Developmental delay and epilim - any experience?

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Hi, I'm new to mumsnet and can't believe how helpful and supportive everyone is. Wish I'd joined ages ago! My DS is 25 months and has developmental delay (undiagnosed). He was having absence seizures from around 4 months after going into hospital with bronchiolitis, and at 9 months he had a febrile convulsion, when concerns were expressed over his floppiness and slow development (couldn't sit up or handle toys). DS was put on epilim (sodium valproate) -what now seems to me a very high dose - to contain the fits and supposedly help his progress. With the help of physio he has made very slow progress over the past year, but still had low tone and couldn't move unaided in July this year at 22 months. In September at age 24 months he was developmentally between 9-13 months of age, most markedly behind in his fine motor skills (he hasn't yet developed the pincer grip properly), most ahead in his comprehension.

DS has always slept an extraordinary amount and had back to back colds, flu, ear infections and recurrent bronchiolitis and asthma. He was always groggy, tired and unwilling/unable to do anything except sit in front of the TV. He only really had 2 0r 3 wakeful hours per day. I have had all the worries, anxiety and panics that other mums express here.

Three months ago, DS came off the epilim. He has had no further fits, and has been discharged from neurology. But he has also come to life. Everyone says he is like a different child. He has made more progress in 3 months than in the past year. He is now crawling, pulling himself up onto furniture and cruising and exploring his environment and handling toys (albeit still clumsily). I had thought he was tactile defensive because he wouldn't touch anything, but now he is excited by everything around him. It's like he has woken up. He is now nearly walking, and has started babbling and copying words although his physical skills are "competing" with his verbal ones and he hasn't said much lately. He also has been diagnosed recently with long sightedness and has been prescribed glasses, which seem to have helped a lot.

I just wondered if any other mums have had a similar experience with developmental delay and epilim?

Hi Pages, welcome to mumsnet

It sounds as though you have had a tough time of it recently. I don't have any experience of epilim used for children, but take it myself. A result of that was my oldest daughter was born with valproate syndrome, which included developmental delay. Have you tried researching the side effects of children on epilim online?

You say you thought it was a high dosage that your ds was on, would you mind saying what the dosage was?

hello and welcome

i have no experience of epilim, but have experience of global development delays and hypotonia (low muscle tone). My daughter has low muscle tone and it does affect her gross motor control. She was 9 months to sit, 16 months to crawl, 23 months to walk. Hypotonia xcan also be the root of alot of chest infections etc. as the muscles are that lax the child cannot get rid of mucus so easily. maybe your son just had low muscle tone with no underlying factors and now it has improved so has his development?

Hi pages. No experience of epilim either I'm afraid but my dd is on other medication to control epilepsy. From what I have picked up it would be possible for the epilim to have some effect on your ds's development. When our dd was first put on medication we had long discussions with our Paed Neuro about the pros/cons of medication v seizures because of this risk of the brain being 'dulled' at high doses.

But I guess it is hard to know.

Lou33 - don't know if you have seen the article on www.epilepsyaction.org re valproate and pregnancy? a new study I think linking it to development delays

Pages, the organisation heartinthecountry mentioned, Epilepsy Action, may be able to help.
No direct experience of Epilim either (I developed epilepsy as an adult) but my friend had an allergic reaction to epilim that was misdiagnosed by consultants for his entire childhood. When he came off Epilim he was a different person ? as if his brain had suddenly been switched on. Throughout his childhood he was seen as 'educationally subnormal' (that was the phrase used then). But it turns out it was the Epilim doing that to him. He's now 1,000 times better and we hope he'll be able to live a much more normal life. This is said to be a very rare case (but how does anyone know, if Nicky was so woefully and completely misdiagnosed presumably there could be other cases neurologists just haven't noticed?).
If there is any need, in future, to reintroduce epilepsy drugs, I would talk very seriously to the doctors about using another drug, not Epilim. There are alternatives.
My friend, Nicky's, case, made front-page headlines in the Daily Mail (that's why it's OK to tell you his name). I'll see if I can find a link for you.

Hi and welcome

again no personal experience but just wanted to say hello

sounds like you've been through it a bit, but its good to hear that your DS is coming along in leaps and bounds .. you must be stunned at the difference

Hitc, thanks for that.

Makes me and , as we grilled my consultant about side effects etc when i found out i was pg, and he categorically denied and syndromes or side effects were connected to epilim. We found out much later that this was a load of old tosh, btw, and have tried twice to sue but got nowhere.

