my daughters story
She was born a nice healthy 8lbs 2oz full term and a normal delivery. Already had her name picked Leigh-anne totally georgous. She was a lovely baby slept through the night by the time she was 4 weeks old.
I never knew i had her she was so good till she started primary school then turned into a little monkey.
She went through school and got to her 10th birthday pretty much no hiccups hardly went to the doctors and up till this point she was slow at gaining weight thought nothing of it though she was never grossly underweight just my little skinny minnie and my angel.
Then my sister in law had to run away to a refuge to escape an abusive partner and i told both my kids not to go near him in case he quizzes them they always insisted they knew nothing but i told them he didnt know that.
Then it started the vomiting and being on the toilet all the time you know how it is this went on for about 8 weeks with many visits to the doctor it was basically said its probably something she will have to put up with till puberty. Untill the rash arrived on her legs looked like insect bites without the little dot in the middle where the bite is. We were sent straight to hospital basic tests done and eventually told the not so good news. Had to do the camera tests to confirm diagnosis.
A few months later she got an abcess and had to go to theatre to have 15mls of puss removed by this time she was put on azathiopren .
Its healed now after 2 1/2 years with numerous doses of inflixamab (not to sure on spelling) which carries many risks at worst being death by infection as this drug reduces the immune system so much but it worked. Until now the skin in the same area is starting to break down again so emotions are pretty high all round.
Shes 13 now well 14 in July and its been a rollercoaster of an emotional ride over the past few years so if anyone out there can give me some advice it would be apprieciated. :smile:
She was born a nice healthy 8lbs 2oz full term and a normal delivery. Already had her name picked Leigh-anne totally georgous. She was a lovely baby slept through the night by the time she was 4 weeks old.
I never knew i had her she was so good till she started primary school then turned into a little monkey.
She went through school and got to her 10th birthday pretty much no hiccups hardly went to the doctors and up till this point she was slow at gaining weight thought nothing of it though she was never grossly underweight just my little skinny minnie and my angel.
Then my sister in law had to run away to a refuge to escape an abusive partner and i told both my kids not to go near him in case he quizzes them they always insisted they knew nothing but i told them he didnt know that.
Then it started the vomiting and being on the toilet all the time you know how it is this went on for about 8 weeks with many visits to the doctor it was basically said its probably something she will have to put up with till puberty. Untill the rash arrived on her legs looked like insect bites without the little dot in the middle where the bite is. We were sent straight to hospital basic tests done and eventually told the not so good news. Had to do the camera tests to confirm diagnosis.
A few months later she got an abcess and had to go to theatre to have 15mls of puss removed by this time she was put on azathiopren .
Its healed now after 2 1/2 years with numerous doses of inflixamab (not to sure on spelling) which carries many risks at worst being death by infection as this drug reduces the immune system so much but it worked. Until now the skin in the same area is starting to break down again so emotions are pretty high all round.
Shes 13 now well 14 in July and its been a rollercoaster of an emotional ride over the past few years so if anyone out there can give me some advice it would be apprieciated. :smile:
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