- J
- H
My son Hunter was what you would imagine when you pictured any active 12 year old boy. He was excelling in 6th grade and on track to graduate and have a great summer doing the things he loves like hanging out with his friends, fishing and spending time on his dad's boat, time on the beach, and enjoying everything a Florida summer has to offer.
Unfortunately, those plans changed very suddenly in early May. On a Thursday Hunter began complaining of a "weird" feeling in his legs. We chalked it up to growing pains, but by early the next week we realized something much more serious was happening. In a matter of a few days, the weird feeling Hunter was experiencing turned to numbness and finally resulted in him losing the ability to walk. We took him to his doctor who sent us directly to the ER. From there we were sent by ambulance to Orlando and admitted to Advent Children's Hospital (formally FL Children's Hospital).
Hunter received multiple tests including numerous MRIs and a spinal tap. The tests showed inflammation in the coating of his spinal nerves and his spinal fluid had elevated proteins which lead us to a diagnosis of Guillian-Barre Syndrome. A very scary auto immune disease triggered by an illness (in Hunter's case, a simple stomach flu) was causing his own body to attack the nerves in his spine, interrupting the single from his brain to his body, paralyzing him. He was given the standard treatment which is Intravenous Immunoglobulin Therapy. After 5 courses of the IVIG, Hunter was discharged from the hospital and on his way to recovery.
The long term rehabilitation for GBS usually takes most people 12 months. He was receiving physical therapy and occupational therapy 3 times a week and doing absolutely phenomenal. He was interdependently walking and showering again within two weeks of our discharge and his dad and I were both really positive about the recovery he was making. He wasn't able to finish school but because his grades and attendance were so good, the district was able to push him through without hassle to the 7th grade.
Now we are unsure if he will be able to attend school this fall because tagically, the miraculous recovery we thought our son was making was short lived. 4 weeks after our initial discharge, I began to notice Hunter presenting the same symptoms he had shown at the beginning of his initial GBS flareup. We took him directly back to Advent Hospital where he was admitted again and had more diagnostics and MRIs done. Ultimately, they gave us 2 more rounds of IVIG Therapy. 3 days later we were discharged and Hunter was walking with a walker.
Because GBS has a very very very low percentage of relapse, the possibility of a misdiagnosis is now on the table. Our plan of action currently is to keep a vigilant eye on his progress. The IVIG therapy will mask symptoms of other demyelinating diseases (The list is long, terrifying, and includes MS and ALS) for about 4 weeks. After 4 weeks, if he relapses again, the neurological team wants to continue other diagnostics. Their terrifying words to me before we left the hospital was "Our team is VERY aware of him."
As a mother, I am at my wits end emotionally and also financially. Hunters father and I both own are own businesses and do not have health insurance. We also do not qualify for Medicaid.
IVIG is very expensive. One treatment can be in the $25,000 range and he has had multiple. Occupational and physical therapy is also expensive, as is the follow up neurological appointments and medications. On top of those unexpected expenses, his dad and I have had to each piggy back a part time work schedule in order to be home with him to ensure he doesn't slip and fall, as his gate is not normal and his muscles are still very weak and he can't be left on his own. We have exhausted what savings we had and the hospital bills and recovery therapies are a piling expense.
I am humbling asking my friends and family that are in a position to do so to help offset the ever growing costs associated with his current bills and also any upcoming hospitalizations we may be facing in the future. I love you all, and appreciate everyone who has reached out to me during what has most absolutely been the most stressful time of my life. Thank you so much and I love you all so much.<3
Unfortunately, those plans changed very suddenly in early May. On a Thursday Hunter began complaining of a "weird" feeling in his legs. We chalked it up to growing pains, but by early the next week we realized something much more serious was happening. In a matter of a few days, the weird feeling Hunter was experiencing turned to numbness and finally resulted in him losing the ability to walk. We took him to his doctor who sent us directly to the ER. From there we were sent by ambulance to Orlando and admitted to Advent Children's Hospital (formally FL Children's Hospital).
Hunter received multiple tests including numerous MRIs and a spinal tap. The tests showed inflammation in the coating of his spinal nerves and his spinal fluid had elevated proteins which lead us to a diagnosis of Guillian-Barre Syndrome. A very scary auto immune disease triggered by an illness (in Hunter's case, a simple stomach flu) was causing his own body to attack the nerves in his spine, interrupting the single from his brain to his body, paralyzing him. He was given the standard treatment which is Intravenous Immunoglobulin Therapy. After 5 courses of the IVIG, Hunter was discharged from the hospital and on his way to recovery.
The long term rehabilitation for GBS usually takes most people 12 months. He was receiving physical therapy and occupational therapy 3 times a week and doing absolutely phenomenal. He was interdependently walking and showering again within two weeks of our discharge and his dad and I were both really positive about the recovery he was making. He wasn't able to finish school but because his grades and attendance were so good, the district was able to push him through without hassle to the 7th grade.
Now we are unsure if he will be able to attend school this fall because tagically, the miraculous recovery we thought our son was making was short lived. 4 weeks after our initial discharge, I began to notice Hunter presenting the same symptoms he had shown at the beginning of his initial GBS flareup. We took him directly back to Advent Hospital where he was admitted again and had more diagnostics and MRIs done. Ultimately, they gave us 2 more rounds of IVIG Therapy. 3 days later we were discharged and Hunter was walking with a walker.
Because GBS has a very very very low percentage of relapse, the possibility of a misdiagnosis is now on the table. Our plan of action currently is to keep a vigilant eye on his progress. The IVIG therapy will mask symptoms of other demyelinating diseases (The list is long, terrifying, and includes MS and ALS) for about 4 weeks. After 4 weeks, if he relapses again, the neurological team wants to continue other diagnostics. Their terrifying words to me before we left the hospital was "Our team is VERY aware of him."
As a mother, I am at my wits end emotionally and also financially. Hunters father and I both own are own businesses and do not have health insurance. We also do not qualify for Medicaid.
IVIG is very expensive. One treatment can be in the $25,000 range and he has had multiple. Occupational and physical therapy is also expensive, as is the follow up neurological appointments and medications. On top of those unexpected expenses, his dad and I have had to each piggy back a part time work schedule in order to be home with him to ensure he doesn't slip and fall, as his gate is not normal and his muscles are still very weak and he can't be left on his own. We have exhausted what savings we had and the hospital bills and recovery therapies are a piling expense.
I am humbling asking my friends and family that are in a position to do so to help offset the ever growing costs associated with his current bills and also any upcoming hospitalizations we may be facing in the future. I love you all, and appreciate everyone who has reached out to me during what has most absolutely been the most stressful time of my life. Thank you so much and I love you all so much.<3