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3 year old epilepsy and global development delays
Wed, 08/06/2014 - 15:28Hiya,
My daughter is coming up to 3 years old and has epilepsy and global development delays. She had her first seizure at around 10 months old and was rushed to hospital. She had a high temperature during the fit but no fever prior. While in hospital she had a second fit and was given rectal diazepam. She fitted for around 25 mins. We were told that it was probably a one off and we should treat the 2 fits as one episode. Her next seizure was on her 1st birthday and she was again taken to hospital. Doctors decided to investigate and over the following months she has a CT, MRI, lumbar puncture, various blood tests, blood cultures, xrays etc and everything came back completely normal. Being a first time mum I hadnt really been aware of when children should reach certain milestones and it was my brother, father of 2, who informed me that he had been worried about her development before the first seizure. We have since been told that she has got development delays globally and may possibly have autism. She has learned to sit up on her own within the past 6-8 months and can stand for a few seconds unaided but is unable to speak, walk or feed herself. She struggles with coordination and may take some time to grab a toy. We have been told that she is at the developmental stage of an 8 to 10 month old despite being almost 3.
Sorry to have written an essay, I just wanted to know if anyone on this site has a child/children who have experienced or are experiencing similar difficulties.
We still have no diagnosis for her condition, doctors are just saying that its likely to be a genetic condition. Anyone have a diagnosis for similar issues?
Any info would be greatly appreciated,
Thanks,
Becki
Sounds like you are on a
Submitted by Anonymous on Thu, 2014-08-07 - 11:27
Sounds like you are on a frontier of what they might know, but if you can push for comprehensive genetic testing, might tell you something. If that ddd study does that and will share the results with you, that would be lucky. Are you in the UK or somewhere else? Are you getting support for yourself? The seizures sound very serious, so if they can't get control, surgery might be her best option, but it seems weird that they don't seem agressive about controlling them and have mentioned surgery. Is there anyone more specialized to refer you to?