Erin Can Finally Hear

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Yesterday was a very long awaited and anticipated day.  16 months ago my daughter Erin (6) was diagnosed with deafness, another symptom from her primary condition FACS.

Since becoming a mum, I am used to having diagnosis of many things with the kids but I was so upset about Erin having hearing loss.  She was always very loud but I just put it down to Erin being Erin and also having 2 sisters and 2 brothers a way of her seeking more attention.  I also envisaged the hearing aid she was to be fitted with like my Grandad’s (15/20 years ago) an aid that would be like a box, a mustardy grey colour and be whistling on and off.  It may sound very nieve and in a way I am, but until your faced in this situation, you don’t know what to expect.

What a long way in technology we have come.  The hearing aids today are fantastic.  They come in lots of different colours and are a lot lot smaller than they were years ago.  What has amazed me about Erin is how she has been looking forward to getting them.  No embarrassment, she has been telling everyone about how excited she is and can’t wait to see them.  Erin picked pink and glittery  (she’s very girly), and when we saw them today,  I was still a bit sad that she did have to wear them, but that all vanished when they were fitted.  The look she gave me and her dad, a huge smile.  I asked her could she hear better and smiling she said yes straight away.  She told us the noises she could hear were clearer. I can’t tell you how fab it was when she said “I can hear”…… brilliant.  A game we would regular play, in which we would cover our mouths and say words she could hear what we were saying where as before she couldn’t hear anything, or would guess at words.

She woke today excited to go to school to show her friends.  She has been assigned a support worker who will go into school and help her adapt to them.  She is also going to do a talk to the rest of the children about hearing aids, explaining what they do and what they are used for.  Erins teacher also has hearing aids so this morning after having spoke to Mrs T she couldn’t wait for her school day to start.

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I want a public inquiry into epilepsy drug that harmed my babies

27 Feb 2013 15:51

Whitefield mum says she wasn’t warned of side-effects and manufacturer claims medics should flag up risks

Anthony Pooler
Emma Murphy with, from left, children Lauren, Kian, Chloe, Erin and Luke

A mum is calling for a public inquiry into an epilepsy drug she took while pregnant which she claims has led to her five children suffering physical and development problems.

Emma Murphy, from Whitefield, is spearheading a drive to raise awareness  of the dangers of taking Epilim for women and girls of child-bearing age.

Epilim is one of the registered trade names for sodium valporate, an anti-epilepsy drug also prescribed to people suffering from bipolar disorders and depression – but there is a risk of birth defects if taken by pregnant women.

Emma, 32, who was diagnosed with epilepsy when she was 12, has five children aged three to nine with 40-year-old husband Joseph.

Their children – Chloe, nine, Lauren, eight, Luke, seven, Erin, five and Kian, three – all have physical and development problems including autism, deafness, cerebral palsy and incontinence.

Emma, of Richmond Close, said: “It is incredibly difficult as my children each have individual needs and dealing with children on the autistic spectrum is particularly challenging. My husband and I have a good routine and we’re managing but it has put a lot of pressure on us as a couple. Thankfully, it has made us stronger. We believe this is a real scandal because Epilim was introduced in 1973 yet GPs are still not alerting women to the dangers of taking it if they’re of child-bearing age.

“It’s one of the best drugs to control seizures but we believe thousands of children have been born with birth defects and go on to have development disorders as a result of their mothers taking it while pregnant.

“The big problem is that women still aren’t getting the advice before or during pregnancy even though this drug has been around for 40 years. I want to know why I was never told of the risks when I was pregnant.”

Researchers at Liverpool University published a ground-breaking report this month which found that children exposed to Epilim in the womb were more likely to develop neurodevelopmental disorders.

A spokeswoman for Sanofi, the pharmaceutical company that manufactures Epilim, said: “For some women of child-bearing potential, valporate may be the only effective seizure-control medication. However, a decision to use valporate in such women should only be taken after a very careful evaluation between the patient and her treating physician if the benefits of its use outweigh the risks to the unborn child.

“Because of the well-known risk of birth defects, valporate has not been recommended as a first-choice agent for women with epilepsy who are of child-bearing potential. As recommended by the manufacturer, women of child-bearing potential should be informed of the risks and benefits of the use of valporate during pregnancy. It is important to stress that stopping any anti-epileptic medication suddenly can lead to a recurrence of seizures which may be fatal.”

Anthony Pooler
Emma Murphy

Doctors and midwives told me to keep taking Epilim
by Emma Murphy

“Accepting that a prescription drug has affected the health of my five children is something I have to live with.

