I am not sure if I am in the right place but various doctors and my daughters physiotherapist and occupational therapist have referred to my daughters movements as ataxic.
She is going to be one on 5th December and cannot sit unaided, cannot crawl, can roll from her side to her back with coaxing. She is making baby babbling noises but we are unsure if her speech is affected but I think it is. Her body twitches and so does her tongue, so it will fit that she will have problems.
Her MRI came back that she has a smaller cerebellum for her age and also that it has been damaged on the left and right side. From the scan it looks like she has tiger stripes on each side - deep furrows. The doctor is looking into what caused this. Has anyone got any idea?
Neither my husband or I are aware of any genetic issues and have no problems. The pregnancy and birth were fine. It’s a mystery. Also very concerning, well bloody scary, pardon the swearing (I could have used something stronger as both my husband and I are in despair). She is though a beautiful, happy baby, interested in learning and doesn’t appear to be cognitively affected but we are of course unsure. Also don’t know if what she has is degenerative.
Scared. Any thoughts would be helpful.
Hmmm, I certainly don't blame you for being scared and in despair. Although my children are grown, I continue to worry about them, as they'll always be my "babies". When you love your children (child), you want the best for them. If they're ill or something is wrong, you wish you can take it on yourself and/or make everything alright. So, I understand! It sounds as though your daughter may have ataxia due to her cerebellum. Ataxia is caused by atrophy in the cerebellum. I was diagnosed about 8 years ago with sporadic cerebellar ataxia (non-hereditary/unknown cause), and although I've had genetic testing, it was negative, so I have no idea why I have ataxia. I was happy my testing was negative though, as I have children and grandchildren. I'm an adult though (58). The only advice I can give is rejoice in the fact that she's a beautiful, happy baby (which I'm certain you do). Continue occupational/physical therapy, as it can be extremely helpful for ataxia. My neurologist has always told me "someday the cause will reveal itself", so hopefully that will happen with your precious daughter! I'm sorry I can't be more helpful, just want you to know I'm thinking of you all! ;o)
Hi Again Donkeymule, That's wonderful that physio. is helping your daughter! I know the future is uncertain, but the future is uncertain for everyone, so you're not alone. I don't think it's related to anything you did during pregnancy, as things happen and we don't know why. Be kind to yourself! No, I have not had ataxia all my life because I was very physically active and athletic when I was younger. As I mentioned before, I was diagnosed at age 50, but looking back, I think I started to have very suttle symptoms in my 40's. For example, I was a long-time snow skier, went out West to ski, and kept falling down. I couldn't figure out why, thought I was just "off" for some reason. As I said before, I have no idea why I have ataxia. I lived a very "healthy" life when I was younger. I continue to eat healthy, exercise and try to get enough rest, as all of those things help my ataxia. I believe your husband will be able to take your daughter to the beach and look in rock pools! You sound like a very loving couple, and your daughter is lucky to have you for parents, just as you are blessed to have her! Ataxia can be managed as you learn different ways to do things. Your daughter is young and will adapt (if need be), as long as her mom and dad do! Try not to worry (I know it's easier said than done), as she will do well with your time and love! Hugs to you all...;o)
Hi,
Sorry to hear about your daughter. My daughter also has ataxia first symptoms were at about 15mths. The cause is unknown. I am sure it is nothing to do with what you have or haven't done during your pregnancy because if it was, I think ataxia would be more common than it is. Your husband will still be able to take her to the beach & please do not be too hard on yourself.
Take care
Pauline.