To question my DS's epilepsy diagnosis

[kikaleek]

DS has been in hospital three times recently after having seizures, we have a huge family history of epilepsy and that's basically what they're assuming it to be. They've done every test under the sun, ecg, eeg, blood, urine, lumbar puncture, CT scan and even more. They've all come up with nothing and we've received a letter from the hospital recently basically saying that they're going to repeat all the tests again. Of course I want them to get to the bottom of it so he can get treatment but it was awful to watch him get prodded and poked and when they took his blood and put his cannula in they had applied his numbing cream too early so he screamed and had to be held down for the whole thing. Surely if they all came up blank last time they will again? Isn't there other tests that they can do? Or anything else it could be if all the epilepsy tests are showing nothing. This is in no way meant to be disrespectful to the NHS by the way everyone was incredible when DS was in, particularly the ambulance staff. Just frustrated and don't want to see DS in anymore pain, so AIBU to question this?

Not much to add really other than my dh is diagnosed as epileptic and I know he is as he has both tonic clinic and focal seizures however all the tests he has undergone have come back clear. I spoke to his neurologist about this and he said that sometimes they can't find anything obvious that causes the seizures but still they happen. Are you comfortable with you ds being diagnosed as epileptic or are you worried that actually it might me caused by something else and want all options to be investigated to rule out other conditions?

@whenenoughisenough I'm comfortable with it, it's very likely due to family history etc. It's more the constant tests that I hate as they're awful to see and then he's groggy for days after. I was okay with it the first time as I wanted to see what was going on but to go through it all a second time so soon after seems like a challenge and maybe a pointless one? How long did it take for them to diagnose your DH?

@kikaleek I totally agree with you I would hate to see my ds to go through the tests that my dh had to do. After his first ever seizure they didn't really do anything and then after the second he was started on medication while he underwent various tests these took about 4 months and then an official diagnosis happened however after his second seizure the neurologist we saw in a&e said that after 2 seizures you are considered epileptic.

EEGs didn't pick up my son's epilepsy neither did MRI (initially) however he was treated as such Every time a withdrawal of medication was attempted (minor) focal seizures occurred One paediatrician pretty much called me a liar However when it came to light (through my investigation) that both DS and I had a genetic condition which was linked with epilepsy she changed her tune After that a MRI done under sedation finally^^ picked up areas of his brain on both sides which pointed towards epilepsy and DS The MRI scans were carried out over a space of 10 years - I don't know if it is just the improvement in the images that eventually picked up the abnormalities or if owning to the genetic condition it just became more apparent over time

I have seizures and I don’t have Epilepsy. I have NEAD (non epileptic attack disorder). I was initially being investigated for epilepsy, my seizure whilst having an EEG showed no abnormal electrical activity and I was diagnosed with NEAD instead. Better in one way, harder to understand in another.

my dh attended an epilepsy clinic, where he remained as an inpatient with electrodes glued to his head for a week...as they filmed and recorded his complex partial seizures. but he was an adult and able to leave the glued on bits alone...further tests revealed he was an excellent candidate for surgical removal of a small blood clot which was causing the problem.

I’m epileptic- absence and tonic clonic- three EEGs and an MRI have all come back clear. However I’m diagnosed epileptic after the GP referred me to a neurologist and I had several fits in from him. I’m thirteen years I’ve gone from hundreds of absences a day to 10 months seizure free but any attempted withdrawal from meds causes the seizures to come back.
I’m short: just because the tests are clear, doesn’t mean it’s not epilepsy, especially with a strong family history. If it looks like a duck and quacks like a duck, it’s probably a duck

I have to disagree legally, all my symptoms were epilepsy like, brother has epilepsy. I have Non Epileptic Attack Disorder. You say a doctor diagnosed you after seeing a seizure? But how could he know what was going on inside your brain? Seizures aren’t just epilepsy and you say the EEGs were clear, which are normally the best way to diagnose epilepsy ( or in my case, diagnose NEADS). Lots of people go years with an epilepsy diagnosis when it’s not. The condition isn’t really well known though so many docs jump straight to the epilepsy path.

My 2.5 yr old DS has an epilepsy diagnosis. All his tests came back clear (all the same as yours although he never had a lumbar puncture). He was put on Keppra at 7 months old and within 2 months the seizures had stopped. He’s not had one since though Still has the meds every morning and night. Will start to wean at 3 years.