I was prescribed Epilim at the age of 12 after being diagnosed with epilepsy. It is one of the best drugs on the market to control the condition, but the effect it can have on the unborn baby is a different matter.

Throughout my pregnancies, I was never warned of the possible side-effects. Questions were asked about how I was getting on with my epilepsy, but at no point throughout consultations was I advised about the possible side-effects of taking Epilim on the babies growing in my womb.

I was told to continue taking it. GPs, midwives and consultants all advised me to do so. I had complete trust in the medical profession.

Call it a mother’s intuition, but I soon realised something was wrong with my children.

Comments were always made about their features – their eyes and noses… what I know now as facial dysmorphic features – a symptom of FACS (Fetal Anti Convulsant Syndrome). Developmentally, they were always late in reaching milestones, particularly when it came to speech.

During this time I was diagnosed with depression and whenever I brought up the fact something didn’t seem right, it was a case of ‘Emma you have depression, there’s nothing wrong’. I was made to feel I was a neurotic mum imagining things. When I raised my concerns, I was given the brush-off.

When I discovered the link with Epilim and birth defects, I actually felt relief – I wasn’t going mad after all. Relief mixed with sadness and devastation that had I not taken the drug the outcome could have been so different. Yet awareness in the medical profession is still worryingly absent.

Most clinicians don’t seem to know about FACS syndrome and to this day women are unaware of the potential side-effects Epilim could have on their babies. We urge the government to hold a public inquiry into this matter.”

             

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Epilim and Obesity

I’ve read an article today and I’m so stunned.

https://www.epilepsy.org.uk/news/news/valproic-acid-may-treat-obesity-63768

The medication Epilim (Sodium Valproate)  prescribed for a variety of things Epilepsy, Migraine, Depression, Bipolar Disorder etc it would seem the drug company Sanofi want to continue their payroll and profits…….as Epilim  is now being prescribed for Obesity.

As always Sanofi have totally contradicted themselves.  Epilim is renowned for its increase in Weight Gain and has been published by Sanofi on the PILS leaflet (Patient Information Leaflet) that a side effect of Epilim is Weight Gain.  I, myself was on Epilim for a good few years.  My appetite definately increased, I was always hungry so with that was the obvious weight gain and I’m not just talking a few lbs ……. a good 4 stone.  We have spoke to a number of ladies who have also been on Epilim and they themselves have put weight on.

Here at FACSA we currently understand that Epilim is being prescribed OFF LABEL which means it does not hold a licscense to be prescribed.  In Britain MHRA (Medicines and Health  Regulatory Association) govern every medicine that is allocated to be prescribed.  It would seem in todays world, its not about patient safety, duty of care, making sure patients have the correct information……but its more about keeping drug companies in the money to help and support themselves in their high flying careers and lives.

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Fetal Anti Convulsant Syndrome Awareness Week 2014

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Monday 10th Feb we will be holding National Fetal Anti-Convulsant Syndrome Awareness (FACSA) Week 2014. This is our first Official Awareness Week and so it is prime opportunity to raise awareness not only for the condition but also for the Organisation and the work of the Trust(IN-FACT).

What is #fetalanticonvulsantsyndrome

Fetal Anti Convulsant Syndrome is a condition caused when a woman taking Anti Epileptic drugs (Sodium Valproate, Carbamazipine & Phenytoin and others) either for:

Epilepsy, Depression, Mood Swings, Pain Relief, ADHD, Bipolar Disorder or Migraines

has been prescribed before or during her pregnancy.

FACS is thought to arise because some of the medications taken to treat all of the above pass through the placenta and into the developing foetus. If a child is diagnosed with FACS there is a very high chance they will also have symptoms of the list below. It is important that your child has a diagnosis of FACS Syndrome and then seeks other diagnosis if needed.

Spina Bifida
Heart Defects
Limb Defects
Inguinal Hernia
Joint Laxity and Poor Muscle Tone (very bendy)
Visual Problems such as short sightedness, squint and strabismus
Characterisric Facial Features
Incontinence
Scholiosis (Curvature of the Spine)
Delay in Reaching Developmental Milestones
Gross and Fine Motor Difficulties
Lower IQ
Autistic Spectrum Disorder (Autism, Dyspraxia, Aspergers Syndrome)
Attention and Memory Difficulties
Speech and Language Difficulties

