should i keep searching for answers?

Karen - posted on 07/21/2012 ( 1 mom has responded )

Hi everyone,
I am a mother of 3 girls.2 of them my eldest just turned ten and my youngest almost four both have identical brain mri scans. They have severe abnormalities to the left hand side of their brains. They both have gliosis of the brain. A non cancerous tumor in the cortical sac and various other brain abnormalities that are too complicated too get into. So far the scan images along with the histories have been sent to various specialist in Seattle, Canada and the U.K. so far with no news other than the fact that it has never been seen before.The girls are almost identical in every way. They were both very delayed reaching any of their milestones as babies, not sitting independantly until 13 months.Weight bearing on feet 22 months. Walking at 30 months. Also both girls have difficulties with touch, smell and sound. For example a small beeping sound that i wouldn`t notice can cause momentary distress. Loud noises are a major problem. Brushing teeth, getting washed and dressed also cause big problems.My eldest is 10 and her head size is that of a 5 to 6 year old which would be the age that she behaves. My youngest is almost 4 and her head is the size of a 2 year olds which again be the age that her development is at. One of the few differences between the girls is my eldest has also got mild orthopaedic difficulties. Both girls are completely incontinent. My eldest has also got diagnosis of aspergers,adhd and dyspraxia also very evident in my youngest.Both girls also have extreme behavioural problems. The problem we are now facing as a family is weather we keep searching for answers or not. Going on previous MRI scans on my eldest the brain abnormalities are worsening and nobody knows just how bad it will get. We have no idea what is down the line for the girls and us as a family. They have done various genetic tests with no definative answer. My middle daughter has absolutely no problems. We have no idea yet if she is a carrier of this disease and wheather it will impact her children. All their lives my girls have been poked at and questions asked and have had so many investigations done with no real answer. The Health service have now decided there is nothing more they can do for them and do not have the resources to help them and are referring us to Great Ormond St. I just dont know if it wll be worth it to drag them to yet another so called team of specialists only to be told yet again that they just dont know. I know this is alot of info but if anyone has been in a similar situation any advice would be greatly appreciated
Thanks for reading this, its like a book!