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Old May 8th, 2017, 15:39 PM   1
Sam5154
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My 4month epilepsy and doesn't smile.


My 4month old daughter started having seizures at 3 months, she was born a happy baby, always focusing and smiling. Since her seizures have started she has stopped smiling, never responds to my voice or her name nor familiar with family members yet, unable to roll nor looks around or follows. Rarely she tracks objects. I feel her seizures are not helping with her development and she's like a 1-2 month old baby. I don't feel she is meeting her milestone, she coos sometimes. She is now under a consultant and been given Kepra as EEG showed abnormal yet her MRI is normal. I'm really worried as I have a son with CP and is severely epileptic and he showed abnormality in both scans yet my other kids are normal. My daughter is showing normality in MRI, has anyone's been in my situation and their child has developed well meeting their milestones and gone on to be a happy child. It's hard not to compare when I see babies her age rolling, focusing smiling yet I have a miserable baby that won't crack a smile😭😭😢😢 nor responds to my voice. Plz help I'm going crazy.



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Old May 8th, 2017, 15:55 PM   2
superfrizbee
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Is the keppra controlling her seizures and have they ascertained what type of seizures they are? Is there any possibilty of infantile spasms? You might find more answers in a more specialised epilepsy forum. I believe there a some on Facebook, but if your son has epilepsy perhaps you already know of some? If not I can try and find some out for you? I have no experience of epilepsy (touch wood) but my son does have hemiplegia (cp) so I can sympathise and offer.hugs on the neurological and uncertainty side of things. X



 
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Old May 8th, 2017, 17:30 PM   3
Sam5154
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The results showed focal seizures in her EEG. But her seizure patterns keep changing, started of with staring and lip smacking to jerking turning from red to lips turning blue and with this I believe she is also having infantile spasm, which is worrying. She can play happily under her play gym but then she has a startling seizure which sets her mood off. Will contact the neurologist tomorrow see if they can adjust or alter her meds as it's not getting better but getting worse.



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Old May 9th, 2017, 00:28 AM   4
superfrizbee
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If you suspect she is having infantile spasms have they attempted to control these specifically? If you think she is still having them still and they're untreated you need to take her back to the hospital asap (like today) and get them to start treatment. It is possible to control them fully in some cases, but uncontrolled unfortunately there can be associated problems with development and they're really a condition that needs urgent treaemt to prevent this as much as possible. Very best of luck today speaking to the neurologist. Definitely mention the startling/ possibility of infantile spasms if you haven't already. X



 
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Old May 9th, 2017, 13:35 PM   5
Sam5154
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she is now admitted in hospital, consultant will be down tomorrow, the spasms have increased and shes been very sleepy.



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Old May 9th, 2017, 14:30 PM   6
superfrizbee
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I'll be thinking of you both and sending positive thoughts. I hope you're holding up as best as you can be and get answers and an effective treatment plan very soon!



 
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Old May 16th, 2017, 08:49 AM   7
Jitter
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Does CP or epilepsy run through the family? There's a few things that could be the cause of seizures. CP, epilepsy, Angelman's syndrome, Rett's syndrome etc

Keep your head held high! I'm sure she'll be fine. Many hugs to you! Let us know what the hospital says?



 
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Old May 29th, 2017, 03:22 AM   8
lilesMom
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Hugs hon xxx
My little guy had infantile spasms.
Got control of them with sabril
And they haven't returned
Thank god.
He does still hve daily focal seizures.
But is a great happy little guy xxx
Hope ye r doing OK xxx



 
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