If you feel your child may have FACS you must speak to your GP about your concerns and request to be referred to a Paeditrician or Clinical Geneticist. Not every child who is exposed to these medicines will have FACS. NEVER stop taking your Anticonvulsant medication without medical advice as this could pose a serious risk to you and if pregnant your child

http://www.dailymail.co.uk/health/article-2146918/Why-doctors-warning-new-Thalidomide.html#axzz2JxKeGSls

Manchester Evening News

Manchester Evening News

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We have information going out in areas such as London, Newcastle, Nottingham and Manchester, with awareness being raised through the Twitter campaign at Emma4facs and on Facebook where people can find us by typing FACSA into the search bar

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Twitter
The hashtag #fetalanticonvulsantsyndromeawareness will be on all our posts and would be very grateful if any posts you see with this hashtag you could kindly retweet.
You can also type in www.facsa.org.uk onto tweets for people to get more information

Facebook
If you type in FACSA into the search bar we will appear. Please hit the LIKE button and share amongst your friends and colleagues. This will only take a few seconds to do and in doing so you are helping our National Campaign reach more ladies who WILL be taking these medications.
We have lots of news already filtering in and will keep you all posted as the week goes on.

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FSA - FACS SYNDROME ASSOCIATION

FSA – FACS SYNDROME ASSOCIATION

FACSA Newsletter

We have compiled our latest Newsletter with all information we feel is relevant to our campaign, for parents to know about. We will publish our next Newsletter in 6 months time. If you would like a PDF copy to be emailed to you, do get in touch.

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Advice From MIND on Anti Depressants

Actual Link from MIND : http://www.mind.org.uk/information-support/drugs-and-treatments/lithium-and-other-mood-stabilisers/during-pregnancy-and-for-children/#.UpDquMTIYfR

Mood stabilising drugs during pregnancy, childbirth and breastfeeding
As a general rule all drugs are best avoided in pregnancy unless essential, so as to minimise possible risk to the developing and newborn infant.

Lithium, valproate, carbamazepine, and lamotrigine should not normally be taken during pregnancy because of known risks to the developing infant. As asenapine is a new drug, there is very little evidence on its safety in pregnancy. Newborns who have been exposed to asenapine in the last three months of pregnancy show side effects in the first weeks of life, including agitation, abnormal muscle tone, tremor, extreme sleepiness, breathing problems, and difficulty feeding.

What are the risks of taking anticonvulsants during pregnancy?
NICE guidelines say, ‘Women with bipolar disorder who are considering pregnancy should normally be advised to stop taking valproate, carbamazepine, lithium and lamotrigine, and alternative prophylactic drugs (such as an antipsychotic) should be considered.’ The use of anticonvulsants in pregnancy is associated with children having developmental delay and needing special educational support.

The following problems are also recorded:

Carbamazepine taken in the first three months of pregnancy increases the risk of spina bifida and related conditions; the risk may be reduced by taking folate supplements. In the last three months of pregnancy there is a risk of vitamin K deficiency in the infant, who should be monitored closely for signs of bleeding.
Valproate should be avoided in pregnancy as it may cause defects and delay in development in the foetus. The possible harms include heart defects, spinal defects such as spina bifida, hare lip and cleft palate, malformed penis, and extra fingers or toes, as well as bleeding and liver disease in the newborn. The NICE guidelines on treatment of bipolar disorder state that valproate should not generally be given to women of child-bearing potential; if no effective alternative to valproate can be found, ‘adequate’ contraception should be used and women should be informed about the risk of harm to the foetus.
Lamotrigine carries a risk of malformations, including cleft lip and palate.
NICE suggests that, during pregnancy, a low dose of antipsychotic is preferable to any of the anticonvulsants above or lithium, because they carry a smaller risk of harm to the foetus.

What are the risks of taking lithium during pregnancy?
Lithium may be taken during pregnancy providing it is done cautiously with awareness of the possible hazards, discussed below. For a few women, lithium maintenance treatment may be thought to be essential.

In the first three months of pregnancy there is some risk of malformation of the heart in the developing infant.

If lithium is given in late pregnancy there is risk of dangerous levels of lithium in mother and infant, as the way in which lithium is cleared from the body alters suddenly at childbirth. Lithium is also associated with a higher than expected frequency of stillbirths and deaths soon after birth.

If lithium is to be taken at any stage of pregnancy, careful monitoring of lithium levels is most important to avoid toxic effects.

Planned pregnancy
If you are planning to get pregnant, it’s a good idea to discuss this with your doctor. If you decide to come off lithium, this should be done gradually over six to eight weeks, or longer, depending how long you have been taking it for. Afterwards it might be an idea to wait a few weeks before trying to conceive, in case your bipolar symptoms recur and you decide you need to go back on lithium.

