Mothers demand an end to epilepsy drug ‘cover-up’

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Oct
2015
Thursday 29th
posted by Faye Lipson in Britain

Women tell doctors to warn patients of its pregnancy effects


MOTHERS who gave birth to disabled children after taking a controversial epilepsy medication met MPs yesterday in a bid to expose a “huge cover-up” around the drug.

Campaigning group Infact wants to force doctors to tell their patients about the high-risk that sodium valproate — better known by brand name Epilim — poses to foetuses.

A huge 40 per cent of children born to mothers taking the drug have neurodevelopmental disorders such as autism.

And 11 per cent are born with major physical malformations such as spina bifida and heart and kidney problems.

Infact is also urging Health Secretary Jeremy Hunt to launch an independent inquiry.

It has learnt that doctors were advised by the now defunct Committee on Safety of Medicines not to tell patients of the drug’s dangers when it was first issued for prescriptions in 1973.

This advice is no longer in force, although Infact alleges that most women prescribed the drug are still not being told of its risks.

Group co-founder Janet Williams told the Star: “So many kids have been harmed by this drug.

“We have got to make it mandatory for the doctors to tell ladies of the risks and give them that informed choice to make for themselves. At the moment, that is just not happening.”

Mother-of-two Catherine Cox, who provides educational support to children affected by foetal anticonvulsant syndrome (FACS), had a child with the condition while taking sodium valproate.

Her second child, born while she was taking a different anticonvulsant drug, does not have FACS.

“It’s been swept under the carpet all the way along,” said Ms Cox. “I asked very, very clear questions [before becoming pregnant] and was told that if my baby had cleft palate it would be unlucky, but they’d be able to sort it. And that was all I was told.”

Emma Murphy, who co-founded Infact with Ms Williams, has five children — all with FACS.

She warned that the drug was now being given out in high doses for conditions such as bipolar disorder.

“They know that it will harm the babies. Women should be told,” said Ms Murphy. “I went through five pregnancies and was told nothing.”

Labour MP Teresa Pearce agreed at the meeting to collate personal stories from victims of Epilim and send them to Mr Hunt in order to put “evidence-based pressure” on him to launch an inquiry.

23rd October – Sudep Awareness Day

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For the majority of people diagnosed with Epilepsy, SUDEP is a huge worry and fear. It certainly is for me. The thought of dying due to my epilepsy absolutely petrifies me so on SUDEP Awareness Day what better day to educate and keep the awareness of this going.

Before you read the facts, here are 2 stories of how SUDEP claimed the lives unexpectedly of loved ones.

Mark : My story is about my friend Julie Hamilton. She had just finished a course of therapy, her anxiety was so high at one point she could not leave her house. She gradually managed to adhere to the Neuropsychologist’s advice and ended up being able to do a day trip to Edinburgh Castle. A huge milestone for her.

All this aside, her Epilepsy was not controlled despite having brain surgery in 1998. She required on-going support from carers and home alarm systems. Despite her positive and fiery attitude to life, she passed to SUDEP on 28 November 2012, suffocating on a carrier bag after a violent grand mal seizure. She always reminded me of Dougal from Father Ted, always had me laughing

Tonianne : We lost our sister Samantha Jane to SUDEP 7 years ago. She’s was 19 year old and left a 1 year old baby behind .
She decided that having a bath was the perfect idea , And has she climbed in. She had a seizure
She slipped and banged her head on the bath with such force it chipped the bath and her teeth she somehow sat up before going unconscious and fell backwards into the water has a result she drowned and passed away.

We always value her life and remember her has a happy, confident sarcastic, A good loving mum and a great sister and daughter.

Who liked to do anything without letting her illness bog her down.

 

What Is SUDEP?

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Sudden Unexpected Death in Epilepsy (SUDEP) is the term used when a person with epilepsy dies without warning and where the post-mortem fails to establish any other cause of death.
For some people living with epilepsy, the risk of Sudden Unexpected Death in Epilepsy (SUDEP) is an important concern. SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes.1 Studies suggest that each year there are about 1.16 cases of SUDEP for every 1,000 people with epilepsy, although estimates vary.

