Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

It makes my blood boil!

18 replies

lou33 · 01/10/2003 20:32

I've copied and pasted an article from the Times yesterday, for you all to read. Am particularly incensed because dd1 was born with hydrocephalus and heart defects among other things due to this drug, and NOONE believed us. I specifically asked the neurologist at the time if there were any associated syndromes with this drug and he said no. Months after dd was born we discovered that there was, and he would have been well aware of it (or should have been as he was a professor and heading his team). We tried to sue them and got nowhere, doctors really close ranks when they hear this sort of thing going on believe me. In fact we used to have doctors mentioning it to us, trying to tell us the drug was not relevant to dd, when we hadn't even told them what we were doing!

Tried to take action again a couple of years ago and still got nowhere, now I see this! Am both sad an angry about it. Rant over, sorry.

Epilepsy drug restricted over birth defect risk
By Oliver Wright, Health Correspondent

DOCTORS have been warned by the Government not to prescribe young women a common epilepsy drug that is known to cause birth defects.
The move comes after The Times highlighted the risks of the drug, which is still routinely prescribed by doctors despite its known side-effects.

The Committee on Safety of Medicines (CSM) said that GPs should no longer give sodium valproate to women who might become pregnant because it carried a greater risk than alternative medicines. A recent study of more than 2,000 pregnant women with epilepsy found that those taking sodium valproate, often prescribed under the brand name Epilim, were almost twice as likely to have babies with birth defects than those on other epilepsy medication.

The study, by doctors at the Royal Victoria Hospital in Belfast, found that women taking the drug had a 7.2 per cent risk of giving birth to babies with spina bifida, heart disease, skeletal and other deformities. Women on another epilepsy medication had that risk reduced to 2.3 per cent.

A group of 20 parents has won legal aid to seek compensation from health authorities, citing negligence. Lawyers believe that many other parents will also make claims. As a result of the concern, the safety committee started an investigation into the drug that has now been published.

It said that women who could become pregnant should not be started on the drug without specialist neurological advise. Women who were already taking the drug should also seek specialist advice about moving to alternative medications. ?The risk of congenital malformations in infants born to mothers is approximately two to three times higher than in the general population,? the report concluded.

?An increased incidence has been demonstrated in infants born to mothers with epilepsy taking sodium valproate. Following a review of the data the CSM has advised that women of childbearing potential should not be started on sodium valproate without specialist neurological advise.?

But some doctors have expressed concern that the guidance contradicts advice due out from the National Institute for Clinical Excellence, which recommends sodium valproate as a first-line treatment.

The doctors said that the greater expense of the newer drugs was more than offset by the cost to society of children born with defects. ?In women it is much better to start with lamotrigine or Keppra,? Tim Betts, a consultant neuropsychiatrist at the University of Birmingham, told the medical magazine Pulse.

?I know they?re more expensive but the cost of a spina bifida baby is about £2 million.?

A spokeswoman for the charity Epilepsy Action said that it welcomed the decision. ?We are pleased that the committee has made this decision, which we have been pressing for for a long time,? she said.

?While we realise that for some women sodium valproate is the most appropriate drug to control their condition, we do believe they should all be assessed by a specialist and their medication reviewed.?

Epilepsy Action says that one in every 130 people in Britain suffers from epilepsy. About 40 per cent are of childbearing age.

The charity runs a helpline on 0808 8005050.

OP posts:
doormat · 01/10/2003 20:36

Oh Lou you must be so angry and you have every right to be.I am so sorry.LOL and hugsxxxx

make an appt tomorrow with your solicitor and take them back to court.Hope everything goes well.

ps agree that doctors close ranks, dont they have any morals.

MABS · 01/10/2003 20:45

Lou - really feel for you. Could you go back to a solicitor now to talk? Not that that's the important thing here, I realise that. So sorry honey xx

fio2 · 01/10/2003 20:49

Oh FFS!!!! I would be sooooo peed off tooSad I agree with doormat go and seek legal advice. Oh poor you lou it must feel horribleSad Glad your d is okay now thoughSmile Just trying to look on the bright side for you but I know how you must feel

lou33 · 01/10/2003 20:51

We have a solicitor, one that is being used by a group of people, but they are crap. Haven't heard anything from them for months, apart from a note saying they had been refused permission to take our case to court, but were asking it to be reviewed. The solicitor we used before that has packed up too .

