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Our daughter, Mia

Our baby Mia is 1 year old now and the joy of our lives. She has epilepsy which is causing some developmental delays and luckily it’s fairly under control with medication.

She can sit up for 20 mins or so if you put her in that position but she has no idea how to get there herself. Similarly, she can roll onto her stomach from her back but once there all she does is ‘skydive’ arms and legs in the air and moaning until you roll her back.

So as you can imagine walking is probably a long way away. :-)

We’ve accepted that she’s behind and if we’re lucky some of these skills will come in time but the hardest problem is her lack of emotions.

Our baby never cries, smiles or laughs. We hope she’s just a ‘chilled’ baby but in the last year, she’s giggled for about 2 seconds once, smiled and cried all of maybe 10 times.

As emotions are so key to how we operate in society we’d love to know anyone has any ideas. She knows what she wants when it comes to food or if she wants to go on the floor for a wriggle and lets us know with noises. But there’s never a moan for food or a happy face when she sees us. We’ve done a lot of research on this but haven’t gotten very far.

Any thoughts?


Baby Helpline:

Baby Development And Epilepsy, Some Thoughts

I am sorry to hear about your daughter’s problems; it must have been a tough year for you.

Mia’s motoric skills are obviously behind schedule, and from what you write I understand that the doctors believe that do be explained by epilepsy.

You say that your daughter doesn’t really interact or show emotions. I agree that this is a concern. It is good that she shows willpower, but at her age, most babies would be babbling, pointing, laughing, crying and so on.

Have you discussed her emotional and social development with her doctors? I spent some time reading about seizures in infants, and in addition to hitting developmental milestones late, another effect that can occur is delays in cognitive development as well as mood and personality.

An important difference between delays due to seizures and delays due to for example autism-related illness is that once learned there is seldom a regression in an ability for babies that are affected by epilepsy and similar conditions.

Babies who have autism, often lose abilities they used to have, especially between the age of 1 and 2 years.

According to Epilepsy Foundation these emotional and cognitive delays related to epilepsy and seizures often improve when the seizures come under better control, which of course is very hopeful.

I don’t know if you feel that the medication and medical support your daughter receives right now is the best possible. If not, continue to push for more attention and more expertise. Never give up!

Make sure you discuss her emotional development immediately with her doctors, to have them assess whether the delays may be related to her epilepsy and whether it indicates that she should be treated differently in any way – or monitored.

These are my thoughts about her development. I can understand completely that you are hoping that she is only a “chilled” baby, and maybe that will turn out correct, but I personally believe that a “full speed ahead” approach with getting medical attention is usually never wrong when it comes to babies.

If the doctors carry out an evaluation and tell you that there is nothing to worry about, then that is great to know. If there are issues; catching and treating them as early as possible is important.

It warms my heart to read that despite all troubles you are going through, she is the joy of your life. I am sure she can feel that, even if she isn’t really showing it.

Warm wishes,
Paula

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Comments

This Post Has 2 Comments

  1. Chris (UK)

    Mia is now 3 and a half and it turns out no one on the planet knows what wrong. She still can’t express joy or sadness which makes being a parent interesting.

    She can no longer sit, has never walked and is now fed via NG as she’s ‘forgotten’ how to chew and swallow. Trying to get her attention to enjoy anything is a challenge and she has no idea what her hands or arms are for still.

    It’s just sad to see such a perfect little girl completely halted by something that science just hasn’t got to grips with yet !

    We still hold hope but we’re starting to think it’s a false hope. Anyone out there got any ideas on how we can help her ?

    1. sheri balderas

      Hey i just picked up on your post while searching why a baby wouldnt smile. My daughter is 10 months old and the docters can find nothing wrong with her. She never has smiled and this breaks my heart. I want to know why. She is not sitting up yet but is trying she tires very easy. How is your lo now? Any better or have docs come up with nething.

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