I have a daughter named Ashley who has just turned three years old who has semi-lobar HPE. At birth it was noted that her head circumfrance was small and there was an absence of soft spots, probably due to the microcephaly. We were sent to a neurosurgeon who ran a CT scan and told us point blank "Your child is retarded, I can't do anything for her." As many of you I am sure know, I immediately felt that all was hopeless. As a newborn and until she was nearly one Ashley cried incessantly and was so stiff I had to carry her like a board. She did not receive any EI services until she was nine months old after we had switched primary care physicans. At three she a wonderful and sweet child with alot of energy and happiness to share with everyone. She always has a smile for her loved ones. She does have problems sleeping and eating. She currently sleeps on my chest at night. She does not have a G tube which I am very thankful. We had been giving her pediasure and she was not gaining any weight, when a naturopath friend of my mothers suggested goat milk (it has added calories and magnesium which is helpful with high tone)and black currant oil(which helps enormously with the constipation. She gained three pounds in 6 weeks on her new diet and her tone has decreased immensely. I recommend this to anyone who is looking for an alternative to a feeding tube. Ashley also bites herself severely and anyone who gets in her way. She is currently learning to drive a head operated wheel chair but hates having her feet in flexion and restrained. If anyone has any ideas how to make her more comfortable in a seated position I would appreciate them. She loves to stand in her gait trainer and loves watching t.v. (especially the teletubbies),being held and music. Does not like being left alone or restrained in the car or wheelchair. She is a wonderful child and I pray that she will be with us for a very long time.