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Has anyone had any experience of CHARGE syndrome ? I mind a 13 month old child who has it and I'm trying to find out all I can about it . I've read up on it online and had meetings with his deaf teacher. Any information or advice anyone has would be much appreciated . Tia x
There are so many different specialists involved so the first thing would be to know which specialists he is seeing and what areas are affected as there are so many that can be?? Then the parents will need to keep you up to speed on what is happening. I would suspect he will have many many hospital appts ongoing. He obviously has hearing impairment, how severe is this? What about visual impairment? What other SEN does he have?Quote:
Originally Posted by *daisychain*
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Hi , he has moderate hearing in one ear so has an aid that he is always pulling out ! They have just found out he has a very small amount of hearing in his other ear so will soon be fitted for another aid. He has to lift his head right back to see above him , he is soon to have his heart checked . He was born with cleft lip and pallet that has been operated on and he is very chesty all the time coughing up lots in the mornings mainly . He can now sit for a little while unaided but doesn't like to for long periods .
At his last hospital appointment they were happy with his head , as they thought he may need to operate as his head is fused and was born with no soft spot , so that's good news for him :-) He is the size and development stage of a 6 months old .
He has appointments most weeks and mum is fantastic .
When he is with us he just likes to be comforted , lots of being held . He also adores our dog, when he's with her he makes the most noise and is full of smiles .
As a mum of a child who has a different syndrome but many of the problems are the same, all I can say is communication with parents is key. My DD's syndrome meant she was born with a cleft palate which meant she obstructed so needed to be tube fed and nursed quite differently to other babies. She had a successful palate repair at 1yr old but before that she had major failure to thrive problems due to the difficulties involved with feeding and the calories used just to eat. She went through a food phobia when she was a toddler due to her feeding problems as a baby and even now hardly eats what I call a healthy diet. She also wears hearing aids, she is moderately deaf and sees a teacher for the deaf at school, she also has major sight problems and has just recently had cryotherapy on her retina's. She is also hypermobile which has caused no end of joint pain in the past although this has got better since she started swimming. She needed years of S&L but was successfully signed off a year ago. She had a heart scan a couple of years ago as her syndrome means she could have valvular abnormalities but this was clear.
Basically how mum manages to work and manage all the hospital appointments I do not know. My DD's syndrome was one of the reasons I gave up work after she was born and subsequently became a CM. She is 7 now and our life is and always has been full of hospital appts and this little boys life I imagine is the same. So just make sure mum keeps you fully up to date with what is happening at each appt, she will advise on the practical care he will need.
xxx