They increased my meds by 50% when i was pg.

That is terrible Lou . Don't really know what to say. I can only begin to imagine how it must make/have made you feel. Hopefully at least reports like this may stop it happening to others but small compensation for you .

Lou, that's outrageous . Sorry, hadn't read all your post before. How old is your daughter? Just that I commissioned an article on pregnancy and epilepsy something like three years ago, and the link was absolutely clear then (this was for a serious, specialist publication). Your consultant was clearly negligent.
How is your daughter? Assume you've changed your meds? I was very lucky, happened to live next door to a tertiary centre when I was diagnosed so they put me on Lamotrigine straight away because I was an adult woman. Am absolutely appalled that someone deliberately kept you on Epilim when they knew you were planning a pregnancy. That's evil.

Lou, if it helps at all, Tim Betts is the leading medical expert on pregnancy and epilepsy, based in Birmingham ? if you need an expert witness for your case, he's the one.

she is almost 13 now. The effects of epilim were known many years before I was taking it, but the docs hid it from us. A paed consultant that dd1 was assigned to , from the same hospital as my neurologist, finally took us to one side, and gave us this info. Obviously we were devastated, especially at the time she was telling us that our daughter may also be blind and deaf (she isn't). We changed hospitals, got a solicitor specialising in medical neg claims, got it taken to a barrister, who said that although she had suffered as a result of the epilim he felt it was not enough to warrant going to court. Dh lost his career as a result of all the time he had to take off for appointments, he was earning 40k in 92, and in his line of business , being gone for only a few months means it's virtually impossible to climb back in. About 2 years ago we tried again after hearing of a solicitor who was suing the drugs company on behalf of a group of women, so they asked us to send our papers in. Never heard anything again. Got the files back from them only by calling up and being quite stroppy about it. Too disheartened to ever try again, and dd is not suffering any major health problems now. It doesn't compensate for what we lost then though, or the thought that we didn't know what the outcome would be for dd for the first couple of years of her life, especially watching her as i was told she was in heart failure when she was a few weeks old, alone, because dh had to go and work in spain to get some work .

Sorry for rant.

God, there is no way you need to apologise for your post. Can't imagine what you have been through. B*stard consultant.
The really awful thing is that there are still plenty of docs leaving women of childbearing age on epilim - another friend suddenly developed epilepsy in adulthood and bl**dy GP put her in epilim. This was a woman with three small children, including a baby. What the hell was the tosser thinking? Took her over a year to see a neurologist. Makes me realise how bloody lucky I was.

I have a friend still on it. She is thinking about starting a family, so we have been talking a lot about epilim recently. I'm back on it now, but only because I have been sterilised. I refused to take any meds while I could possibly get pg after dd1, as the risk of side effects from the meds was higher than me having a fit.

Thanks for the advice. Lou, what a terrible time you've had. I'm so sorry. You say your daughter no longer has any health problems, but has she now caught up developmentally? I have heard that other mothers are suing re valproate syndrome, I bet you have a case if you can find the strength to carry on. DS was on 10 ml per day = 400 mg. Usual dose for each kilo body weight (according to manufacturer's leaflet) is 20 mg and DS was 9 kilos when he started it, so 180 mg would have been the right dose. Neurologist when challenged said you can have up to 3 x this amount. I was so vulnerable when it all kicked off that I simply trusted everything that the docs told me. I was interested to read that hitc's neuro advised re side effects vs benefits. All our neuro told us was that his hair might go curly and epilim can cause liver damage.

Edam, it was reading about Nicky on the net that inspired me to take DS off epilim, but I never saw the full story in the papers at the time. Would be interested if you can find a link or tell me more as you know him. DS's paed consultant denies any knowlegde of epilim dulling the brain and yet his audiologist in the same hospital told me that children on epilim are "on a different planet". Strange how little this knowledge seems to be shared.

Snmum, I was interested in what you said. I've been told from day 1 that DS has probably got an inherent learning disability. Does your daughter have any underlying factors apart from hypotonia?

Yes, she did catch up, but didn't walk until aged 2.

Pages, I did a search for the story on Mail website but didn't find it. Will have to check details with my sister as can't remember more than the basics. My mother and Nicky's were best friends so we spent a lot of time with him and his brothers. When we were kids we all knew that Nicky was slow, as we saw it; always had to wait for him to catch up and knew that he couldn't do all the things we did and went to a special school. He has two brothers, one a little younger, and the oldest very intellectual so it was kind of obvious even as children that Nicky wasn't developing normally. But I don't think anyone ever explained anything to us, we just took it in our stride and accepted that we'd always have to wait for him. We happened to know a few kids and adults with disabilities so it wasn't really an issue.
Horrified when it emerged a few years ago that this was all medication, and not Nicky's brain at all. He's since had brain surgery and is doing really well, so it's a happy ending. Doesn't bring back all those lost years though.

