Guidelines on seizure treatment (Long)

[mummyplum]

Hi everyone, sorry I have not been around. DD has been having seizure like episodes for 3-4 years. They are not what you would call typical seizures, but are becoming more and more 'typical' as she gets older. DD's original paediatrician (who is actually a respiritory consultant) told me that her episodes are neither cardiac related or epileptic, but she continues to have them. DD has had 2 EEG's (one in 2009 arranged after a tonic clonic, one in 2010 due to repeated episodes, one awake and one asleep), these were both normal.

Before the Easter holidays DD had a fit that I managed to record on my phone. I called our local CDC who asked to see DD and the footage. The Dr on duty told me that it was definately a partial seizure of some description and wanted to repeat the sleep EEG and if it is normal DD was to have an MRI. She advised me to take DD to A&E if she had any clusters of seizures or any that lasted a long time - and to inform them of any further fits.
She had further epsiodes, including drop fits and absences, then nothing since.
Until Thursday. DD went on to have an odd episode that I am sure was a seizure. Her behaviour was dreadful for about 48 hours - which is a classic sign for DD. She then complained of not being able to move her arms :( but within seconds her eyes rolled up into her head, she screamed out and then was "asleep" twitching. All in all it lasted for 3 minutes. She slept for an hour afterwards. I followed the advise of the doctor, and rang them. The Dr who was on duty last time spoke to me and was unbelievably rude to me about it all so I had no choice but to speak to DD's paediatrician, who doesn't beleive DD has been having fits!! I told him that she is due to have the EEG repeated and he snorted, well I know that will be normal. I replied, well is it possible for people to have seizures and a normal EEG? He said yes, but he isn't willing to treat her for them as they don't happen often enough and he doesn't think it is necessary!

I am so angry as in my opinion if he isn't sure of what the episodes are, then we should of been referred to someone who can help. Instead everytime there is a whisper of further investigation or referral elsewhere he puts a stop to it. I looked up NICE guidelines on seizure investigations, and according to that DD should have been seen by a specialist centre by now and that EEG's alone should not be used for diagnosis or to rule out epilepsy, which is what DD's Dr is doing. How do I challenge this?? The Dr is definitely not following the guidelines. I feel intimidated by this Dr, he is pretty old school and very well thought of.

I am no expert on seizures I'm afraid as only familiar with the type DD has which aren't anything like what you are describing.
Can you get GP to refer your DD to a paediatrician who is either a neuro paed or at least has a special interest in epilepsy. IME paeds who are respiratory experts know little about unusual epilepsy.
If possible get video footage of any further unusual episodes and make notes of exactly what happened in the run up to it and how long it lasted
Sorry I can't offer any more advice. Good luck

maybe you should ask your GP to write a letter for you? pointing out lack of adherence to guidelines. I have done this with some success in the past when chasing things.

My DS had an EEG which came back normal even though he was having regular absences/seizures. it ended up being probable mycolonic jerks which do look like twiches, like those twitches you get whilst falling asleep, but DS had them all the time. they don't show on an EEG.

Medics can be incredibly blase about seizures.

Hmmm when I was around 8 I started having seizures. I had an old school neurologist who told my mum they will stop in time!! I had many EEGs one came back very abnormal another came back slightly abnormal and about 8 others came back normal! He refused to treat me. My mum demanded a second opinion so drove me a 2 hour drive to different hospital where a doctor said was Definatley epilepsy (she also had video of a seizure) put me on meds and that was that! I'm still on meds now and still have the odd seizure. Good luck

Bigbluebus , Pedalpusher Thanks for your replies. I agree - the GP wrote to him last year and he ignored it! I think i need to go back again and put my foot down, but it never gets us very far. DD's episodes since birth were just her limbs/body turning blue, and she was possibly having some others, but could have been colic. Then she had the afebrile aged 18ish months (blue, vacant, unresponsive, lip smacking, twitchy limbs, for 15-20 mins) This was all put down to a possible heart problem, which has so far been ruled out- other than having a murmur and slow HR at times. Since then she has had many more similar episodes. Now she is older she has obvious seizure activity, absences (eye rolling or just vacant), simple partials - which are prob what she was having as a toddler, and the definate complex partial & drops she has had more recently. The myoclonics have been nasty, she hasn't had too many - one week she had a few of them and smashed her little face on the table one morning at breakfast. I don't know if this rings true for either of you you, but I can always tell DD isn't right. Her behaviour is always off the scale before one and she trips up over her own feet alot the next day or her speech is slurred.

Chundle Sorry that you went through this - seems it is common place to ignore parents! Thank you for posting x

my son's myoclonics always happen at breakfast time, he hasn't smashed his head o the table yet but we have worried he will fall off the chair or choke, but they are quite mild. the seizures come and go but there is definitely some link with behaviour and speech (stammering). DS is awful beforehand, but once we start seeing physical symptoms he is miles better behaviourwise. don't know if you find this. I feel like there is a pattern to it that i haven't worked out yet. I keep a diary and he seems to be getting miles better for no apparent reason. we have absolutely ages between appointments but whilst he is improving that doesn't bother me.

Pedalpusher Yes, DD usually falls off her chair but we could never work out why. Her behaviour definately improves after a seizure (as much as it can with possible ASD) and she stammers more than usually and slurs afterwards. I feel like there is a pattern, I kept a diary for 3 years and couldnt figure it out lol.