#6
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Hi,
I know this post's been on here quite a while but still wanted to offer my support. My son has global development delay. He has had seizures since he was born and these only occur during sleep. He's 4 years old but still has no speech and struggles with his walking. However he's always happy and has lots of caring friend at his mainstream nursery.
The seizures started at just a week old so we have had test after test, MRI's, EEG's ect. We still have nothing to go on and for quite a while this got me down, but as times gone on I'm starting to accept that he's just my beautiful special boy and his name is Kurt, he is not named after a syndrome or disease.

Claire and Kurt
Stay Strong xx
#7
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My son Matt has been sick all his life. We got an original diagnosis a year a go but it doesn't explain everything so with regards to his stopping breathing we still have no idea why it happens and if it will ever stop. It's so hard sometimes as he doesn't look disabled but needs constant rescucitating and has variety of problems. It's a long battle but we all get there in the end. I jsut hate the waiting not knowing why my son is so sick. They have told us he has a life-threatening condition but not sure why he has it x
Heart Mum to Abigail 8 & Matthew 4. He stops breathing & needs to be resucitated. Has Bulbar Palsy & was born with a hole in his stomach, has mic-key tube fitted. Matt has heart/lung problems and is also tube-fed.
#8
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My little boy is 3 and his problems were picked up at birth (and we realised I had all the same problems too after birth and still struggle with things today) but we still don't have a diagnosis. He has many problems including Severe Hypotonia, swallowing problems, motor milestones are delayed, muscle fatiguing breathing problems while sleeping, inability to fully close his eyes while sleeping and loads more issues. The closest we have come to a diagnosis is the possibility that it could be Congenital Myasthenia Syndrome which is a group of about 50 gene mutations which are extremely rare however we have been told that they may not find a specific diagnosis for us and we just have to wait and see. We are currently waiting for an appointment at a specialist hospital in Oxford.

Although a diagnosis won't change the level of care Paul receives, I think it would help me to explain things better and also for a better understanding of prognosis.
#9
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We found out my daughter had problems from 20months
And now she is 6 years old
We has chromosomes ,EEG,ECG, MRI scan
nothing shown up (thank god)
And they ruled out siesures but left open door if anything else happens
they tested her for dyspraxia that was just ruled out recently from it
All we know that she has a learning disability
And don't know if they doing anymore test or what's happening
But we see paediatrician soon
Heart mum of 2 Heart


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