Hi. This is my first time posting but I have ready many of the messages and you all seem so supportive and helpful I have finally plucked up the courage to post. My dd will be four months tomorrow and has no vision. She has also been diagnosed with global development delay, being hypotonic and also query a movement disorder. We have been to Great Ormond Street , who were fantastic, and had the eye tests-VEP and ERG- and everything is working and they think it is delayed visual maturation. Does anyone have any experience of this- I love her to bits but am finding it so hard to keep positive and though she smiles a lot I just wish she would look at her mummy and daddy.
She was late in opening her eyes is this something that happens with developmental delay?
Deep down I am worried that she has cp and that she will never get her sight. She has had two MRIs now-the first was when she was in SCBU -she was admitted day after she was born as they were querying seisures and she was hypertonic. Both MRIs were fine but she did wobble on the second one. One of her consultants said that they can't shoe myelination but looking at some of these messages here you can??She was discharged after 11 days but we weren't given any support advice and just told watch for milestones so it has all been a huge shock for us.
She has a brain EEG on Monday and physio on Tuesday and will be seeing a neurologist at GOS on the 12 Nov. All metabolic tests and chrosome checks have drawn a blank. One consultant at our local hospital saw her a few weeks ago and wrote her off and said she must have damage to her basal ganglia and inferred she would be in a partial 'vegetative state' His words-we will be lodging a complaint. Now the MRI results have come back he has said she doesn't have this damage and has said the floppiness could be due to the delay or cp.Though he said she is not exibiting CP movements.She can lift her head from the floor, grasp things and is very strong and smiles at silly faces. I do think she is quite jerky in her movements but as she is first child am finding it difficult to know what is 'normal' or not. She has always seemed different to the other babies but this may be due to her blindness.
I love her so much but am just finding it a bit overwelming at times and her lack of sight has devastated us. Any advice would be greatly appreciated and sorry this is such a ramble and I hope I haven't offended anyone. Thank you x
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delayed visual maturation and cp
19 replies
tashm · 03/11/2007 12:06
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