Hi
I am a grandmother and full time carer of my 16 year old granddaughter who has autism and global delay, she has just been diagnosed with a pineal cyst after an Mri result. I was told only yesterday, it was a shock and I had a good old cry as I was so scared for her as she is showing symptoms, severe debilitating headaches, vision problems, pins and needles etc... Her pineal cyst is 11x10x9.
I was very angry as the Peadiatrician was out of the country for six weeks and left no support or correspondence for us, he had requested a further scan at a hospital 100 miles away, which I knew nothing about. I had phoned his secretary to find out if the results had come back from the first one. The consultant from the specialist hospital 100 miles away could not give me any information as my granddaughter was not his patient it was only a request to use their facilities. Another scan would take 3-6 months as she needed an anathstetist due to her condition !!!
I was at my wits end but got myself together sharpish and insisted on speaking to another doctor, to no avail, he couldn't tell me anything but what he saw in my granddaughters notes. I had stopped crying and steely determination took over, I respectfully requested an earlier scan due to the dibilitating symptoms and my granddaughters lack of communication. She is the most beautiful young lady with an endearing personality and great sense of humour.
We had another call after I phoned the hospital again to let them know how wrong this was and how I wanted something doing, we are now waiting on a phone call from the specialist hospital for an earlier scan.
What ever happens just muster up all the strength and steely determination that all mums posess and respectfully request answers or treatment that you, your family and especially your daughter so deserve. Compliment this with the knowledge of medical professionals while trusting your gut instinct, remember that children with autism are very factual and honest, read your daughter by words and body language. Trust in yourself and act on behalf of her. I wish you well not luck, don't be scared be strong. You go mum x
PS have you heard of the son rise programme? It's fabulous we worked as a family following this principle, don't expect your daughter to come into your world first, it's too scary. Go into her world, if she growls then you growl, if she wants to dicect berries from a bush while lying on the grass instead of being pushed on a swing in the park, then lie down with her and join in, this encourages eye contact. Don't even think about the other parents. The more you go into her world she will begin to trust you and hold your hand while she very slowly comes into yours.
Kind regards
Julie
Hi,
How are you? A pineal cyst is a fluid-filled growth inside the pineal gland. This is usually benign in nature and asymptomatic. However, a cyst may enlarge and press on surrounding structures causing symptoms such as headaches and vision problems. At this point, watchful waiting is usually done. If these symptoms occur, the cyst can be removed using surgery. Check with her doctor for proper management of her autism. Take care and do keep us posted.