Helping Hayden’s brain heal!
Donation protected
In August 2017 Hayden was just turning 2, instead of celebrating, our lives changed drastically for the worse.
Hayden reacted severely to a chicken pox vaccine.
He erupted with chicken pox up his right arm & started having absent seizures, involuntary abnormal movements & rapid blinking. Within just over a week he had deteriorated to loss of balance, buckling knees, stopped saying any words or communicating with us, didn’t seem to know who anybody was anymore even Daddy, his sister & Grandparents he only seemed to know me (Mummy).
A severe movement disorder started, along with grunting & shrieking. Hayden could not stay still, he was consumed by movement day & night. He would move constantly until he dropped from exhaustion, normally around midnight/1am.
He wouldn’t allow his sister near him, there is 18 months between them & they were inseparable but he constantly pushed her away. He lost the use of his right hand & arm & would scream & cry in pain at it.
He couldn’t stand daylight & would shield his face from the light crying. He was awake hours in the night screaming holding his head & getting our hands & pushing our hands into his head.
Our local hospital had no idea what was going going on with him & instead of treating for encephalitis tried telling us our son had turned autistic........ overnight!!!
We finally had bloods back that revealed Hayden had through the roof varicella titres & high platelets indicating his body had reacted severely to the varicella. He was then getting full body nerve pain especially in the legs & feet. He stopped walking outside completely.
After 3 long months of no help or treatment we finally found a paediatrician who diagnosed PANS.... Paediatric Acute-onset Neuropsychiatric Syndrome an auto immune disease where Haydens antibodies attack his brain & finally Hayden was referred for tertiary care.
Hayden began tertiary care treatment in March 18 and has had anti inflammatories, long term antibiotics, a high dose steroid protocol over 8 weeks, 2 High Dose IVIG treatments which involves the infusion of donor antibodies & intravenous steroids followed by more oral steroids.
This treatment has allowed Hayden to start pre school something that seemed impossible 6 months ago & although he needs one on one care he is coping well in the pre school environment when pain free, It has given him a chance to live periods pain free stopping his horrific headaches & massively reducing his movement disorder enabling him to try & join in with activities.
He still has no speech but is learning to communicate with us in other ways. He still suffers sporadic pain bouts & we still can’t get Hayden walking regularly outside but we hope with more treatments these things will come.
Haydens 3rd IVIG has been turned down because of cost & supply issues within the NHS. To stand any chance of beating this illness, recovering his brain & stopping permanent brain damage Hayden needs more intensive treatments IVIG being one of those treatments.
We are looking into continuing Hayden’s treatment privately but it is a very expensive option especially as we have no idea how many IVIG’s he will need. We are also looking into IVIG options abroad to get Hayden the treatment he deserves.
One little boy & his family are extremely grateful for the donations & fundraising that is being done for him. Thank you
Hayden reacted severely to a chicken pox vaccine.
He erupted with chicken pox up his right arm & started having absent seizures, involuntary abnormal movements & rapid blinking. Within just over a week he had deteriorated to loss of balance, buckling knees, stopped saying any words or communicating with us, didn’t seem to know who anybody was anymore even Daddy, his sister & Grandparents he only seemed to know me (Mummy).
A severe movement disorder started, along with grunting & shrieking. Hayden could not stay still, he was consumed by movement day & night. He would move constantly until he dropped from exhaustion, normally around midnight/1am.
He wouldn’t allow his sister near him, there is 18 months between them & they were inseparable but he constantly pushed her away. He lost the use of his right hand & arm & would scream & cry in pain at it.
He couldn’t stand daylight & would shield his face from the light crying. He was awake hours in the night screaming holding his head & getting our hands & pushing our hands into his head.
Our local hospital had no idea what was going going on with him & instead of treating for encephalitis tried telling us our son had turned autistic........ overnight!!!
We finally had bloods back that revealed Hayden had through the roof varicella titres & high platelets indicating his body had reacted severely to the varicella. He was then getting full body nerve pain especially in the legs & feet. He stopped walking outside completely.
After 3 long months of no help or treatment we finally found a paediatrician who diagnosed PANS.... Paediatric Acute-onset Neuropsychiatric Syndrome an auto immune disease where Haydens antibodies attack his brain & finally Hayden was referred for tertiary care.
Hayden began tertiary care treatment in March 18 and has had anti inflammatories, long term antibiotics, a high dose steroid protocol over 8 weeks, 2 High Dose IVIG treatments which involves the infusion of donor antibodies & intravenous steroids followed by more oral steroids.
This treatment has allowed Hayden to start pre school something that seemed impossible 6 months ago & although he needs one on one care he is coping well in the pre school environment when pain free, It has given him a chance to live periods pain free stopping his horrific headaches & massively reducing his movement disorder enabling him to try & join in with activities.
He still has no speech but is learning to communicate with us in other ways. He still suffers sporadic pain bouts & we still can’t get Hayden walking regularly outside but we hope with more treatments these things will come.
Haydens 3rd IVIG has been turned down because of cost & supply issues within the NHS. To stand any chance of beating this illness, recovering his brain & stopping permanent brain damage Hayden needs more intensive treatments IVIG being one of those treatments.
We are looking into continuing Hayden’s treatment privately but it is a very expensive option especially as we have no idea how many IVIG’s he will need. We are also looking into IVIG options abroad to get Hayden the treatment he deserves.
One little boy & his family are extremely grateful for the donations & fundraising that is being done for him. Thank you
Co-organizers (3)
Wendy Ayres
Organizer
Cheryl Biggs-Grubb
Co-organizer
Maria Graciela Fernandez
Co-organizer