Blood tests as usual today and Shay was booked into Watford general for his blood transfusion tommorow as his counts have been diving lately. Then his blood counts came back and our little man has decided against a transfusion this time round. His hb has now actually gone back up from 7.1 to 7.4 even his community nurse was amazed. They are going to do another blood test next week as its still on the verge but to us this shows that his marrow is still trying to fight back and work how it should which is only a big big plus for Shay.
Hb 7.4
Platelets 114
Neurophils 0.13
Shay's neurophils are the lowest they have ever been this is now a big worry for us as he becomes more prone to infections especially chicken pox which has started making its rounds within the local nurserys.
About Me
- Shay
- London, United Kingdom
- Welcome to Shay's story and thank you for taking the time to find out how Shay is doing. It is a place to share our hopes, sadness and the happy times that our little man has. Shay in April 2008 was diagnosed with Pearson's Syndrome a Mitochondrial disease with no cure. Pearson syndrome is very rare, less than a hundred cases have been reported worldwide. It characteristically present in early infancy with pallor, failure to thrive, pancytopenia and diarrhoea. Additional manifestations often include progressive external ophthalmoplegia, proximal myopathy with weakness, and neurologic disturbances. Multiple organ involvement is quite variable. Most infants die before age 3, often due to unremitting metabolic acidosis, infection, or liver failure. Those few individuals who can be medically supported through infancy may experience a full recovery of marrow and pancreatic function. These children eventually undergo a transformation from Pearson's syndrome to Kearns-Sayre syndrome with the development of ptosis, incoordination, mental retardation and episodic coma. Life as we use to know it I cannot remember. We have to live in hope that a miracle will happen for our son.
\good news about the blood count. We will ensure that all our other parents let us know if they come into contact with anyone who has or had chicken pox.
ReplyDeleteOn his new shoes we will have to look out for small hands on the floorQ!
Mick & Sally (Shay's Childminders')
Hi Sharon,Alan.Chrissy and Shay
ReplyDeleteHope every think is ok with Shay lets me know what is going on he is a strong little man and cheeky love and god bless you all
love from Sherylyn Sharon and Catherine xxxxx
See you soon