Rachels Story

Rachels Story

family

Our experience with epilepsy has been somewhat frightening. I am a registered nurse (graduated in 1996) and have worked in the field of disability and medically fragile children and families since then. This has included many, many children with severe seizures and epilepsy. Both my husband and I have years of extensive experience in community support roles. My husband’s U.K. parents have been awarded MBE’s for the over 45 years of fostering children with a variety of needs and disability.

His older brother had febrile convulsions as a small child, but nothing to the extent of what our children have experienced.,

‘it is so very different when it is your own child’.,

My first daughter, Ashleigh, died at aged 5 weeks from a Neuro-muscular disorder. She was born at 32 weeks gestation and was in national woman’s hospital on life support for her short wee life. Ashleigh would have been 13 years old this coming September.

We had Nikita in January 2002. About 4 days after her 1st birthday, Nikita had a febrile convulsion. 2 weeks later she had a 40 minute seizure and then several more in hospital. A year later (when she was 2) she had a seizure that lasted 2 hours and required ventilation in ICU for 18 hours. After this pediatrician’s decided to place her on Epilim. Epilim works well for Nikita. She had 2 years being seizure free, so the doctors trialed her off meds believing she had grown out of the complicated febrile convulsions. However a few months later she began having 1 hour long seizures again. This continued every 2 years. While on Epilim Nikita was seizure free, when they weaned her off she fitted for lengthy periods of time. Eventually after many EEG’s and MRI’s, in 2011 Nikita was diagnosed with temporal lobe epilepsy and requires meds. However we are soon to be in the process of changing her from Epilim to Topamax before she hits puberty. Nikita also has been recently diagnosed with cognitive learning disability and is currently receiving input from child health child psychologist for reducing her anxieties, improving her self-esteem and learning how to make and keep friendships. She is significantly behind in math’s at school and reading comprehension. She has always struggled with coordination and balance and has received physiotherapy over the years.

Our next baby, Tamsin was born in May 2003. She has never had a seizure and is an amazing child.

Following Tamsin, Alfie was born in april 2009. He (like Nikita) had his first febrile convulsion about a week before his 1st birthday. He presents somewhat differently than Nikita as he does come out of the seizure after about 6-15 minutes however he has a horrific post-ictal period of approx. an hour where he is confused, upset, restless and hard to console. He was placed on Epilim early due to our history. However he has had seizures while on meds (unlike Nikita). He has not had one since October last year so we are in the period of not knowing whether he may be outgrowing things or whether he is just settled on Epilim at this time.

The key things we have found we struggle with

  • People do not understand that Nikita’s seizures are serious. She does not seizure often, but when she does, she does not stop easily and requires immediate medical attention and a lot of medication to settle her.
  • I worry about going too far away from the hospital. I am fearful of a seizure occurring and not being close to help. Which for a couple who used to travel a lot, is restricting.
  • I have become anxious and constantly concerned when I am not with my children because I have to find trust in other adults to care for them if a seizure occurred while I was not there (and then there is mummy guilt on top of that).
  • The stress it places on Tamsin is huge in our eyes. We are very aware of her anxiety levels but are fortunate that she has a group of great friends and cousins so is able to relax often too.
  • How epilepsy has impacted on Nikita’s physical abilities and now her learning too is frustrating. Teacher’s (who do not know Nikita) at a big school event have been seen to pull her along by the arm to get her to jump over hurdles, and this caused her tremendous stress which I was very unhappy about.
  • Being fearful every time the kids get a cold and high temp…waiting for a seizure to occur (usually at night) so sleep is interrupted. Also when the kids are sick, having limited sick leave at work is added stress that others just do not understand.
  • There is a financial concern too. Nikita is prone to being unwell often so doctor’s bills, prescription costs and repeat Epilim prescriptions and fax fees become expensive. (we have very recently been accepted for a child disability allowance for Nikita and are waiting to see if Alfie can receive this too).
  • Constantly living our life in a state of alertness. Watching and waiting in case a seizure occurs is draining. I have forgotten how to relax.

We adore our 4 kids. They are all gorgeous and very much loved. We are so lucky we have fantastic family close by and amazing friends too all over the world, who provide support, sanity and a shoulder to cry on when needed!

Kind thanks
Rs