Treatment for Isaac
Donation protected
Isaac was born with Cerebral Palsy which led to having both physical and learning disabilities and kypho-scoliosis. Isaac was a very happy boy and loved life and the CP did not stop him from achieving. Isaac was able to manage school and had no behaviours/extreme OCD until suddenly aged 13 he caught a strep infection. Unknown to us at the time the strep infection led to an auto-immne response that attaked the body instead of the infection. This was damaging his brain. Isaac suddenly lost all ability to function, he had a sudden and extreme onset of OCD, tics, enuresis, severe anxiety, severe food restrictions, behavious regression, severe sensory issues (noise, light, touch), sleep difficulties, regression in all aspects, personility changes, inability to concentrate and many more symptons which came on practically over night.
One minute Isaac was a healthy and able teenager but suddenly his whole personality had gone. He did not know how to do anything he had previously and was confused all the time. He would go into an extreme behaviour episode which would last hours upon hours. He would not be able to remember anything about this afterwards.
This went on for two more years until we got a diagnosis of PANDAS (Pediatric Auto-immune Neuropsychiatric Disorders Associated with Streptococcal infections). This explained the onest of Isaac's symptons after a strep infection. We were told that he would grow out of this Pediatric condition.
We now know this not to be true.
We recently got some blood work results from a neurologist who specialises in auto-immune conditions.
We were told the time for treatment is over, it is too late to fully treat Isaac of PANDAS as he has had it for 7 years (severely).
Treatments such as long term antibiotics and IVIG may not cure Isaac of his PANDAS but it would help to give him a better quality of life and help to boost his immune system. Our recent blog post tells of why we need treatment for Isaac - https://ourpandasjourney.wordpress.com/2017/10/01/why-isaac-needs-treatment/
We want to stop further brain damage occuring to Isaac, the past year he has struggled with constant infections and has needed to spend nearly two months in hosptial due to the effect PANDAS is having on him.
Its hard to explain how Isaac was pre PANDAS but he had a complete personality change. We get glimpes of the past, we get some smiles and laughs, but they are gone in a second. It was literally like Isaac was here one minute and gone the next.
We love Isaac deeply and only want what is best for him, for now that is taking him to see a PANDAS specialist and getting Isaac treatment.
This treatment is not available for Isaac on the NHS as one doctor has deemed it to late to cure him. Surely Isaac should be allowed a chance to start healing and improving his quality of life without the constant tics, OCD, anxiety, regressions after each flare (a new infection), memory loss, further sensory issues (Isaac will close he eyes if someone passes him, screams at a whisper, screams that clothing is too noisy) and the extreme behaviours episodes which at last several hours and puts himself and his family at serious risk of harm. Isaac also picks his skin daily, he will not stop and has caused deep scars and infections from his picking. This is every part of his body. His feet are covered in sores, his face, lips, fingers and thumbs are peeling from the picking. No matter how much we try we can not stop him. He is causing serious harm to himself and opening up sores which opens him up to infections which in turn causes the PANDAS reaction.
We need to hit the restart button, help his immune system fight infections the way it is meant to and reduce the intensity of his symptons and behaviours.
Pease help us to fight for treatment for Isaac. Your donations will go to funding treatment for Isaac with the aim of healing Isaac. Thank you xx
Post PANDAS Isaac for the past couple of years struggled to look at people. Now he will close his eyes if you pass by him. He will also do this if you are talking to him but in front of hm. He will also scream that you are shouting when you may be whispering. The light bothers him and most of the time he wears sunglasses (even inside) and if you put the light he will scream for it to be turned off and wont open his eyes for several minutes if not more.
One minute Isaac was a healthy and able teenager but suddenly his whole personality had gone. He did not know how to do anything he had previously and was confused all the time. He would go into an extreme behaviour episode which would last hours upon hours. He would not be able to remember anything about this afterwards.
This went on for two more years until we got a diagnosis of PANDAS (Pediatric Auto-immune Neuropsychiatric Disorders Associated with Streptococcal infections). This explained the onest of Isaac's symptons after a strep infection. We were told that he would grow out of this Pediatric condition.
We now know this not to be true.
We recently got some blood work results from a neurologist who specialises in auto-immune conditions.
We were told the time for treatment is over, it is too late to fully treat Isaac of PANDAS as he has had it for 7 years (severely).
Treatments such as long term antibiotics and IVIG may not cure Isaac of his PANDAS but it would help to give him a better quality of life and help to boost his immune system. Our recent blog post tells of why we need treatment for Isaac - https://ourpandasjourney.wordpress.com/2017/10/01/why-isaac-needs-treatment/
We want to stop further brain damage occuring to Isaac, the past year he has struggled with constant infections and has needed to spend nearly two months in hosptial due to the effect PANDAS is having on him.
Its hard to explain how Isaac was pre PANDAS but he had a complete personality change. We get glimpes of the past, we get some smiles and laughs, but they are gone in a second. It was literally like Isaac was here one minute and gone the next.
We love Isaac deeply and only want what is best for him, for now that is taking him to see a PANDAS specialist and getting Isaac treatment.
This treatment is not available for Isaac on the NHS as one doctor has deemed it to late to cure him. Surely Isaac should be allowed a chance to start healing and improving his quality of life without the constant tics, OCD, anxiety, regressions after each flare (a new infection), memory loss, further sensory issues (Isaac will close he eyes if someone passes him, screams at a whisper, screams that clothing is too noisy) and the extreme behaviours episodes which at last several hours and puts himself and his family at serious risk of harm. Isaac also picks his skin daily, he will not stop and has caused deep scars and infections from his picking. This is every part of his body. His feet are covered in sores, his face, lips, fingers and thumbs are peeling from the picking. No matter how much we try we can not stop him. He is causing serious harm to himself and opening up sores which opens him up to infections which in turn causes the PANDAS reaction.
We need to hit the restart button, help his immune system fight infections the way it is meant to and reduce the intensity of his symptons and behaviours.
Pease help us to fight for treatment for Isaac. Your donations will go to funding treatment for Isaac with the aim of healing Isaac. Thank you xx
Post PANDAS Isaac for the past couple of years struggled to look at people. Now he will close his eyes if you pass by him. He will also do this if you are talking to him but in front of hm. He will also scream that you are shouting when you may be whispering. The light bothers him and most of the time he wears sunglasses (even inside) and if you put the light he will scream for it to be turned off and wont open his eyes for several minutes if not more.Organizer and beneficiary
Claire Harvey
Organizer
Claire Harvey
Beneficiary
