rails) So sorry for the long post, just trying to get a better understanding of the symptoms without reading anymore medical journals. Thank you for any insight you might be able to provide.
I am so very sorry to hear this. My heart breaks for you. I didn't realize that they could get it that young. I really, really hope that the treatment they gave her works, and everything will be fine. Head up, Mommy, I am praying for her. Jenny~
My heart goes out to you with your little one. I thought this particular article might be of assistance to you as you are trying to figure this all out. Thing is, that this type of Ataxia can be brought on by other things including MS. http://www.nytimes.com/health/guides/disease/acute-cerebellar-ataxia/overview.html
Our 10 year old was diagnosed last year with Spino Cerebellar Ataxia, which is a genetic form of ataxia, not an aquired type like your child's. We adopted her at age 7, and she was unable to speak intelligably. She was diagnosed with Apraxia, but we kept searching for other conditions, because she had cognitive delays, emotional issues, motor and coordination issues, lethargic especially in the afternoons as well. No pain or neuropathy, thank goodness, but many of those with ataxia have that symptom as well. She had genetic testing, and that's when we were given the SCA DX, which unfortunately is not a curable variety.
I pray the treatment your Docs gave your little one, do the trick, and that she comes back negative for the MS too. Just know that you have folks out here that are sending positive wishes your way, and are here to listen should you need to vent. Hugs and prayers sent your way.
I was diagnosed with cerebellar ataxia five years ago and I constant knee and leg pain. My balance and walking is terrible b/c it hurts to walk. My coordination is bad al so and I have in Voltaren movements and also some jerkyness
Thank you so much everyone! I appreciate your kind words and find this so helpful, looks like I'll be carrying her around a bit more often, but that's ok. Fingers crossed, getting another MRI Wednesday....
Dear Elise's Mom, My heart goes out to you and your little one! I'm a 61 year young woman diagnosed with Sporadic Cerebellar Ataxia (unknown cause/ symptoms 24/7) eleven years ago (at age 49), although I had very small symptoms starting about eight years before diagnosis. My ataxia effects my gait/balance (I use a quag-cane when I leave my home to prevent falling, but am able to walk, carefully, in my home without it), dexterity (writing/printing/fine motor skills), speech (slurred), swallowing (sometimes coughing/choking) and vision (sometimes blurry, especially my left eye). As a rule I don't have any pain, sometimes my back and neck hurt, although I attribute this to my posture. As a rule I don't get dizzy or nauseous. I do have some intention tremors in my fingers/hands, but not all the time. Anyway, I hope you get more answers about your little one! Bless you...,;o)
I sincerely wish that Elise has a wonderful life and this 'video' shows to never give up hope..Ozzy...
http://forum.livingwithataxia.org/video/cerebellar-hypoplasia-rehabilitation-holly-s-story
So sorry. The uncertainty is hard. Luckily I experience no pain except occasional cramps. I move slower than I used to but I am grateful that there is no pain in the body. If I touch surfaces I know where I am. I do not experience dizziness like vertigo. My balance is off 24/7 and worse when I am tired. I fatigue easier now. I was diagnosed 2 years ago but started having symptoms 10 years ago. I have a diagnosis of cerebellum ataxia with an underlying cause of MSA. I went to many doctors before I found a good neurologist who referred me to Mass General in Boston, Ma, USA. I was also tested for MS but that was ruled out.
Thank you Rose! That makes me feel better knowing you don't have pain or vertigo symptoms. I can't believe how many people suffer this disease, and I had never heard of it before. So sad. Hugs to all of you xo
rose said:
Dear Elise's Mom, My heart goes out to you and your little one! I'm a 61 year young woman diagnosed with Sporadic Cerebellar Ataxia (unknown cause/ symptoms 24/7) eleven years ago (at age 49), although I had very small symptoms starting about eight years before diagnosis. My ataxia effects my gait/balance (I use a quag-cane when I leave my home to prevent falling, but am able to walk, carefully, in my home without it), dexterity (writing/printing/fine motor skills), speech (slurred), swallowing (sometimes coughing/choking) and vision (sometimes blurry, especially my left eye). As a rule I don't have any pain, sometimes my back and neck hurt, although I attribute this to my posture. As a rule I don't get dizzy or nauseous. I do have some intention tremors in my fingers/hands, but not all the time. Anyway, I hope you get more answers about your little one! Bless you...,;o)
Ozzy this video is so inspiring!! That little girl has done amazingly well, definitely gives me hope, I've been picturing her with a walker for the rest of her life. Thank you so much!
Ozzy said:
I sincerely wish that Elise has a wonderful life and this 'video' shows to never give up hope..Ozzy...
http://forum.livingwithataxia.org/video/cerebellar-hypoplasia-rehabil...
Dear Elise's Mom, You're so welcome! I certainly can relate to you never hearing of ataxia, as before I was diagnosed, I had never heard of it either! But, as you can see now, there are many people with different types of ataxia, and for different reasons, some known, some not (like mine). I hope it's reasurring to you to know your little one is not alone in her journey! And I sincerely hope you get some answers you deserve!!! Hugs ;o)