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Worried about my Toddler ...

Wed, 06/15/2016 - 18:29
Im worried about my toddler ,everyone tells me not to ... and maybe im just a worry wart... History : She was born 3 weeks early as i had Cholestasis, She would have periods where she would stop breathing and they couldn't work out why so we spent 2 weeks in scbu then after she was given the all clear and we went home and she was fine up until she was 1 and a half, then all of a sudden her speech started regressing and she started having periods where she would stare into space and we couldn't get reaction out of her then she'd snap out of it all of a sudden and go back to what she was doing... 6 months later she had a seizure at home for a few minutes, her whole body was shaking and eyes rolling back, drooling etc.. it was the longest 3 and half minutes of my life, she then went rigid for a few minutes then came round but was really out of it and just wanted to sleep . We took an ambulance ride to the hospital where she stayed a few nights and the first night had 4 more seizure like that...where she would have one, they'd medicate her and as soon as medication wore off she'd have another. They then gave her a "loading" dose of keppra (i think the doctor said it was.) This stopped it and we were discharged 24 hours after... Since those seizures her speech started improving from that day, (which could be coincidental) but still isn't up to speed with other kids her age. She still stops what shes doing and stares into space ...Also She has always woken few times a night and would sometimes do this lip smacking thing (like a goldfish) which i never thought could be related until i noticed she did it after each seizure for at least 30seconds -a minute. We weren't given a follow up appointment and they just put it down to "she must of had a virus" ...even though everything they tested for was clear and she had no fever... My question is ... does any of this resonate with anyone ? Do i push to see a specialist? I know i can just leave it and see what happens.., Perhaps nothing.. I just worry about her development and speech, she has terrible tantrums because she has trouble communicating and is difficult to understand ... or am i a worry wart and i should just leave her and hope she gets up to speed eventually.

Comments

No worry wart. Remember

Submitted by just_joe on Wed, 2016-06-15 - 22:08
No worry wart. Remember mothers are to supposed to do what you are doing.those staring spells could be absence seizures. the account you posted before going to the hospital might be tonic-clonic seizures. The ones she had in the hospital could have been cluster seizures which are back to back seizures. You spelled Keppra right and I know a lot about it since I have been on it for about 10 years now.The body shaking is basically a convulsion. Each muscle is moving with all the strength it has so after that has stopped her body is worn out so yes she will be tired.The reason the ER people don't do more is because in a lot of hospitals they do not know about the tests that need to be done to diagnosis epilepsy. Her speech started coming back because the muscles had gotten more energy so it is not a coincidence. The drooling can fit in several different seizures. Her trouble communicating might be helped if she does have epilepsy and like you posted her speech has improved.Yes have her doctor to yours refer you to a neurologist that specializes in epilepsy. Take all the information from the hospital along with the medications they used. If these are seizures then your leaving it as is could do more harm since if not treated most seizures will get more rapid and stronger.The tests the neurologist will do is an EEG if they think it is needed with the other information you give them. The EEG is a brain wave test which shows the electrical activity coming from her brain. The next might or will be an MRI which will show the brain itself. What they will be looking for in the EEG is abnormalities (spikes or waves aka seizure activity, which is not a seizure but what can cause a seizure) If they see abnormalities they then know where they came from. Like I said the MRI is the brain. By knowing where the abnormalities came from the neurologists will look closely at that area of her brain to see if there is anything different in her brain. Just to give you some information my epilepsy is caused by scar tissue in the left lobes of my brain. They found the area on an EEG I fell asleep in. A blow to my head which was hard enough to possibly knock me out causes that scar. So they will look for anything. A brain cell that might not have grown properly. ANYTHING .If they are seizures and she starts treatment then yes her speech and speed can eventually catch up. I hope this helps and she gets the assistance she needsJoe

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