#1
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My daughter is nearly 17 years old, was born with a VSD and profound deafness diagnosed at 2 years, then at 6 years ADHD, still struggled, to the point she is at residential school hundreds of miles from home. Finally today we have the diagnosis that I suspected 15 years ago. At nearly 17 years she has been diagnosed with mosaic downs syndrome, angry? I am furious, over the years have been accused of being a bad parent due to her behaviour, accused of faking her illnesses and that I must be doing something wrong due to repeated ear infections! I am stunned that for 15 years I have argued this and finally a peadiatrician who has dealt with it, all those lost years if feeling that I had let her down and people pointing the finger at her behaviour! Relieved of course I am, I am, not a terrible parent who can't love her child enough! Now I want to turn this in to something positive and seek to find some other parents in the same position- anyone out there?
#2
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I'm very sorry to hear its taking so long for you to find this is out about your daughter , i'd never heard of it and had quick look on-line and seems lot of people didnt find out until their child was older as well . My son has been seen since he was 7 months old and we're no closer to finding out what his problems are or what is wrong with him . He is nearly 3 years old , you've lived with this so much longer than what i have and i know how angry i get with no answers so i can guess how you feel . Hope everything works out for you's and i hope someone on here can help you out that is going through the same thing xxxxx
Single mum to a 14year old daughter and a son who is 3years old who has severe learning disability , hypotonia , hypermobility , visual impaired and sensory issues , he has showed me the meaning of life Heart and 3rd baby due 2nd of January 2012
#3
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Hi there
Sorry to hear it took you so long to get a diagnosis, I read a story in a magazine recently about someone whose child had this but wasn't diagnosed for a very long time and until then I'd never heard of it either. I had some similar issues with my middle son who didn't get diagnosed with his conditions till between 9 and 10 years although it had been obvious since before he was 3 that he had difficulties. No one listened, they all said he'd be fine and it was only when he had a new teacher in Year 5 who was stunned that he couldn't use scissors that a referral was made via the school nurse. Within a year he had 2 different unrelated diagnoses followed by brain surgery. I spent 7 years doubting myself, feeling like a crap parent & banging my head on brick walls trying to get someone to help him. For you to have lived through 17 years of that is unbelievable, well done you for getting through it and finally getting the diagnosis, it must have been horrendous for you. I hope things improve for you now and your daughter gets the support she needs.
Good luck
Jayne
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Thanks for the support guys, much appreciated, the diagnoses is not a surprise though so at least I don't have to deal with the emotional side of that. Where I feel badly let down by the health provision and education system is that it has taken so long to do, they provided this initial diagnoses years ago and then said not it wasn't MDS, this had a huge impact on schooling, family life and relationships etc... she will be fine. What I want to do is turn this into something positive and try and understand how many parents have their own understnading of their child ignored and belittled and then years later be proved right. Surely there must be something that as parents we can do to raise awareness and make health professionals take parental concern seriously in order to get the most appropriate support available for our children. Any thoughts anyone? ....
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(04-22-2011, 09:43 AM)getthekettleon Wrote: Hi there
Sorry to hear it took you so long to get a diagnosis, I read a story in a magazine recently about someone whose child had this but wasn't diagnosed for a very long time and until then I'd never heard of it either. I had some similar issues with my middle son who didn't get diagnosed with his conditions till between 9 and 10 years although it had been obvious since before he was 3 that he had difficulties. No one listened, they all said he'd be fine and it was only when he had a new teacher in Year 5 who was stunned that he couldn't use scissors that a referral was made via the school nurse. Within a year he had 2 different unrelated diagnoses followed by brain surgery. I spent 7 years doubting myself, feeling like a crap parent & banging my head on brick walls trying to get someone to help him. For you to have lived through 17 years of that is unbelievable, well done you for getting through it and finally getting the diagnosis, it must have been horrendous for you. I hope things improve for you now and your daughter gets the support she needs.
Good luck
Jayne

Thanks for that- I don't suppose you can remember what magazine as I would like to read the article- thanks


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