#1
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Hi, our son who is 5 now has been suffering fits since he was 3. We are still waiting on doctors testing him ome more he's had an eeg done which was clear and thats it. He's also been to see a doctor at ENT because his consultant (who i may say is useless) thinks he has Benign Paroxysmal Positional Vertigo and they ruled out Positional Vertigo and frankly said they didnt think he had any form of Vertigo at all. Neither do i to be honest but as we have now been referred (finally) to a nuerologist we might actually get somewhere. The only pattern he has is if he plays in water tray at school which is under a light the reflection from the water of the light every time sets him into a fit within minutes of him leaving the tray.
My husbands niece has epilepsy so its in the family but they just wont test him for it.
Is anyone else still waiting for a diagnosis for their child?
Also i'd like to add his fits aren't convulsions either, his eyes go out of focus then sometimes if hes aware its happening he screams then he goes stiff and drops where he is and his eyes twitch from side to side hes paralysed all the time during. He knows whats happening almost all the time during aswell which is upsetting to watch. then hes either tired or very thirsty after but doesnt usually sleep or anything unless he has more than one in a row. He's had upto 12 in one week.
he's blacked out once in school, the teacher seen he didnt look right very pale and clammy so she took him in her arms and he went limp eyes rolled back and then within minutes he sat back up asking what had happened. i took him to a&e and they said it was another seizure of some sort.
Sorry for rambling but im trying to describe to my best ability how it happens.
So i would like to know if, anyone has suffered something similar with their child, or if your still awaiting a diagnosis?
#2
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Waiting for a diagnosis can be a long and hard process and can feel like no-one will give you answers at all.
Sometimes in all honesty its difficult to get a diagnosis as the doctors dont know so its very frustrating.

Its good news that you have been refered to the nuerologist when is this appointment?
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#3
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It's supposed to be wednesday 13th july but theyve had to cancel and ill recieve new appointment soon. we have been waiting a long time now since january last year we have been going to hospital and still no further, its frustrating! we will get there eventually i know but its not knowing and having no treatment and having to try and find things he cant do to prevent a fit coming on. Also school aren't good as they leave him unsupervised all the time and a five year old classmate had to find a teacher the other week as kenzie was on the floor unable to move in a fit and his friend had to go find someone. i wasnt happy x
#4
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My 6month old daughter has had about 5 seizures, shes 6months old and her eyes roll to the back off her head and she clenches her left hand and shakes it. It lasts for about 5minutes then she just snaps out of it. Its horrible and so scary. She is not smiling and cant lift her head up. Im so worried and cant stop getting upset. We went to see neurologist on Thursday and my daughter is having an MRI and blood tests done in 4-6weeks. Im petrified. xxx


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