Pages, after trying twice unsuccessfully I doubt it would get anywhere a third time, and tbh nowadays I have enough on my plate with ds2 and all his med appointments (he has cerebral palsy). I've transferred the energy I would need onto him now

Pages: Welcome. You will find the support here fantastic - such a wealth of knowledge here on MN.

I can kind of relate. My DD developed seizures at about 8 months and they were a kind of seizure that "took everything away". At 10 months she was a floppy little baby who could not lift her head up off the floor and was also groggy/sleepy all the time. She was not put on epilim but was put on another anti-epilepsy med. We did not realise it at the time she was taking it but really noticed a difference when she stopped taking it. When she was on the meds we often felt something was 'a bit off' but couldn't really identify what it was and were just so pleased she was seizure free. When she came off the med her eyes were brighter and she seemed more alert. She did have global developmental delay (GDD) and maybe still does to some extent - she is 4 and a half but has also been diagnosed with autism so maybe the lines are blurred between the GDD and the autism.

I am so pleased for you that your DS 'has come to life' and seems so be making so much progress. Although it has been a bit of a rollercoaster for us I can totally relate and understand your worries and also how wonderful it is to finally see some progress.

I should have mentioned she was weaned off the med 2 years ago now and is still seizure free.

Thanks IG! It is great to hear stories about children with GDD who have caught up (I think you are saying she has, more or less, despite the autism?). It gives me hope. I keep thinking I have spotted an absence seizure and freaking out -they can be quite hard to spot - mainly because I just couldn't cope with him going back on the meds and slowing right down again. Were there any other underlying factors causing the epilepsy or GDD in your DD? What age did she walk, crawl, etc.?

The support and knowledge here is amazing. It is just so good to talk to people who have had similar experiences. I don't know anyone at all who has a child with GDD or epilepsy so was feeling really alone. Thanks a billion everyone.

Pages - Hi!
She has caught up more or less other than the autism. No motor skills issues now - her difficulties come down to speech language and communication now which is our main focus at the moment.

There was absolutely no explanation why the seizures may have started - e.g. they didn't start with a vaccination or an illness - just one day we noticed something was not right.

She had had fairly normal development up to 8 months then the seizures took everything away so at 10 months she was not much more capable than a 4 month old. She did eventually crawl at about 17 months and walked at about 19 months after intensive therapy. Husband quit work to be home with her and was constantly making her exercise. I credit a lot of her progress to the dedication of her daddy. Funny though, she did not even get her first tooth till she was 14 months so I think she is just a kid who will not be rushed and will do everything in her own good time!!

What matters now is that we continue to get her what she needs to progress. It has been a long hard road and is sometimes frustrating but we just try to do our best.

You are definitely not alone, especially with Mumsnet here.
I look forward to hearing more good progress reports for your ds.

I should not really post this but I can vouch for Tim Betts as far as an expert Witness goes...he is lovely and is in fact a neuropsychiatrist.
If you see him no probs.
He also sorted out my AD for me as I take 3 anti-convulsants and he was 'spot on'

Hey Bunglie, how are you? Did you get my message? Funny coincidence that you are also a T Betts fan. He was one of the experts in a report on anti-epileptic drugs and pregnancy that I commissioned. Wanted to see him myself but my PCT wouldn't refer and he doesn't take private patients (great principles, bit of a pain for me, though luckily all went OK anyway).

IG, your DH sounds fantastic. You are very lucky and so is your DD. Thanks so much for your posts, they have really helped me. Funny, though, how many people think that 18/19 months is late walking. I did not walk myself till 18 months, nor did my brother. I wouldn't profess to be the most co-ordinated of people but I did go to university! I guess i should stop bumping my thread up, but just want to tell you all my DS is crawling all over the place, into everything - had to buy a stairgate at the weekend! Sooo exciting. Feel like it's all happening at last, after time stopping still for more than a year. It's a wonderful feeling.

Oh Pages, that's brilliant! So excited for you. Bless him!

Pages - wonderful news about your ds getting mobile. I know exactly how you feel. So pleased for you.
As we all know here on MN SN any progress is so special and something to be treasured (and shared ).