Victoria was born on 13.10.86, her expected date of delivery was 01.11.86. After an uneventful pregnancy Victoria was found to be in the breech position and was manually turned a few weeks before delivery. Victoria’s delivery was normal and we were discharged home after a thorough check. Our fears that she might be like her sibling were allayed.
|
|
Victoria Pictured in 1994
|
|
At six weeks we asked our GP for an appointment with the paediatrician. Victoria was hardly feeding, loosing weight and listless. She was admitted to hospital and we were told that we had another handicapped child. At this point there was no diagnosis. We were at our lowest ebb.
At three months she had severe feeding problems. She had begun vomiting after every feed. Her suck was poor. She presented as a floppy, listless baby with runny stools which caused severe nappy rash. She had constant ear and chest infections which spiked with very high temperatures.
At six months the situation remained the same and we were referred to Professor Dubovitz at The Hammersmith Hospital in London.
At one year we were given a diagnosis of a neurological problem, genetic in origin. Being recessive each birth carries a one in four chance of being affected.
At two years Victoria had struggled to thrive. She had been in hospital several times and was a sickly child. She had serious feeding problems and a small removable plate was made for the roof of her mouth by a dentist interested in her plight. This helped depress her tongue and encourage swallowing. We fed her initially with melted ice-cream (she did not like this at first), then smooth, pureed baby food with the tip of the spoon dipped in ice-cream to mask the taste. I would add that this was a labour of love from everyone concerned especially her grandmother. It took great persistence to teach her to swallow and feeding times were distressing for both Victoria and us, but we gradually go there, (I feel I could write a book on the feeding tips). Whilst now swallowing Victoria was still vomiting and suffered a colic pain most evenings. She was a restless unhappy child who had no regular sleep pattern, and was unable to do anything for herself. She could not even roll over in her cot. Her height and weight were both below the third centile.
At two and a half we started the Doman Delcato programme. Although initially very unhappy at being made to exercise, this was gradually accepted over a period of a few weeks. Significant improvements in feeding and sleeping were soon noticed and the colic pain subsided.
By three years Victoria could roll from back to front. She could sit propped with one hand and was beginning to use a potty. Her general behaviour was improving (much to our delight). Our paediatrician begrudgingly accepted that this improvement (as with her brother) is due to the patterning. Victoria had periods of a trance like state when it was difficult to get her attention. This was followed by her first fit Victoria had an ear infection wit a high temperature and had her fit while we were traveling home in our car from the grandparents. We could not get Victoria’s attention, suddenly she was unconscious and breathing with great difficulty. When driving down a motorway at 70 miles per hour this is very scary. By the time we got to the next motorway exit we thought Victoria was dying. In hospital the doctors could not stop the fitting and she was rushed with the police outriders to a regional children’s hospital for emergency treatment. The fit was eventually controlled but Victoria had had so much Valium that it was two days before she regained consciousness. When she did wake up she was so hungry she started eating solid foods unaided for the first time ever. This episode was labeled a febrile convulsion and no long term medicine prescribed.
At four years Victoria was much happier, she could sit independently, she could hold a biscuit and finger feed. She was dry by day and sometimes by night. Beginning to find her voice! She is still dreamy on occasions but otherwise doing fairly well. Still suffering ear infections and below the third centile.
At five years, now at local primary school. She knows her colours, shapes and can count to ten. This year the second and successive fits began.
At six she starts Carbomazepeim (Tegretol) to control her epilepsy. This is increased as the severity of her fits increases.
Seven years. Victoria is suffering a succession of Grand Mal, Petit Mal fits and absences. The more the Tegretol is increased the worse the side effects become. Victoria is like a zombie, her co-ordination and balance deteriorate but the severity of her fits is frightening us all. Still plagued by ear and chest infections, she has very little quality life. Another low ebb. Our paediatrician suggested we learn to live with it. We seek a second opinion.
Eight years. After long discussions with our second opinion the Tegretol is changed for Epilim (200mg in 5ml dose BD). Within a couple of weeks we had a noticeable change. The fits stopped and our happy little girl reappeared, (current dose is 7mls BD due to greater body weight). During her fits Victoria had exhibited stroke like episodes. We now fear that these episodes may have resulted in further brain damage, as much she had previously learned had to be relearned. We changed our paediatrician.
At nine years old Victoria can crawl and is finally mobile. She can get in and out of bed, she is feeding herself and using a knife, fork and spoon and is enjoying her food immensely. She has began talking in two to three word sentences.
At ten years old Victoria has transferred to an excellent special school. She has a good comprehension and has benefited
greatly from her time at a normal school (especially speech). However during her middle years of epilepsy she lost a lot of schooling and we feel she now needs more specialized help. Victoria knows her alphabet, her colours and shapes and can count to twenty. She loves books and can recognize familiar words when looking at reading books. She has increased her concentration span and is learning to use a computer. Her speech is now in three to four word sentences and becoming clearer. She is still beset with infections, especially during the winter months. Like her brother she suffers from asthma, this is controlled with a daily dose with a preventative inhaler.
eff: 1997