One thing you never want to learn as a mother is that something could be wrong with your child. Worse still is the thought that it could indirectly be your fault. Pup was diagnosed at 2 years old with Foetal Valproate Syndrome.

I live with this every day but my son is one of the lucky ones.

What is it?

Valproate Syndrome can affect a child whose mother has been prescribed Sodium Valproate whilst pregnant. It can cause birth defects and development problems in the unborn child which can show up after birth. The following are a list of possible symptoms:

Facial features – those diagnosed with FACS may present with characteristic features including epicanthic folds (skin of the upper eyelid covering the corner of the eye, and a small upturned nose with a wide bridge).

Congenital heart problems

Spina-bifida – a defect whereby the spinal cord does not develop properly and is exposed through a gap in the vertebrae.  This can lead to weakness, paralysis, problems with bladder control, and orthopaedic abnormalities such as scoliosis of the spine

Cleft-lip/palate

Genital abnormalities

Skeletal abnormalities – these may include clubfoot, rib cage abnormalities, or stiff joints

Development delay – which may be characterised by autism, learning disabilities, impaired memory, delay in developing gross motor skills, communication problems, and/or ADHD. 

https://www.ibbclaims.co.uk/site/services/medical-negligence-solicitors/sodium-valproate/

My History

I was diagnosed with Petit Mal Epilepsy at a young age and have been on a low dose of Epilim (Sodium Valproate) ever since. Petit Mal is a child form of Epilepsy and, for me, it showed itself in the form of 10 second seizures, whereby I would stare blankly into space. Thankfully they were not full blown seizures. Later, as I got older, I was diagnosed with Juvenile Myoclonic Epilepsy. Not too much of a difference in symptoms to be honest. My case is very mild so, the dose I have been prescribed is kept at 200mg solely so that I am be able to drive.

Pregnancy Risks

4 years ago, we did not know that Sodium Valproate posed any risks during pregnancy. 2 years ago, that all changed, resulting in cases of Valproate Syndrome. Even now, it is not widely known by people and I feel like it is something that we need to raise awareness off.

Since the effects of the drug were discovered, the NHS has upped their game. Every box of Sodium Valproate that is issued to a woman of child bearing age must have the warnings on the box and the patient information leaflet included. It should be kept under close review with the consultants and there is also a Sodium Valproate Pregnancy Prevention Programme.

There has been a lot of action taken to prevent Valproate Syndrome however, there is not enough awareness surrounding those cases that happened prior to 2018. As far as I know, there is nothing in place for families already affected, who may not know it. I may be wrong. Anything I say in this post is strictly from my own experience.

Valproate syndrome
Clearly marked warning on the medication

Logically, I know that it is not my fault that my son has been affected by this drug. Emotionally however, I was the one ingesting the medication and in turn, my son paid the price, all-be it, in his case, a small one.

Pup’s Symptoms of Valproate Syndrome

We first noticed that something wasn’t quite right from Pup’s appearance. When he was born, he had quite a wide flat bridge, a small nose and folds across the corners of his eyes. To me though, he was still perfect. At age 2, his face had begun to fill out, but his wee eyes were still noticeable. It was at this point that we decided to visit the GP and in turn were referred to Paediatrics.

At first the Paediatrician said it was nothing to worry about. Later on that day, after reviewing my medical record, he phoned me. He explained about Valproate and advised that he was referring Pup to a specialist. You can imagine what went through my head. As soon as I got off the phone, I burst into tears. The Dr was unbelievably sympathetic and had made it clear that it was NOT my fault but it is a natural feeling for a mother to blame herself.

Eventually, we saw the Specialist who reviewed Pup and diagnosed him with Valproate Syndrome, all be it a mild case. He was also given a hearing test but, as he met all his milestones they said not to worry and discharged him. She advised that from what she could see it was all physical. However, some other development issues, such as Dyspraxia, wouldn’t be visible until he was older. For now though, he was a healthy, happy 2 year old.

Speech Therapy

After the Hospital discharged him, I’d hoped that would be the end of it and, for the past 2 years he has been doing great. He still has small epicanthic folds at the corners of his eyes, but the bridge of his nose has taken shape and these are not quite as noticeable now.

