BiographyJessica arrived on time after a long and difficult 37 hour labour. Until she was 5 months old, and diagnosed as lactose intolerant, Jessica spent her first few months vomiting. Because she was slowly gaining weight the doctors wouldn't accept there was a problem. She was diagnosed with reflux for a little while, but eventually, an out of hours doctor suggested to us it might be the milk and said for us to try soya milk. Which we did, and suddenly the vomiting stopped!
Jessica was unable to have any dairy products or anything that had even the smallest amount of milk in it, until she was about 2 and a half, when, with the help of a dietician, we slowly introduced dairy products into her diet. Because of all these problems Jessica developed a bad relationship with food, which still continues today.
We thought Jessica's problems were over, until 12th August 2008.
I went to wake Jessica that morning, it was unusual that she hadn't woken up. I found her unconscious in bed, surrounded by vomit. The fast response ambulance car arrived within a matter of minutes, closely followed by an ambulance. By this time Jessica had come round, but they decided she had to go to hospital. We were seen straight away by a doctor, who said she was happy Jessica was OK and could go home, but she just wanted to get her checked by a pediatrician. While she went to fetch a pediatrician, and my mother-in-law who was with us, popped outside to meet Jessica's dad, (who I'd called to come out of work), Jessica had a tonic-clonic seizure. She was rushed to the high dependency unit, where she was hooked up to monitors, given oxygen, and her bed was surrounded by doctors and nurses. All we could do was stand by and watch. The doctors were just preparing to medicate Jessica to get her out of the seizure, when she began to come out of it on her own.
Jessica was admitted to the children's ward for observation. After a couple of hours, Jessica woke up, bright as a button, asking where she was. The relief was short-lived, as she had another seizure. That evening, when Jessica had come round again she wanted to go for a walk, only to find that she couldn't walk. Nor could she talk. She was slurring her words and struggling to speak. The doctors wanted to do a CT scan to check for brain damage, but as she had eaten they were unable to do it that night. The scan was done the next day under general anesthetic, and they also did a lumber puncture, as they were convinced she had meningitis.
The results would take a few days to come back, so they started to treat Jessica for meningitis. She was given 2 oral anti-biotics, and also one through an IV line. Unfortunately, the anti-biotic was a vein irritant, and after 2 lots of them being given, the vein would start to close and push the cannula out. Which resulted in a new cannula being put in every 12 hours, as the anti-biotics were given 6 hourly. They took an hour to go through, and if she moved it stopped them going through and set off a very loud alarm on the machine that did it. As a result of the cannula being put in so often, Jessica developed a huge fear of needles and blood.
After 5 days in hospital, the lumber puncture came back clear, and epilepsy was diagnosed. We were given some medicine to take home with us and told Jessica would be sent an appointment for an EEG and an out-patients appointment as well.
Jessica went for her EEG, which didn't show anything up, and she started her regular visits to her pediatric consultant. She also had to have regular blood tests, which were horrific. Jessica would scream and shout, kick and bite, all through fear. Eventually, Jessica's epilepsy nurse put us in touch with the hospitals play leader. She came to our house to meet us, and then Jessica began regular visits to the hospital to see her as well, just to play. When it came round to Jessica's next blood test, it was still very traumatic for her, but slightly less so, with the distractions from the play leader. After many more visits, we are now at a point where Jessica will allow the phlebotomist to look at her hand/arm.
Jessica's seizures have been every 4-6 months since then, and mostly always at night. As she has grown, her medication has been increased to stop further seizures.
Jessica was very excited to be starting in reception last year, but at the end of her second week, she began having seizures at school. Ambulances were called, and she was taken to hospital to be monitored. Again, her medication was increased, and she went onto only doing half days, for a little while to see if that helped her.
Jessica struggled throughout her year in reception, with learning to read and write in particular, as well as with her behavior. But, all the time, she gave her absolute best, and tried as hard as she could. Despite missing lots of school time due to appointments and illness. When Jessica gets a simple cold, she has seizures, and can miss school for up to 2 weeks at a time, just for a cold. Because of this she even missed her first christmas concert, amongst other things!
Jessicas seizures became more frequent, and started to affect just the right side of her body. Her reading and writing progress deteriorated. She started to write backwards, and a mirror image. She forgot letter sounds, that she once did know, and couldn't always find the right words that she wanted to say. This often resulted in frustration for Jessica, which she displayed through aggression. It would be directed at the nearest person, be it me, her dad, teachers or friends.
Jessica's pediatrician decided to send Jessica for an MRI scan under general anesthetic, and an EEG. Which she had during the summer. Both of these came back clear of any brain damage. Jessica is also now waiting for an in-depth eye test at the hospital, and another EEG, which will be done while she is asleep.
She has also now seen the pediatric epilepsy specialist, who has decided to change Jessica's medication. This will take over 6 months to do, as her original medication has to be slightly reduced, and the new one started on a very low dose, and increased very slightly every 2 weeks. She has been on the new medication almost 2 weeks and had only one seizure and one day of displaying aggressive behaviour.
We don't know if Jessica's aggression is down to her personality, the epilepsy or medication, I doubt we will ever know.
Whilst Jessica goes through these tests, deals with her fear of needles and blood, and frequent visits to the hospital and doctors, she never complains and is always smiling. She loves life, and is very active, She attends jazz, ballet, and tap classes weekly when she is well enough, which she absolutely loves. Her dance teacher is very supportive and understands Jessica, which enables her to remain a part of the dance school and progress.
Jessica is also a bit of an adrenaline junkie! She loves fair ground rides, especially the big ones! Despite having a seizure on one during the summer, she isn't put off and begs to go on more!
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