dd diagnosed with frontal lobe epilepsy - looking for support & advice, pls!

[scaryboo]

After dd(8)'s diagnosis following 6 days of tests & observation at the hospital, the docs sent us away with a prescription & told us we'd be getting notice of a pre-arranged follow-up appointment in the post. That was 9 days ago & she's still having some convulsions during her sleep but much milder. Dh & I are still in shock. I feel a bit guilty about not be able to 'get over it' as there are far, far worse conditions (should I even be on the SN thread?) but I think I need some support. The neurologist was kind but extremely busy & so I can't just pick up the phone to ask her a question. Can anyone help? thx

my daughter has bi frontal lobe epilepsy aswell. She has only ever had one tonic clonic seizure during the night (which she was hospitalised for) and few smaller absence seizures all this year only. She is also 8. Luckily medication seems to be controlling it (she has crushable sodium valporate tablets) I presume your dd is having breakthrough smaller seizures because her medication is being increased slowly atm?

Can you ring someone and ask for some support off the epilepsy team?

I have felt rather alone about it all aswell. Epilepsy team havent even been in touch. My paed just said to ring 999 if she had another seizure and to administer rectal diazepam if the fit latest longer than 5 minutes (she showed me v briefly how to give it)

The thing I felt with the epilepsy is it is something I have always been frightened of and it was just a huge (and rather dramatic) shock. Over the last few months I have got used to it though. The paed also said it is a usual age for girls to develop epilepsy because they have a hormone surge those damn hormones

Filz, my savior! So glad to know that I'm not alone. We're expats living in Switzerland so no 999 or epilepsy team. Dd is on Tegretol (Carbmazepin) & a tranquilizer called Urbanyl to take just before bed because she's afraid to go to sleep. The trank is temporary & not terribly efficient because she still fights sleep & begs me to stay with her until she falls asleep. Another new behavior (side-effect of meds?) is moodiness & anger. She will shriek & scream if anyone or anything annoys her. Not all the time but still. Her little brother gets it in the neck.

I only have experience of sodium valporate (It is apparently the best medication to control this kind of epilepsy btw) She was having the liquid which is FULL of e numbers and her behaviour has been awful since she started on it. We have just swapped to the tablets and they are additive free. Its too early to say she is better on them, but it does seem that way.

The paed is reluctant to say whether the behaviour is caused by the medication (likely I think) or whether its caused by the epilepsy itself. I find it all quite overwhelming at times. I even worry she will have a seizure whilst at school (1o miles away) and things like that. Its such a shock isnt it?

dd has severe epilepsy and we don't get an epilepsy team or nurse either. Does anyone?
Sounds like your dd is having med side effects. Tegretol is pretty bad for that. I think we've gone through 10 meds in 4 years trying to find one that works!
There are various emial groups for support - there's a web site - parents of kids with epilepsy UK - pokwe - they have an email group too.

Scaryboo: Sorry that you are still feeling in shock. Epilepsy seems to make everyone feel the same way. I am sure I can speak for everyone who has a child that suffers from seizures that we know exactly how you feel.

NMC: we must be lucky to have an epilepsy nurse.

DD is on Tegretol Retard( nice name for slow release tablets) she used to be on the liquid form but it made her very drowsy, the tablets are much better for her even if she sometimes chews the tablet.

Hi my daughter is 6 and was diagnosed with epilepsy nearly 2 years ago. i am still in shock but learning to live with it. Luckily she only has absences. She is on sodium valporate liquid. her behaviour is quite bad - very immature, didn't make the link to the E numbers in her medicine! It has affected her learning at school but now that she is onher medication she is beginning to pick up

My DS was diagnosed with epilepsy in the summer and is also on tegretol. He has night time convulsions, and these continued when he began medication. It was only once he had been on the full dose for a month or so that we have seen the seizures stop - it took 2 months to get him up to full dose. His behaviour was awful for the first few weeks and he was exhausted, then he seemed to adjust and now he is better than he has ever been.

My DS also has AS, but the epilepsy diagnosis really knocked me for six - I just couldn't get my head round it. 6 months down the line I feel alot better about it and the medication is working well for him.

Give it time, and believe me the shock will subside. I hope the meds work as well for you as they have for us.

Hi my DD is 7 and like yours julier1 only has absences, also DX about 2 years ago, she is on ethosuximide liquid took us a while to find a medication that worked for her and it is a shock, which does get better in time.
Having lots of behaviour problems at school at the moment and your comment abour E numbers in the medicine has got me wondering never really thought about it before it could be the reason or part of the reason she is having problems.

Of course you should be on the SN thread Scaryboo all sorts of mums with kids with allsorts of problems on here everyone helps each other out they are a great bunch i havent been posting very long and it has really helped me no end thanks everyone x

Thank you all! Dd went back to school yesterday & came home all smiles. She seemed v. content - went to ballet, did her homework, none of the usual bolshy "I don't want to/I won't do it". She's on the full dose as of today & I got word of the appointment with the neurologist, scheduled in a week's time.

Today she's exhausted. Pale & listless. This is so scary! Is the meds? Is it the epilepsy? I can't reach the neurologist to ask her. Frustrating, to say the least.