Risk factors for SUDEP
• Uncontrolled or frequent seizures
• Generalized convulsive (also called tonic-clonic or grand mal) seizures1
• Seizures that begin at a young age.
• Many years of living with epilepsy.
• Missed doses of medicine.
• Drinking alcohol.

 

Steps to reduce the risk of SUDEP

If you have epilepsy, ask your doctor to discuss the risk of SUDEP with you.
The first and most important step to reduce your risk of SUDEP is to take your seizure medicine as prescribed.
Other possible steps to reduce the risk of SUDEP may include
• Avoid seizure triggers, if these are known.
• Avoid drinking too much alcohol.
• Learn how to better control your seizures with epilepsy self-management programs.
• Get enough sleep.
• Train adults in the house in seizure first aid.

e0bba9cd03b8183fe1cb00dda46b0d5dThank you to Mark and ToniAnne for sharing your stories

Disabled girl sues doctor and psychiatrist for negligence

 A GIRL suffered serious injuries at birth due to negligence by a psychiatrist and a consultant obstetrician who treated her mother during her pregnancy, it was claimed at the High Court yesterday.

It is alleged that when the mother learned her unborn child was disabled, psychiatrist Professor Patricia Casey initially advised that the woman’s options included going to England for a termination.

However, it is claimed that she later told the expectant mother it would bother the woman for the rest of her life if she did so.

Both defendants deny the allegations against them.

It is alleged Rebecca McGillin, now aged eight, was exposed to a risk of injury as a result of the failure of Prof Casey and consultant obstetrician Dr Mary Holohan to properly assess the nature and type of prescription drugs being taken before and after pregnancy by her mother Lisa Glynn McGillin.
Prof Casey had allegedly diagnosed Ms McGillin some years earlier as having mild bi-polar disorder.

It is claimed there was a failure to give proper advice about the effects of drugs, including the drug Epilim which is primarily used to treat epilepsy but is also effective in treating depression.

It is also claimed that Prof Casey, who had treated Ms McGillin since 1994, and Dr Holohan failed to ensure their patient was counselled properly in relation to her pregnancy in 2000 and failed to properly communicate with each other about the management of the pregnancy.

It is alleged both defendants, following the diagnosis of pregnancy, failed to stop the “high dosage” of drugs being taken by Ms McGillin and failed to properly monitor her and to assess the medication best suited to her needs.

Rebecca was born on April 10 2001, when she allegedly suffered cognitive and motor injuries.

It is also claimed that an ultrasound scan performed on the child’s mother at 12 weeks, on January 11 2001, revealed a flexion deformity and asymmetric growth retardation.

A repeat scan on January 22 confirming those findings.

Lithium

Following the January 11 scan, it is claimed, Ms McGillin contacted Prof Casey saying she would not be able to cope with a handicapped baby.

It is alleged Prof Casey advised Ms McGillin that she could terminate the pregnancy in England.

It is further claimed Prof Casey advised Ms McGillin three days later that Ms McGillin would be too distressed to follow through with a termination and it would bother the mother-to-be for the rest of her life if she did so.

The proceedings by Rebecca McGillin, suing through her father Barry McGillin, of Gainsborough Avenue, Malahide, Co Dublin, opened yesterday before Mr Justice John Quirke.

The case is against Prof Casey, practising from the Mater Misericordiae Hospital, Dublin; and against Dr Holohan, practising from the private clinic at the Rotunda Hospital, Dublin.

Prof Casey says she does not accept Ms McGillin had accurately or fully set out her medical history and, in particular, the ante-natal history of Rebecca.

She denies Ms McGillin informed her in July 2000 she was pregnant or that she instructed the patient at that time to stop taking Lithium and to continue taking other medication, Prothiaden and Epilim.

Prof Casey also denies Rebecca suffered the alleged injuries and claims that if she did so, it was not due to any negligence on her part but was caused solely or contributed to by the negligence of the child’s mother.
Risks
She alleges Ms McGillin failed to attend appointments on October 16 2000 and November 22 2000, and failed to have any regard for her own safety and that of her unborn child.

Without prejudice, Prof Casey also says she did provide certain care, treatment and advice to Ms McGillin and did so at all times with due professional skill, care and diligence.

