Staus Epilepticus.

[homestyle]

Hi everyone.
I am new here and look forward to finding some friends here.
It may be unusal to hear from the mother of a 42 year old son but whatever age our children are, if they are sick, they are still your child.

My son began having seizures after surgery for a fractured skull and a blood clot, after having a RTA.
He is my full time carer as I am paralysed with MS.
4 weeks ago he suffered a terrible attack after going into town for the first time for 2 years and some hours later had a Status Epilepticus for 2 hours before being put on a medically induced coma for 3 days, then a further two days.
He was discharged 2 weeks later but had short term memory loss and asking hundreds of questions over and over till I was going crazy.
He is saying things that are not happening and getting angry when I tell him it`s not true.
He is back in hospital as I was almost suicidal but they want him home.
He lives just across from me, is divorced and has his twin daughters from Friday to Sunday (aged 14).

Has anyone suffered confusion like this and is there any hope for the future?
Today he walked home from hospital with everyone searching for him. His dad took him back as we had no medication.

Look forward to any advice.
Many thanks, Christine.

 

[Nakamova]

Hi homestyle, welcome to CWE.

I'm so sorry with all you've got on your plate. I hope you and your family get some relief soon.

Have you spoken to your son's regular doctor or those at the hospital to get a sense of what might be going on? Did your son suffer any injuries during the seizure that may be exacerbating his symptoms? Even without specific injuries, status epilepticus takes a real toll on the brain, as does a medically-induced coma, and the effects on memory can take a long time to wear off. (A cousin of mine suffered a seizure and was in a coma for several months; he remembers nothing of that time. My father suffered a severe head injury in a fall and remembered and talked about things that didn't happen.). Depending on where your son's scarring is and where the seizures originate, they may be affecting his mood and causing the anger and confusion on his part.

If possible he should be evaluated by a neurologist to evaluate his recovery, and consider medication or other treatment.

Best,
Nakamova

 

[homestyle]

Hello Nakamova,
Thankyou for contacting me, it is much appreciated.
As I said in my post, my son was attacked just hours before the S/E. His friend had gone with him into town and was in a pub, but was called home leaving my son alone with a gentleman with not much English. He invited my son home to a `party`.
He took him to a bedsit, locked him in and tried to rape him. My son had to fight to get out of there where he was stabbed 3 times with a fork and suffered severe brusing from numerous bites.
When arriving home he was devastated and CID officers took a statement.
However, the arrested man cannot be further charged as my son has no memory of it and keeps going on and on about Police, prison, as if there is something in his mind trying to get out. If I tell him he has forgotten it within seconds, but I dare not tell the whole story incase it causes another seizure.

That one night has ended life as we knew it for the whole family, his twin girls being devastated as are we.

If anyone else reads this and has recovered from S/E I would welcome a message.

Nakamova, did your families 2 episodes of S/E recover at all?
Best wishes and many thanks, Christine.

 

[Nakamova]

Christine,

I didn't realize the extent of your son's injuries. How terrible for you and he, and your families. I'm so sorry.

He should definitely be getting follow-up treatment from a neurologist and counseling from a therapist familiar with post-traumatic stress disorder.

In my family, neither my cousin nor my father went into Status Epilepticus. My cousin who had a seizure and then prolonged coma is basically fine, although he continues to have no memory of the event. My father didn't have any seizures, just severe head injury followed by issues post-recovery with memory and confusion. While he recovered to some extent, there he would talk about strange conspiracies from time to time. He may have been in the early stages of dementia, exacerbated by the fall.

 

[Rae1889]

I had a really bad status episode, but not as bad as your son's. My seizure lasted 24 minutes and also caused me to be intubated and put into a coma to make it stop.

I have no memory of July 2010. Just a few tiny flashes but nothing more. I have nightmares that I'm unsure are real memories or if they are just made up by my mind.

I had hallucinations for about a month and a half trying to get all the drugs out of my system and have lost a lot of past memories as well. It took me a while to relearn some names and actually how to walk well because the depakote they gave me caused me to lose control of my legs because I was in toxic range. Its been 7 months now, almost 8 and I am basically back to my old self except I now have migraines of an intensity I never had before the day of my status episode.

I sure hope things turn out better. It makes no sense to me how they can tell everyone he is fine when clearly he is not. I agree with Nak. Talking to a neuro and therapsit might help.

 

[homestyle]

Hi Nakamova, I am always pleased to have a message and thankyou for your help and advice.
The hospital won`t admit this may be a Trauma he has suffered, like a shock to the system and I have had to insist he see a Psyciatrist. The NHS in England is crippled and will get worse with cuts being necassary. All they see is, if you can walk or eat, then you`re out of here. I will have to look at seeing a Nuero. privately.
Ontop of all this the hospital have lost his toiletry bag, 2 pairs of shorts/pyjamas, jeans, medic alert necklace, 2 Tshirts and a Next watch. All completely disappeared. I cannot make a complaint as I am so grateful for my son`s life being saved, that`s all that matters.
Thankyou once again for contact. Best wishes. Christine.

 

[homestyle]

Hi RAE1889, MANY THANKS FOR YOUR MESSAGE WHICH IS REALLY HELPFULL. I AM CONSIDERING TAKING A PRIVATE CONSULTATION WITH A NUEROLOGIST. HE HAD AN APPOINTMENT WITH ONE FOR MARCH 3RD BUT YESTERDAY THEY CANCELLED IT SAYING HE HAD SEEN ONE IN HOSPITAL.
ANYWAY, MANY THANKS FOR CONTACT.
BESTWISHES CHRISTINE.

 

[Rae1889]

I would phone back and tell them that if you are the one paying for the appointment that they do not cancel on you for such a frivilous reason.