#1
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hello all,

i am new here my boy is two soon, he has H.I.E/ born with it due to placental abruption, and my wife being left to bleed..... anyway another story sorry.

The prognosis was very bleak indeed at first, however, he has amzed all. Although this is where i would greatly appreciate everyones help, opimions and advice as we feel we are begining to learn more and see more the more he grows and gets older.

We have no black and white official diagnosis as yet to other specific conditions, apart from GDD/GERD. but he does drool and omly crawls he shoes no sign of walking, seems to have flat turned out feet lot times, drools constantly too. He omly says dada,ta, lala for his sister, and waves and points.

One thing for sure god he has a temper, when he cant get something or doesnt get it. he screams and screeches for things. wants constant attention from mummy and daddy ie picked up always.
Apologies for the detail, but i am just trying to give you all detail, so you can hopefully give your help or opinoin from knowledge or experience

many thanks mikey
#2
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hi and welcome to the forum Smile
Have you had any contact with a community paediatrician? i think they would be your first point of contact if you are seeking a more formal diagnosis. does your son have any input from any services such as physio? or occupational therapy? did he spend any time in special care?

hope to hear from you soon Big Grin

lucy xx
#3
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yeah sorry, he has a cdc team, review coming soon. awiting new date, had one at 9 months. physio has lot input, we mentioned his behaviours before at times etc, but we not had real chance to put across to aconsultant p.
#4
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Hello, when you the CDC review be prepared to tell them everything no matter how trivial it may seem. It's great that you have the review now the's time to ush forward. Where we are takes ages, Matt's nearly 4 and we have no official diagnosis to what causes him to stop breathing so know how frustrating waiting can be. If communication is a real problem then hopefully you cna see a speech therapist. Matt had trouble communicating and we started using sign language just after his 2nd birthday. It took a long time and lots of practice but ti meant matt could communicate with us. Hope this helps xx
Hello, when you the CDC review be prepared to tell them everything no matter how trivial it may seem. It's great that you have the review now the's time to ush forward. Where we are takes ages, Matt's nearly 4 and we have no official diagnosis to what causes him to stop breathing so know how frustrating waiting can be. If communication is a real problem then hopefully you cna see a speech therapist. Matt had trouble communicating and we started using sign language just after his 2nd birthday. It took a long time and lots of practice but ti meant matt could communicate with us. Hope this helps xx
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.


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