Dr Holohan also denies the claims against her, pleads she is a stranger to the alleged psychiatric symptoms and treatment of Ms McGillin, and denies that she advised Ms McGillin that taking folic acid would eliminate any risks attached to the use of Epilim during pregnancy.
The hearing continues.
Irish Independent

Women With Epilepsy ‘At Greater Risk Of Complications With Pregnancy’

A picture of a pregnant woman's abdomen, with her holding the top and bottom of her bump. Ref: www.dreamstime.com

A new study has added to the body of evidence demonstrating the increased health risks experienced by women with epilepsy.

Published in JAMA Neurology, the research from the Harvard TH Chan School of Public Health in Boston examined obstetric outcomes including maternal death, caesarean delivery, length of stay, preeclampsia, preterm labor and stillbirth in a retrospective study of pregnant women identified through US hospitalisation records from 2007 to 2011.

Nearly 4.2 million delivery-related discharges were included in the study group, with 14,151 of these being women with epilepsy.Watch Full Movie Online Streaming Online and Download

It was observed that women with epilepsy had a risk of death during delivery of 80 mortalities per 100,000 pregnancies – much higher than the ratio of six deaths in 100,000 pregnancies seen among women without epilepsy.

Although this data lacked information about the ultimate causes of death during delivery, the evidence indicated that women with epilepsy were at increased risk of a variety of adverse outcomes, including preeclampsia, preterm labour and stillbirth.

This patient group also generally required greater amounts of care, including an increased risk of caesarean delivery and prolonged hospital stay, regardless of delivery method.

The authors concluded: “Regardless of the specific cause, the point that women recorded as having epilepsy have an increased risk of mortality remains a clinically relevant message suggesting that increased attention should be paid. Future research is needed to determine the specific causes of mortality and how interventions might improve outcomes.”

However, they also pointed out the fact that the risk of a mother dying during delivery remains extremely low even among women with epilepsy.

Further research is now needed to understand the mechanisms underlying these risks in order to devise specific ways of minimising the issue and ensuring women with epilepsy are no longer subject to this danger

 

http://www.epilepsyresearch.org.uk/women-with-epilepsy-at-greater-risk-of-complications-with-pregnancy/

Taking Certain Antidepressants During Pregnancy ‘Raises Risks’ Of Babies Suffering Birth Defects

Antidepressants such as paroxetine or Prozac taken during pregnancy have been associated with an increased risk of birth defects.

Researchers in the United States focused on selective serotonin reuptake inhibitor (SSRI) antidepressants, which they said are increasingly being used by women of reproductive age and during pregnancy.

They analysed women who took citalopram, escitalopram, fluoxetine (Prozac), paroxetine or sertraline at least once between the month leading up to conception and the third month of pregnancy.

The team said that while they found “reassuring evidence” for some SSRIs, some birthdefects were up to three and a half times more likely to occur in babies whose mothers took paroxetine or fluoxetine.

But they said that the absolute risks for these birth defects still remains low.

sad pregnant woman

The research, which is published in the British Medical Journal, analysed 18,000mothers of infants with birth defects and 10,000 mothers of infants without birth defects, born in the US between 1997 and 2009.

A number of specific birth defects have been described in previous studies of women taking SSRIs, and these were analysed further in this latest research, which was led by the National Center on Birth Defects and Developmental Disabilities in Atlanta, Georgia.

The birth defects were defined in the US National Birth Defects Prevention Study (NBDPS), which includes more than 30 categories of major birth defects.

Sertraline was the most commonly used SSRI, with around 40% of the women taking it, but none of the five previously reported associations between sertraline and birth defects were found.

They said that for nine other previously reported associations between maternal SSRI use and birth defects in infants, they also found no links.

But they said two previously reported birth defects associated with fluoxetine treatment were observed – heart wall defects and irregular skull shape (craniosynostosis).

Five previously reported birth defects associated with paroxetine treatment were also seen, including heart defects, problems with brain and skull formation (anencephaly), and abdominal wall defects.

But the researchers said the absolute risks in the babies of women who are treated with paroxetine early in pregnancy would increase for anencephaly from two per 10,000 to seven per 10,000, and for one of the heart defects from 10 per 10,000 to 24 per 10,000.

