BiographyRiver Willow-Louise (known as Bean) was born at home and everything seemed well. Within day sit became apparent that Bean was struggling to feed and was having small seizure type moments which the health professionals put down to withdrawal from my medication. Three months on and we were being referred to the local hospital,to Addenbrookes and then a SALT who specialised in feeding issues. Feeding every two hours day and night, she was dx with silent reflux and medication was started but it made no difference.
EEGs appeared normal though the frequent staring episodes we were seeing said otherwise. At six months, we found Bean blue and floppy in her crib. We resuscitated her at home and we were rushed into hospital where she was found to have pneumonia, thought to be caused by aspiration. As she recovered from this we started weaning; the instant vomiting or screaming for several hours after even the tip of a teaspoon made this near impossible.
She was referred to a dietician and we continued to try once, twice, three times a day, each resulting with her either being violently sick or screaming after several hours. She was admitted to hospital in June 2011 to be monitored and after blood and urine tests came back abnormal, alongside a failure to grow and the loss of weight, she was referred to the metabolic team at GOSH. On the 17th October we moved to NGfeeding but she has continued to gradually lose weight although it has been fantastic for the giving of medicines and minerals etc.
By now we had also noted drop attacks and clusters of jerks. In October these started becoming more frequent and she also started having what we now know to be right sided focal seizures. An emergency MRI scan ruled out tumours or anything which was such a relief but the rate and intensity of the seizures has continued to increase. Over Christmas Bean started holding and hitting her head whilst screaming for hours. At the hospital they felt that this is another seizure type and prescribed codeine to help control the pain and it sedates her through them.
At the moment we are due to see the metabolic and neurology teams at GOSH in Jan/Feb and are awaiting an appointment with their Gastro team. Through all of this, Bean has remained a happy, and very cheeky, little girl who loves animals, cuddles and anything pink or purple!
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