Unplanned pregnancy
If you find you are pregnant while you are taking lithium and it is early in pregnancy, you and your doctor might decide you should stop taking lithium immediately.

If you have been pregnant for some time without realising it, you should discuss with your doctor whether you should have an ultrasound scan. This can usually identify any possible problems in your baby’s development, looking especially at the heart.

Continuing lithium during pregnancy
If you and your doctor decide it’s best to continue with the lithium treatment, then you may need to adjust your dose. For example, the kidneys clear lithium from the body differently during pregnancy, so your dose may need to be increased to cope with this.

During the first half of pregnancy, blood lithium levels should be checked monthly; towards the end this should be done weekly. It may also be better to split the total daily dose into three or more doses a day, so that the level of lithium in your blood does not reach such high peaks as it does if you take larger doses less often.

In late pregnancy it is very important that the doctor who is prescribing and monitoring your lithium treatment consults closely with the obstetrician responsible for your baby’s delivery.

Lithium and childbirth
In childbirth, the way that the body clears lithium alters suddenly. If you have continued taking lithium during pregnancy, some doctors may suggest you withdraw lithium treatment gradually in the weeks leading up to the estimated date of delivery, in order to minimise the risk of toxic effects in both you and the child.

Others may suggest continuing with lithium treatment until the date the baby is due or until labour begins. They may think you should continue with lithium as long as possible as a protective factor against the risk of serious mental illness (postnatal psychosis).

Lithium should be stopped as soon as labour begins. The obstetrician will need to carefully check your fluid and salt balance and the level of lithium in the blood.

After childbirth
For those who have already had a bipolar episode there is a significant risk of serious mental illness (puerperal psychosis) during the weeks after the birth. Because of this, lithium is often started again as a preventive measure a few days after childbirth. Frequent monitoring of the level of lithium in the blood will be needed at this time to achieve a therapeutic dose. Continuing use of the drug would need to be reviewed in the normal way at the end of the period of risk.

Are there alternatives to taking lithium during pregnancy?
If drug treatment is considered to be essential, then antidepressants or antipsychotic drugs may be prescribed instead. The type of drug given would depend on the pattern of your mood changes and your symptoms. The following information indicates particular risk periods associated with these alternative drugs.

Tricyclic antidepressants given in late pregnancy have been associated with withdrawal symptoms in newborn babies. Irritability, muscle spasms, restlessness, sleeplessness, fever and fits have been reported.

One antipsychotic drug, prochlorperazine (Stemetil), is associated with malformations in the developing baby when given during the first three months of pregnancy. The use of antipsychotic drugs in late pregnancy may cause temporary reactions in newborn infants: Parkinson’s reactions have occasionally been reported. These include muscular rigidity, involuntary movements and shaking. If long-acting drugs are taken they take time to clear from the body. The last dose should be taken six to eight weeks before the expected birth.

For further information about these drugs see antidepressants, antipsychotics and coming off psychiatric drugs.

You should be able to get further information from your doctor regarding any drug you are advised to take during pregnancy. It is very important to discuss all aspects of your drug treatment and any concerns you may have with your doctor, obstetrician, midwife and pharmacist.

What are the risks of taking mood stabilisers while breastfeeding?
You should not breastfeed while taking lithium, as lithium passes into the breast milk in sufficient amounts to be dangerous to the baby.

Carbamazepine, valproate and lamotrigine all appear in breast milk in small amounts so breastfeeding is not recommended. However the British National Formulary suggests that amounts are not considered sufficient to be harmful.

You should not breastfeed while taking asenapine.

Children and mood stabilisers
The ‘British National Formulary (BNF)’ and the ‘Summaries of Product Characteristics’ (produced by the drug manufacturers) say that lithium is not suitable for children. However, the ‘BNF for children’ states that lithium may be given to children, only on the advice of a specialist. Because of the long-term effects, the need for treatment should be reviewed regularly.

The ‘BNF for children’says that carbamazepine and valproate may be useful in children unresponsive to lithium. It gives no guidance on the use of lamotrigine as a mood stabiliser in children.

Asenapine is not recommended for anyone below the age of 18.

All drugs should be used with caution, and at doses appropriate to the child’s age and size.

Signs of Autism

Autism has many signs and characteristics. Every child is different and Autism can present itself on the mild end of the spectrum but also on the severe side. Below are some of the many signs a child MAY be Autistic. Does your child have any of these traits??

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My Newspaper Feature – FACS SYNDROME

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Knowing and living with the fact that a prescription drug described by my GP, has affected the health
of my 5 children is something I will always have to accept and live with.

