We took Daniel for an initial consult with a Pediatric Neurosurgeon on Tuesday May 19, 2015. Daniel has been experiencing increasing muscle spasticity and it can be painful and upsetting at times. It has also impaired him in every activity in his life, school, therapy, swimming, activities with his hands, standing in the stander, etc.
His physicians have basically all agreed that the oral baclofen medication, given via his g tube, is not helping the episodes of extreme spasticity as much as it should. What they suggest is a surgery where they insert a little pump into Daniel's body and it will deliver medication directly to his spine. It's called "Intrathecal Baclofen therapy" via a Baclofen Pump. This is a procedure that results in significant improvements for people dealing with muscle spasticity.
The doctor said with kids like Daniel, who have so much metal in their spine, they can't do the prescreeing test (a needle to the spine) so it is a "Leap of Faith". Those were his words.
I am trying to stay positive, but this will be one more significant thing for me to manage and be responsible for in order to keep my son comfortable. Any surgery is scary.
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Baclofen Pump??? What is it?
Baclofen pump implantation is a surgical procedure performed to permanently implant a pump that delivers baclofen to the spinal fluid to treat severe to moderate-severe spasticity that is refractory to oral medications. It continuously delivers baclofen in small doses directly to the spinal fluid, increasing the therapeutic benefits, and causing fewer and less severe side effects compared to the oral medicine.
What is its goal?
The aim of the operation is to decrease spasticity related to multiple sclerosis, spinal cord injuries, or other neurological diseases.
About my channel.......
My middle son, Daniel John Hasselberger was born on November 22, 1997, with a rare brain deformity called Polymicrogyria. The deformity happened due to a virus called CMV, or cytomegalovirus. He has seizures, respiratory problems, can only eat by g tube, is in a wheelchair, can not speak, and has had countless surgeries and hospitalizations over his 17 years. We are a family of 5 from Sandy Hook, CT and this is our journey.
Every day is full of new things that we don’t expect. I am Julie, Daniel’s Mom. I left my full time career as an HR Director 12 years ago because Daniel needed me. The struggle, the sacrifices, the sibling love, and miracle after miracle.
Why did I create this channel? For support, to help other families dealing with the same diagnosis, to help me cope with depression and isolation, etc. Please leave comments and help us grow and develop this channel. Life is incredible, and I want to share our story.
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