Fetal Anticonvulsant Syndrome A parent’s guide into FACS (Our kids don’t come with manuals!) Table of Contents ABOUT FOETAL ANTI-CONVULSANT SYNDROME NEW ZEALAND (FACS NZ)............................................ 4 ANTI-SEIZURE MEDICATIONS IN NEW ZEALAND ..................................................................................... 5 THE EXCLUSIVE CLUB ............................................................................................................................. 6 FETAL ANTICONVULSANT SYNDROME (FACS) ........................................................................................ 7 FETAL VALPROATE SYNDROME/FETAL VALPROATE SPECTRUM DISORDER ............................................. 8 FETAL CARBAMAZEPINE SYNDROME ..................................................................................................... 9 FETAL HYDANTOIN SYNDROME ........................................................................................................... 10 FETAL PRIMIDONE SYNDROME ............................................................................................................ 10 HOW TO GET A DIAGNOSIS.................................................................................................................. 11 FAMILY LIFE AND THE DIAGNOSIS ........................................................................................................ 12 SOME HELPFUL IDEAS.......................................................................................................................... 14 ACC ..................................................................................................................................................... 16 ADDITIONAL SUPPORT ORGANISATIONS OR HELPFUL LINKS ................................................................ 17 NB: There are many different terminologies being used such as anti-seizure, antiepileptic, or anticonvulsant medications. Whatever terminology you or your healthcare professional uses, we just want you to have the information. © 2020 FACS New Zealand 2 Disclaimer: Not all people of childbearing age, who take an anti-seizure medication during pregnancy will have children that are affected by Fetal Anticonvulsant Syndrome (FACS). Consultation with a specialist prior to getting pregnant is recommended. People who are pregnant or are planning to get pregnant should never stop taking their medication without speaking to a medical professional. I am me…you may not understand me, but believe in me, support me, and allow me to reach my full potential…I AM ME! © 2020 FACS New Zealand 3 About Foetal Anti-Convulsant Syndrome New Zealand (FACS NZ) Starting as a passionate group of people beginning a journey of positive change, it became evident early on that a charitable organisation dedicated solely to Fetal Anticonvulsant Syndromes was a necessity. This led to the official launch of FACS NZ in February 2015. FACS NZ Vision The understanding and recognition of what the different Foetal Anti- Convulsant syndromes are and how they can be prevented FACS NZ Mission To provide support, education and awareness of Foetal Anti- Convulsant Syndromes Leading this forward-thinking organisation is our Executive Officer, Denise Astill. Denise has hands on practical experience and knowledge that is not found in a book. She has lived experience of having loved ones who have been affected by Fetal Valproate Syndrome (FVS), as her twin daughters were diagnosed at 4 ½ years of age. Denise has become used to having to pave a way for recognition, knowledge, acceptance, education and support for FVS. Her girls were the very first cases accepted under Treatment Injury with ACC. This was a monumental achievement as it has led to future cases being accepted. At FACS NZ we provide information on our website, Facebook page, support and education, whether it be on an individualised basis, or to a larger group or community, awareness of the syndrome, and seek to decrease the likelihood of these syndromes. We also have Youth Ambassadors with lived experience of Fetal Valproate Syndrome. Please feel free to contact us: FACS NZ Email: [email protected] Website: www.facsnz.com Phone: 021 189 4483 Facebook: FACS New Zealand The future is exciting when we at FACS NZ think about the positive change that is beginning to occur, and know that we are leading this change. © 2020 FACS New Zealand 4 Anti-seizure medications in New Zealand Anti-seizure medications were primarily designed for use in seizure treatment, but they have also been used for mental health conditions, migraines, and pain management. Some people may know them as mood stabilisers. Anti-seizure medications being used in New Zealand are: • carbamazepine - Tegretol® • clobazam - Frisium® • clonazepam - Paxam®, Rivotril® • diazepam – DBL®, Stesolid® • ethosuximide - Zarontin® • gabapentin - Neurontin®, Arrow-Gabapentin®, Apo-Gabapentin® • lacosamide - Vimpat® • lamotrigine - Logem®, Mogine®, Lamictal®, Arrow-Lamotrigine®, Motrig® • levetiracetam - Keppra®, Everet®, Levetiracetam AFT® • lorazepam - Ativan® • oxcarbazepine - Trileptal® • phenobarbital – Phenobarbitone PSM® • phenytoin – Dilantin Infatabs® • pregabalin - Lyrica®, Pregabalin Pfizer® • primidone – Apo-Primidone® • retigabine – Trobalt® • rufinamide – Inovelon® • sodium valproate - Epilim® • topiramate - Topamax®, Topiramate Actavis® • vigabatrin – Sabril® (Please note that this list is not exhaustive and that brand names may change from time to time, so check with your healthcare professional) © 2020 FACS New Zealand 5 The Exclusive Club Welcome to the exclusive club of being a parent(s) or caregiver(s) of a child (or children) who has been diagnosed, or are in the process of being diagnosed, with Fetal Anticonvulsant Syndrome (FACS), Fetal Valproate Syndrome/Spectrum Disorder (sodium valproate or Epilim®), Fetal Carbamazepine Syndrome (carbamazepine or Tegretol®) Fetal Hydantoin Syndrome (phenytoin or Dilantin®), or Fetal Primidone (primidone or Apo-Primidone®). You are not alone, there are others here in New Zealand going through similar experiences, so welcome. This could be a time for you of acceptance, confirmation, or recognition of thoughts that you had been internalising or outwardly expressing for some time. For the vast majority it will also be a time for grieving. Grieving is a normal process, where there is no time limit, and one that varies from person to person. Allow yourself the time to grieve. To the childbearing person out there reading this and saying, “This is all my fault! I have done this to my child!” the next statement is very important for you to read, say it out loud and process. THIS IS NOT YOUR FAULT. You did not do this to your child. The medication is what has done this to your child, not you. THIS IS NOT YOUR FAULT! For this statement to truly sink in will probably take some time, and in all honesty for some people it remains with them. For the father’s out there you could possibly be in denial about the whole situation and thinking there is nothing wrong, or maybe you are going into the “fix it” mode, where you are going to fix everything. Unfortunately, there is no “fix” to the diagnosis, there is however acceptance, and strategies of how to set your family up for more successes. Reassure the childbearing person that it was not their fault. They did not do this to your child. It was the medication, not them. They will need to hear this often initially, as they will be blaming themselves. Life for everyone has changed significantly. Priorities, expectations, values, well just about everything will have changed. Life will undoubtedly bring struggles, difficulties, hardships and challenges, but it will also bring you enrichment, enlightenment and you will be touched in a way that will never be replaced. Your child will show you courage, love, and a strength that you would think is not humanly possible. Let this journey of the Exclusive Club turn into one of the Inclusive Club, where there is acceptance, awareness, education, support, and collaboration of understanding between everyone involved with your whanau. © 2020 FACS New Zealand 6 Fetal Anticonvulsant Syndrome (FACS) FACS (or the relevant syndrome) occurs when the anti-seizure medication that was taken by the childbearing person during pregnancy crosses the placenta and into the developing foetus. The diagnosis of FACS/respective individual syndrome, depending on what anti-seizure medication was taken) can only be made by a specialist, when the childbearing person, took the specific anti-seizure medication(s) during pregnancy and has a child with a combination of physical malformations, dysmorphic (facial) features, neurodevelopment or cognitive difficulties, and no other cause can be found for these difficulties e.g., genetic syndromes. With Fetal Valproate Spectrum Disorder (FVSD) the facial features do not need to be present to have been affected by the medication. When a diagnosis of FACS is made many variables are considered, such as the dosage of the anti-seizure medication (higher dosages carry increased risks), the anti-seizure medication itself (higher risks are associated with sodium valproate), and whether the anti-seizure medication was monotherapy (only a single type of anti-seizure being used) or polytherapy (more than one type of anti-seizure being used). When there is a child(ren) in the family with a confirmed diagnosis of FACS, and the childbearing person was on the same treatment regime as the confirmed child(ren), there is an increased risk