Our little girl was diagnosed with epilepsy at 3 months and is now 9 months. They are struggling to get her seizures under control and she is on the fourth lot of medications- at the moment she is on clobazam (Which makes her very sleepy and floppy) and epilim. She is developmentally delayed - by 6 months she could almost sit, was very strong during tummy time, alert, smiley etc but never used her hands appropriately. Since starting on clobazam she is like a different baby - can barely hold her head up let alone sit or do tummy time, no longer smiles very often, is tired, zoned out etc and still doesn’t reach out for things,. We put it all down the medication but after a couple of months we started to see some improvement but she has regressed again . The consultant has said that she thinks it is likely thar there is a neurological/genetic condition that is causing the epilepsy and the developmental delays. As we are yet to find out what the condition is (and apparently may never know ) they cannot give a prognosis or indeed confirm if she will even be able to walk and talk. So far the MRI/EEG and Microarray are clear. We are waiting on the epilepsy gene panel test. It is such a shock to hear that your perfect baby could have potentially life changing complications for the rest of her life and I feel so overwhelmed and lost. I am hoping for some words of encouragement from you amazing mum’s who have been through this. I would also love to hear from someone whose life is so much happier than they first imagined when given the news about their own child. Sorry for the essay.
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Behaviour/development
Developmentally delayed baby with a possible neurological condition
4 replies
Leza1 · 19/11/2020 17:38
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