The Government seem to focus on the dangers of smoking, alcohol and recreational drugs in
pregnancy. What about prescription drugs? Prescription drugs are not a choice for ladies in
pregnancy, they are prescribed for a reason whatever it maybe. Its all well and good focusing on
smmoking, alcohol and recreational drugs, awareness wise it is a good thing, however they are a
choice. A conscious choice the lady has taken upon herself, prescribed drugs are not.

I was prescribed the drug Epilim aged 12 after being diagnosed with Epilepsy. For people with
Epilepsy, Depression, Bipolar, Migraine, Pain Relief etc Epilim is one of the best drugs to control
these conditions. However the effect is has on the unborn baby is a different matter. A medicinal
drug I was prescribed and at no point throughout my pregnancies was I warned of the dangers of
what Epilim could do. An action in todays era is shocking. This is a position ladies up and down the
country are facing and have done since Epilim was introduced onto the market in 1973.

Back in 2005 the MMr scandal caused huge controversy as it was THOUGHT that having the MMR
injection to babies MAY cause Autism. Last week a medical journal was published categorically
stating that if a baby is exposed to Epilim during pregnancy it will cause “Neurodevelpomental
Disorders”. Figures from our medical team that 48,000 children have been exposed to Epilim and
40% of those children will have both physical and cognitive long term conditions. This will result in
the child then being diagnosed with FACS Syndrome, and other conditions associated with it.a

Use of the drug?

With regards to my care during my pregnancys about my Epilepsy, questions would be asked as to
how I was with my epilepsy? Was I having seizures? However at no point throughout consultations
was I advised about the affect Epilim could do. This would be discussed with midwife, anti natel
consultant and the advice given back was always to continue with the dose of Epilim and to increase
my dosage of Folic Acid. This was advice given by fully qualified GPs, Midwives and Consultants who
have studied all areas of their field….who am I to question advice given. I had full trust in them,
after all they are the professionals.

How did I feel when I realised it was Epilim??

Call it a mothers intuition, the older the children were getting I always knew deep down something
wasnt right. Comments were always made as to their faces…. there eyes looked chinese or there
cute button nose, something that really annoyed me. This I know now is a symptom of FACS – Facial
Dysmorphic Feature. Developmentally they were always late in reaching milestones particularly
when it came to speech. During this time I had been diagnosed with depression and whenever I
would bring up the fact something didnt seem right, it was a case of “Emma you have depression,
theres nothing wrong” Making me feel as though I was a neurotic mum imagining things. Constant
crying all day wih the babies, taking them too hospital to see why they were crying so much….”Its
just Colic” Raising my concerns with health visitors, the babies getting frustrated and banging there
heads off the floor in Tantrums “Its the terrible two’s” Constantly getting brushed off. Finding out
it was actually the Epilim, was a mixture of both relief – I knew I wasnt going mad or imagining it but
complete devastation knowing I had taken the medication and it had caused these difficulties with
my children.

Awareness

Awareness within the medical world needs to be highlighted more. Taking the children to
appointments to find that most clinicians are not actually aware of FACS SYNDROME is still to this
day very annoying. On every appointment with the children we would always bring a very basic
booklet for the Dr to look at explaining what this condition was. It was like Groundhog day on every
appointment. When a Dr is asking you the parent what the medical condition is, frustration is not
the word. If Drs were not aware of this, would ladies on this drug be?? With that I decided to use
the social network site Twitter to try and raise awareness and to see if any other parents were facing
the same thing. I then decided to talk more about it, and formed my blog, just talking about the
children, posting pictures and my thoughts Amazed by the response I had and finding that still to
this day ladies are not aware of the effects Epilim is having on their babies, a very scarey thought.

Each year the drug company who make Epilim, profit continuously. In 2011 they made 388 MILLION
euros by this one drug. They are totally aware of the effects Epilim has on babies as they have paid
for various studies to be carried out. I fully understand that they are a business and it all comes
down to money but how can they seriously allow this drug to affect babies in such a devastating
way. Under the FACS Syndrome umberella approximately 5000 babies are born each year. Why
should it be the taxpayer paying for the care of these children it should be the drug company. As a
trust our next step is to carry on raising awareness within Government. Our EDM (Early Day Motion)
has just been accepted so this will back up and strengthen our case to hopefully get the Public
Enquiry that is needed, to stop this continuous rise in affected babies.

Make It Count

Make It Count

TWITTER : Emma4facs

WEBSITE: www.facsa.org.uk