“Although our analysis strongly supports the validity of the associations that were observed, the increase in the absolute risks, if the associations are causal, is small,” they said.

“Continued scrutiny of the association between SSRIs and birth defects is warranted, and additional studies of specific SSRI treatments during pregnancy and birth defects are needed to enable women and their healthcare providers to make more informed decisions about treatment.”

Dr Michael Bloomfield, a clinical lecturer in psychiatry at University College London, said that doctors in the UK generally prescribe lower doses of psychiatric medicines to patients than in the US and warned that no one should stop taking treatment without talking to their doctor first.

He added: “It has been known that for some time that there is a small increase in the risk of birth defects when women take these medicines in pregnancy, although some of these medicines appear to be safer than others.

“Whilst common, depression can be a potentially life-threatening illness. Any decision around treatment in pregnancy needs to weigh up the potential small risks of birth defects against the benefits of treatments including helping a mother get better from depression.

“In addition, there is evidence to suggest that a baby whose mother had depression during pregnancy may be more likely to have mental illnesses themselves during later life.

“Any woman who is either pregnant or planning to become pregnant and needs to take a serotonin reuptake inhibitor should discuss her treatment with her GP or psychiatrist.

“It may be that they advise switching to a different serotonin reuptake inhibitor that appears to be safer.

No one should stop taking a serotonin reuptake inhibitor without first discussing this with their doctor.”

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http://www.huffingtonpost.co.uk/2015/07/08/antidepressants-birth-defect-link_n_7758166.html

Cervical cancer: One-in-three women in Manchester are missing potentially life-saving smear test appointments

cervical-cancer-symptoms

Women in Manchester are being urged to ensure they have regular screening for cervical cancer as figures show almost one in three in the city are missing appointments.

Campaigners at the UK’s only dedicated cervical cancer charity have launched a huge awareness campaign aimed at boosting the figures.Watch movie online John Wick: Chapter 2 (2017)

It comes as experts have also called for the screening programme – known as the smear test – to be extended to over 64s.

National charity Jo’s Cervical Cancer Trust has launched advertising on buses urging women to have regular tests.
It says those missing out are putting themselves at risk of developing skin cancer.

Robert Music, the charity’s chief executive, said: “The NHS cervical screening programme saves around 5,000 UK lives every year and yet one in three women in Manchester failed to attend screening last year.

“I had a letter asking me to come to a meeting with a consultant to discuss my results. That’s when I knew something was wrong”
“It’s time that we see a shift in awareness of the importance of screening across women of all ages.”

Manchester was chosen as one of four cities for the campaign as figures show that screening uptake in the city is below average.

Across all age groups, 28.9pc failed to attend screening, compared with 22.2pc across England.

Numbers increased further among women in Manchester aged 50-64, with 29.4pc failing to attend.

The charity’s own report found that a lack of knowledge about the cause of the disease and who can be affected seems to be contributing to women aged 50 and 64 not attending screening.Watch movie online The Transporter Refueled (2015)

Screening is the most effective way of preventing cervical cancer and is offered to women aged 25 to 64 on the NHS.

Reality TV star Jade Goody’s battle with cervical cancer drew significant attention to the disease and there was a spike in women getting themselves tested following her death in 2009, but numbers have declined since.

Experts at the University of Keele have called for screening to be rolled out to women over 64 after their research showed that 20 per cent of new cases fall in that age group – after which the screening programme currently ends.

Around half of cervical cancer deaths occur in women over 65.Watch movie online The Transporter Refueled (2015)

Sue Sherman, senior lecturer in psychology at Keele University, said: “Regular screenings have the potential to catch the disease early and reduce the victims of cervical cancer dramatically.”

Sarah Williams, Cancer Research UK’s health information manager, said; “We need to make sure that women are aware of the screening options available to them at different ages, and that barriers to taking part are addressed.”

Six-year-old boy told to ‘take off hearing aid to look smart for school photo’

Alfie Durant’s mother Kerri says he was left ’embarrassed and upset’ at being asked to take off the device

Alfie wearing his hearing aid (left) and without it in his school photo

Alfie wearing his hearing aid (left) and without it in his school photo Photo: Middlesborough Evening Gazette

A six-year-old boy was left “embarrassed and upset” when his school made him take off his hearing aid so he would look “smart” for his school photo.

