Thank youSo sorry but he won't let me take a photo of him with the quilt, he's at that age 16 where he thinks photos aren't cool, but he really is made up with it, so thank you once again it is on his bed xx
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BiographyIn pregnancy Mason came back spina bifida and Down syndrome. I had the option to terminate or have the amniocentesis which I went with. The amniocentesis came back fine.
Everything comes to light now on how Mason has always been since birth. He was milk intolerant, never slept, he woke through every hour until he was 18 months old. He had speech delay, so had speech and language at age 5, constantly had tonsillitis and went on to have tonsils and adenoids out with grommets at age 4. He’s always struggled through school with maths, spellings and writing and had to have grippers put on his pencils as he didn’t have the pressure to write.
We moved area when Mason was in year 3 at primary school and changed his school. He never took to this school at the beginning and we constantly got calls saying he wasn’t feeling well and had headaches for 3 weeks. I didn’t think anything of it, I just thought it was with the change in school. He’s always been able to get in a red hot bath and never put any cold water in and yet again just thought it was the way Mason was.
I've always had problems with Mason and frustration and the way he was from around 6 years old and took him to the doctors on numerous occasions to keep getting told it was behavioural problems. I could relate to Mason’s frustration as I know that’s how I get when I’m due my vitamin b12 injection as I’m pernicious anaemia. When he was 13 years old I took him again and asked for blood teststo check his b12 levels. At age 14 he went on to develop loss of feeling in his left hand and just thought he had pulled something until he went on to break his wrist playing football. After his cast came off Mason complained of having no feeling in his full left hand/arm so took him back to the doctors and got the blood test done and he was b12 deficient plus folate, iron and vitamin D. It took months to treat him and start him on injections but this loss of feeling never came back - neurological damage can take months to years to correct and if left too long is irreversible. They then sent him for an MRI on his spine and I got a call the day after to say they had found a large syrinx in his spinal cord, and asked would I take him for a brain scan and another scan on his spine with the contrast dye. I got the results the same day to say he also had Chiari malformation and he went on to have brain surgery in February 2018. Ever since that he’s developed more problems and symptoms. Unfortunately his first surgery hasn’t made a difference to his syrinx which is almost full length of his spinal cord and 11mm diameter. He then went on to develop palpitations in March 2018 which we were told sounded like mini panic attacks and he then started with nausea and sore throats every single morning. We were given a heart monitor to pick these palpitations up in March 2019 and in May Mason collapsed in his bedroom at 3.30am. He came in to my bedroom and said he didn’t know what had just happened as he went to get his drink and next minute woke up on the floor. In A&E his blood pressure was only 87/66, since his surgery we were told his blood pressure is low but it’s normal they say for teenagers. The heart monitor results were looked at by the cardiologist and they have picked up orthostatic hypotension but his paediatrician thinks that he’s got postural tachycardia so we are now waiting to see the cardiologist. This has caused Mason a whole range of problems and depression which we have been awaiting CAMHS since last August.
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