I'm just cross about the lying over the years when the probs were well documented. I don't want any money, just acknowledgment that's all

OP posts:
fio2 · 01/10/2003 20:55

know what you meanSad at our dd's paed appointment last week he kept saying 'I dont what caused it' and dh said he felt like saying it was the blumin birth you fool!!!Sad

janh · 01/10/2003 21:26

Oh, lou, I would be mad too. This was featured on You & Yours yesterday and they were asking why it's taken so long. I didn't realise you were affected by it.

Have you rung the Epilepsy Action helpline? Might they be able to put you on to a better solicitor?

Jimjams · 01/10/2003 22:29

That's crap Lou No wonder you're mad.

ks · 01/10/2003 22:42

This reply has been deleted

Message withdrawn

lou33 · 01/10/2003 23:32

Janh I think I have run out of steam. It's too hard, and tbh I have enough to do with ds2 and his cp, I don't need another battle.
Dd is 11 1/2 now, its taken this long to get nowhere. I'm sure this is the way many many court cases against drug companies/hospitals etc get dropped, because it takes so long and saps your energy. At the end of the day I am one person fighting a big machine. The little person is only ever successful in films.

OP posts:
robinw · 02/10/2003 07:05

message withdrawn

Davros · 02/10/2003 08:43

lou33, just want to say how awful this must be for you. Do you think you might be able to interest the Press as it is a "hot topic" at the moment? WOuld quite understand if you really don't feel like it though. It really stinks!

lou33 · 02/10/2003 09:54

Robin, it's my daughter, first born, who was affected. The solicitor we are using is one involved with a group of people also taking action, and I got their details from a paper who mentioned the group action a year or two ago, still no results.

Davros, the press wouldn't be interested in dd because to all intents and purposes now she has recovered from the more serious side effects of the drug. It's our quality of life that has been affected, dh lost his career because of all the time he took off to help me and dd, and when you are self employed in the busines he was in , it's almost impossible to rebuild it. He's slowly getting there now finally after 10 - 11 years but it's hard. We lost a very comfortable income, and we struggle now, but that sort of stuff is not a news story unfortunately.

My others weren't affected by it because I refused to take any anti convulsants at all while I thought I might get pg. The doctors didn't like it, but they don't have to face the consequences. The risk of me having a major fit was far less than my children being born with problems, so it was no contest.

OP posts:
WSM · 02/10/2003 09:58

How distressing and infuriating for you Lou. Thanks for bringing this article to my attention as my best friend is epileptic and takes Epilim on a daily basis, she's not ttc or preg but I think it is info she would like to know about.

Thanks, hugs and best of luck.
WSM xx

Jimjams · 02/10/2003 10:47

lou you're right, about little man vs the big machine. The MMR group action is at risk of being dropped as legal aid has been withdrawn.

DH said that group actions generally fail in this country (think they're more sucessful in the States).

So hard as I doubt you'll ever get recognition for your neurologist's mistake ( or for that matter financial compensation for the effect it had on your family's finances).

ThomCat · 02/10/2003 11:28

Lou - coming in a bit late here but just want to scream with you and say how sad and angry I feel for you and other parents in your situation. It's all so utterly exhausting.

lou33 · 02/10/2003 11:49

Thanks all.

Jimjams I agree with everything you say. It just makes me so mad when these faceless suits can take so long to make a decision on a drug that has been known to cause problems for many years , even before dd1 was born. It all comes down to money and profits in the end .

OP posts:
Jimjams · 02/10/2003 13:23

Dh read an article in the legal press about dropping the MMR class action, and said it made him ashamed of his profession (basically the drugs company's have hired the big big boys obviously whilst the claiments have the high street firm).

I don't think justice exists.

fio2 · 02/10/2003 14:13

Our CDC has got piles and piles of patients claiming mmr damageSad

Its the same with all the fat cats, its just about moneySad

New posts on this thread. Refresh page