Hi Well I am at a total loss as to what is going on with my 18 year old daughter.
About 4 years ago her school reported that she was having blackouts sometimes she fell forwards, sometimes she stiffened, fell back & then began to shake. She complains of smelling things, seeing things, tasting things and sometimes of headpain and not feeling like she's herself She has undergone tests(to check for cardio related blackouts), but in September last year had a device fitted in her chest to check for cardio problems. During the procedure she began to fit quite badly, after this initail fit her blackouts continued, but it has turned out it is non cardio related, although the recordings show extremely accelerated heart rate during these attacks.
She never had another fit until October 1st last year, she blacked out, then a few minutes later she started to twitch, then her whole body stiffened and bent backwards, this lasted about a minute followed by jerking limbs, then she went limp, she also stopped breathing and was rushed to hospital. She had a further fit 3 hours later and in ressucitation was placed straight onto oxygen.
She was kept in for 6 days and was fitting on and off throughout, one fit lasted an hour, and on the day before coming home she had 15 seizures in 4 hours without regaining consciousness, (no tests were carried out for epilepsy, and no scans performed)we were there throughout these 15 seizures and were just told to tell a nurse when one occurred and we were left on our own)and no treatment was given, and this was on the grounds that a neurologist, who had not witnessed any of her attacks and had only read her records, decided it was Non-Epileptic-Attack-Disorder(NEAD).
The day after she came home she woke up then passed out and had three fits one after the other, followed by what we believe is a staring spell, she remained like that for nearly 2 hours, we could get no response from her at all and her eyes remained open but flickered. She was admitted for telemetry and she had one of these spells, but was able to do things and managed to cut up her pyjamas, when the nurse took away the scissors she ripped them up with her fingers, she can be quite aggressive at times, and we were told they still thought NEAD, but as yet they have not witnessed a fit, and we are being told our description doesn't fit so it can't be epilepsy.
Her fits(which look like a tonic-clonic seizure) are getting worse, she has had up to ten of these on the run without coming round inbetween, which is very frightening for us as parents as we know the brain can be starved of oxygen, which brings me to recent events.
Early hours 1st Feb, three big seizures, when she came round we had an 18 year old baby on our hands, she had literally gone back in age, I'd say about 2 years old and she remained that way for 15 hours 15 minutes, we had to do everything, she drifted of to sleep and came round as herself 18 again, we were so relieved we cried, she then went to bed as normal.
She stirred at 3-12am 2nd Feb and was a baby again, she is stayed like that for 8 days and had 2 more seizures during this time(she stopped breathing with the 1st one, husband got her airways open, but we didn't take her to hospital to be told its nothing) while shes like this, she crawls around*if she can move), she can't talk, she lies on her back, legs in the air drinking water from a mineral water bottle like a baby would drink formula and talks baby talk, she's terrified of her own shadow, has further absences and jumps out of her skin if you talk to her or cross her field of vision, she doesn't recognise anybody but us, she doesn't even recognise her brother whose 20.
After the 8 days we thought she would be fine, but at 0-55am(just 4 hours after coming out of it) she drifted to sleep then suddenly woke up again as a baby, we were devastated, seeing our daughter slip away yet again, she came round as normal this morning after 4 days in this state, and we have have a whole day with her as her 18 year old self, but now her hips, & knees keep locking and her toes twist inwards and lock up, maybe its something to do with the way shes been for the last 2 weeks. She has now gone to sleep, but we are terrified about what state she will wake up in.
We are devastated with all this and feel totally useless, but nobody will listen and we are made to feel as though we are not presenting the perfect description of a seizure. To Everybody who has read our daughters story so far, many many thanks, its wonderful to know there are people out there who do care.
Right, I will do my best to cover it all here. The device she has had fitted is under the skin below the front of her left shoulder, it was only put in to ascertain if there was any heart related reason for her recurrent blackouts so all it does is record her heart rhythm and nothing else, which it did each time she had a seizure, cardiologists said highly accelerated during seizure but normal heart, thank god.
Although her blackouts started just over 4 years ago, she had never had a seizure until the day the device was fitted. Apparently in some unfortunate people anaesthetic can trigger seizures, they say she was unlucky. 1st October(the eve of her 18th)she suffered her 2nd seizure, paramedics said tonic clonic seizures, oxygen helped her, but we did not accept that it was definitely epilepsy, as we know it requires a lot more tests etc.
However we did accept NEAD as a diagnosis and vowed to help our daughter through it. The telemetry test was arranged and she went into for 4 days, she had 2 staring spells, 1 for 5 mins & 1 for an hour(but it now turns out from neurologists report that these 2 events lasted 29 mins and then 3 hours), during the second she was focused on her pyjamas and was destructive.
The neurologist said he didn't think it was epilepsy at that time.(the 15 seizures happened after a visiting neurologist(only does clinics at hospital, not on staff) had been to see her and were classed as small seizures, were she is out cold and the body and limbs shake continuously but not violently(the shortest 2 minutes, the longest an hour), at the time we did not know what was meant by \"small seizures\", only now after witnessing the seizures she has now do we understand the difference.
The seizures she has now are very frightening, they only happen after she has gone to sleep or blacks out, so she is normally on her side, her fingers start to twitch, her eyes flicker & it looks like her eyes are rolling, head jerking back, then her whole body stiffens and starts to bend backwards, her fingers twist around each other, her toes and feet twist and her legs bend backwards towards her lower back, she ends up with her whole body arched backwards, and making horrible noises. Then she starts to jerk quite violently(blood & saliva from mouth sometimes & nosebleeds), then her body just goes limp(bladder empties about 50% of the time at this point), normally all over in about 90 seconds.
It is extremely rare that we get her to come round right away and normally remains out cold until the next seizure arrives maybe about five to ten minutes later, she has had a cluster of 10 of these type over a couple of hours, after the tenth one she came round but went straight into a staring spell.
That was a while ago now(Nov), but at this moment she is back in her childhood state which was triggered by 3 seizures at the beginning of Feb, followed by 15 hour child state, 9 hours normal, 8 days child state & 2 seizures, 4 hours normal, 4 days child state, 12 hours normal and now back in child state. She has more absences than ever now. What we do find strange as she would have what we would class a relatively short(2 hours) child state and days of normality, now it has reversed and she has days of child states and hours of normality, during which she is bright and bubbly and the light of our lives.
She is a fantastic artist and now we watch her daubing any old colour in a childs colouring book, its just so sad. When Suzanne was rushed in on Wednesday gone(normal hospital, not neurology), again paramedics arrived, said tonic clonic and treated her accordingly,(the female paramedic begged us not tolet it drop because of the state our daughter was in) she improved once she was on oxygen, bloods were done and infection ruled out, discharged next day to wait and see outcome at neurology.
As we said NEAD accepted, but still feel there is something else not quite right, we were told by neurologist last time that these clusters can be dangerous IF they are Epilepsy, and she could end up NEAD & Epileptic in the future, I just hope the futures not already here(we would prefer it not to be) anyway, thanks to all for listening, we as parents just feel glad we are able to tell people our daughters story.
At this time(22-02-09) our daughter hs been her normal self for 4 full days