Hi. Sorry about your DD being unwell today. Re all the refs to epilim/sodium valproate liquid/syrup, my DS now has epilim in granule form called EPISENTA 1000mg-24hr release from Beacon Pharmacueticals. They are great-no sugary liquid, E Numbers or crushing tablets. He is also on Buccal Midazolam for his emergency med. I thought they were phasing out administering rectal meds? Hope it helps. x

Try not to worry my DD used to fall asleep sitting at her table at school when she was first on full dose of medication and she would sleep for half hour at a time and no one could wake her, she would be completely out of it, i remember it took quite a long time for her body to get used to it .

MONSTERMANSMUM thats interesting never knew epilim came in granule form what a good idea.

Hi scaryboo. Sorry to hear you're having a rough time.

If I remember correctly it took me a while to settle down on Epilim (controlled the seizures immediately, but moods).

I'm on Lamatrogine now, and haven't experience any side effects this time.

Good luck.

Hello as well scaryboo. Ds2 (4yo) was diagnosed with epilepsy last Christmas and I found the first few weeks and months very difficult, especially before his seizures were under control. I particularly felt that the NHS medics were quite dismissive of our concerns (and were definitely trying to clear the hospital for Xmas day). We see a private paediatric neurologist now. She is wonderful and I really feel she listens to us and takes our concerns seriously. But then that's one of the things we're paying her for! And I appreciate that the amount we are paying is not an option for most people.

Ds2 is on sodium valproate and lamotrigine and was on clobazam initially as well. We have buccal midazolam for emergencies, which we haven't had to use yet. All his regular meds knock him out quite a lot, when introduced or whenever the dose is raised. He has no other physical disabilities but I have to take a buggy round with me as at some point in the day he will always get really tired and I just can't expect him to walk around. At other times he is hyperactive, and I'm sure this is due to the drugs as well. His behaviour is pretty bad and the SENCO at school has even referred us to a family support team (allied to CAMHS) to help us to deal with it. I have also only recently started thinking about the additives in sodium valproate liquid and may request a change to granules or crushable tablets to see if this helps.

I found the Epilepsy Action website very helpful when I was initially learning about epilepsy and how it might affect ds2 and us. Plus this SN board, and the NSE (National Society for Epilepsy) forum which has a special 'for parents' section, although replies are far slower than on mumsnet!

Hope your appt with the neurologist is good. I always try to make a list of my questions in the days leading up to the appt as otherwise it's hard to remember what I'm concerned about.

Epilepsy Action site, as mentioned by mummypig, has useful information on various aspects.

re hypeactivity, when ds was put on anticonvulsants as a newborn we found out that epilepsy meds supress the central nervous system which perversely in children overcompensates in hyperactivity (I think it is called paradoxal hyperactivity).

In addition the version of his meds they originally gave him was coloured with tartrazin yellow, a major hyperactivity suspect.

BIG trouble. Found out today that dd (who has frontal lobe nocturnal epilepsy) is in critical state because of stress. Since dh was made redundant, tension at home has been overwhelming. Thought we were coping but dd has been showing alarming signs of what appears to be schizophrenia for the past 4 days. Took her to A&E last night (against dh's judgement - lead to physical fight between us, which dc witnessed) & it's not problem with meds but the poor darling is suffering from the constant tension & anger between dh & I. Dh totally in denial but I am scared out of my mind. Is it better to divorce & have anger & tension stopped or for dh & I to have marriage counseling? I would leave dh NOW were it not for the desperation that dc show to have our family stay complete. But dh's constant anger is making us all ill! Please help. Am at the end of my tether.

Sorry to hear this, it must be a very stressful time for all of you. What did the docs say? Do you still love DH, if so then maybe you should work on it and go to marriage counselling. (((hugs)))

ATM, I hate h with all my being. Self-indulgent, control-freak bastard! ds(5) is ill & being treated with twice-weekly psychotherapy, Concerta & Ritalin. dd(8) was diagnosed with epilepsy last October - and hey, surprise, surprise - she has more seizures when she's tired and/or stressed. Currently she's so stressed that she's zoning out of reality. Off with the fairies. Or violently angry, mostly directed towards me. H & I have been having serious marital difficulties for about 18mos. dd & ds desperate to keep us together. I had to physically fight h (& the dc saw EVERYTHING) in order to get dd to hospital last night. I hate him, hate him, hate him.

I would think that is no good for you or your DC to see any form of physical fighting in the home. Maybe a trial separation would do you good? I am sure someone will come along with better advice. Maybe posting this in relationships will get you more advice.

dd currently having an eeg (all night). She had her 1st seizure of the night about 10 mins ago. I'm not happy but at least we now know that her meds aren't working properly.

dh & I will have to have counseling. Am still absolutely furious with him, especially as paed told us both this a.m that I was absolutely correct in taking dd to A&E monday night. In fact, paed doesn't believe dd's aggression, etc are due entirely to the tension between dh & I - that's why dd & I are spending the night in neurology. I don't hate dh but my respect for him is at an all time low.

Relationships always suffer when you have the stress of dealings with a child who requires extra care. I hope you and DH manage to sort things out. Hope DD EEG goes well.