When he first started nursery, we became aware that he did have problems with his speech. He was behind for his age and didn’t know enough words to form large enough sentences. The speech team came to the house to assess him and advise on ways to help him. They are fantastic and we did some work, in conjunction with the nursery, to improve on this.

Now he has quite an extensive vocabulary although can be quite lazy in his pronunciation of some words. Over the past year, his nursery teacher has been working on his listening, understanding and communication and we have seen quite a big improvement, then 2020 hit.

Covid Lockdown

Covid came along and lockdown happened. His regression started to show as he returned to nursery after the summer. I talked a little about this in DIY Daddy Part 2.

After the nursery highlighted some concerns regarding his listening and understanding skills, I contacted our local Health Visitor. He still has trouble with routine after a year in the nursery, and can’t always answer questions posed to him or follow directions. I had some other concerns myself regarding his memory and speech so, she asked to come out to meet with me and discuss.

The one thing I will say is that all these issues are all symptoms of Valproate Syndrome so, you can understand why I was concerned. I worried that he would be held back by it later on, when in school.

After a lengthy chat she advised she would contact the nursery again to review what we had talked about although, she feels that Pup may just be a typical boy; a little bit lazy, maybe coddled a bit (by me), and very much only interested in what he wants to do.

 We are now in communication with the Health Visitor and the nursery to get him back up to where he needs to be.

Now

Despite all of this, part of me still feels that there may be other side effects from the Valproate. I feel there may also be a slight sensory issue. He always has to be beside someone, and not just sitting on the same sofa. He will come up and actually push his cheek against yours or climb up on your head or shoulders. Quite often, you can find him perching on top of my head.

He likes the feeling of skin on skin contact and likes you to hug him tightly. At the same time, this could just be his personality. He is a very lovable little boy with a sweet and caring nature, despite being a tad on the rambunctious side at times.

Even though his speech has improved, I still have some small concerns. When he talks, it takes him an abnormally long time to say anything. Sometimes I feel like there is a blankness behind his eyes when I ask him to do something. It isn’t all the time and he is getting better at following direction but there are still moments when he doesn’t seem to understand what you are telling him to do.

I know I am partly to blame for some of his behaviour. I would quite often dress him to save time in the morning and help him with his dinner to prevent too much mess. He is also my baby. It’s hard to let go when you know this is your last child. You want to hold onto the baby in them as long as possible. I might have held on a bit too long.

Looking towards the Future

The dose of Epilim I take is extremely small so Pup is one of the lucky ones. Any symptoms he may show of Valproate Syndrome have been minimal so far. He hasn’t shown any other physical symptoms, all seem to be developmental, mainly surrounding his communication.

We will know more in the coming years, especially how he copes when he starts Primary 1. Until then we smother him in love and support him no matter what.  

As his parents, the hubby and I know now what to look out for, to help him through his education and ensure he gets the help he needs, if any. I believe that even though doctors may have an awareness of this now, other people have not. The Nursery, and the Health Visitor, were not aware until I brought it to their attention.

I feel that this is an area where some children might slip through the gaps. Any child born prior to 2018, whose mother was on this medication, could be susceptible to showing symptoms of Valproate Syndrome. We only broached the subject because Pup developed epicanthic folds. If we hadn’t then we would never have known. We also would never have known what to look out for in his later years.

Raise Awareness

Now we do, I want to raise awareness to everyone else. I hope people read this and I hope my story benefits someone else out there. I will continue to add to this as Pup grows, if anything else flags up, providing any further information I can. Hopefully, I won’t need to. I pray that his nursery years are the extent of it.

Only time will tell…

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Please see below Links for more information on Sodium Valproate and Valproate Syndrome. Any links posted in this Blog are not affiliate.

Patient Info: https://patient.info/pregnancy/fetal-anticonvulsant-syndrome-leaflet

Rare Diseases: https://rarediseases.org/rare-diseases/fetal-valproate-syndrome/

NHS: https://www.nhs.uk/medicines/sodium-valproate/

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6 Comments

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