Alfie Durant’s mother Kerri was puzzled when he refused for the first time to wear the device to school in case his classmates laughed at him.

But she realised why three days later when he brought his pictures home and she saw he had been photographed alongside his little sister Scarlett, five, without the hearing aid, which sits behind his ear and is worn on a black band around his head.

When the school photographer arrived Alfie Durant was taken to the school office to have his hearing aid taken off at Middlesbrough’s Pallister Park Primary.


Alfie Durant’s hearing aid (Evening Gazette)

Mrs Durant immediately complained to the school saying her son, who has severe hearing loss in both ears, was being singled out because of his disability.

The school, ranked “outstanding” by Ofsted, has now apologised to Alfie’s mother and father, Robert, saying there was “no intent to cause any offence by either any member of our staff or the photographer”.

Mrs Durant, 28, a restaurant supervisor, became suspicious that something was wrong when Alfie refused to put his hearing aid on the morning after the school photo shoot.

She said: “He said he was embarrassed to wear it in front of his classmates and he never had been before.

“Then when his pictures came he wasn’t wearing it in them and he told me the school told him to take it off for the photo so he would look smart.

“I phoned the school and spoke to the special educational needs officer who said they made a decision that I would want his aid off for the photograph.

“I feel my son has been discriminated against because of his disability and would like people to know how he is treated.

“Alfie suffers a lot with his condition but he is such a brave lad. He should be accepted as he is.”


The school photograph (Evening Gazette)

Christine Wain, head teacher of Pallister Park Primary School, said: “Alfie is a beautiful little boy and takes a gorgeous picture whatever he is wearing, we have lovely photos of him on our website with his hearing aid on.

“The school photographic sessions saw our visiting photographer take 600 pictures over two days and we do our best to ensure that parents are pleased with the photos they receive.

“There was obviously no intention to cause any offence by either any member of our staff or the photographer, and we have already apologised to Alfie’s mum for any upset caused.

“Perhaps we could have taken one picture with and one without, but hindsight is a wonderful thing and we will be sure to keep Alfie’s hearing aid in place when next year’s pictures are taken and we can only apologise again.”

 

Study Offers New Insights Into AED/Autism Risk For Pregnant Women

Ultrasound scan of foetus

A new Australian study has provided clearer insights into the link between the use of antiepileptic drugs (AEDs) in pregnant women and the elevated risk of autism in their unborn children.

Conducted in partnership between the University of Birmingham and a number of Australian institutions, the prospective cohort study examined 105 children exposed to anticonvulsants during pregnancy in order to gain a better understanding of the true risks involved.

Each of the children were aged between six and eight years old and were recruited via the Australian Pregnancy Register for Women on Antiepileptic Medication. Maternal epilepsy, pregnancy and medical history data were obtained prospectively, while autism traits were assessed using the Childhood Autism Rating Scale (CARS).Watch movie online Get Out (2017)

According to results published in the medical journal Epilepsia, 11 children – or 10.5 per cent of the cohort – had elevated CARS scores, enough to indicate an increased rate of autism traits across the sample.

The most important determinant of association with autistic traits was higher doses of sodium valproate exposure – of the 11 patients affected, two had been exposed to valproate monotherapy, two to carbamazepine monotherapy and seven to valproate in polytherapy.

Linear regression analysis showed that the mean valproate dose during pregnancy was a significant predictor of CARS scores after controlling for polytherapy, mean carbamazepine dose, folic acid use, seizures during pregnancy, tobacco and marijuana use, maternal IQ and socioeconomic status.

First trimester folic acid supplementation and marijuana use were also significant predictors of CARS scores.

Additionally, the paper highlighted one potential way in which valproate could be incorporated into maternal epilepsy treatment in a less risky manner.

The researchers said: “The use of valproate in women who may become pregnant is now generally avoided; however, there is insufficient data regarding the risk of ASD with low-dose valproate.

“If this risk is no greater than with other AEDs, it may enable women with genetic generalised epilepsy to retain optimal seizure control, as well as minimise harm to their unborn child.”

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