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What about vitamin A to slow down the vision loss? I read it on the internet

Thank you Bottesini. What about gene treatment? Are there any promising news for the cure of the vision loss? I really do not know where do get an ERG I guess at special hospitals right?

In type I what could one expect? I mean what is the possible age

Is it possible that the difficulty to see at night occurs later on?

No I have not noticed any difficulty at night

Hello, I would like to ask whether there is any experience with Usher... my son is 4 years old, has a cochlear implant and some difficulties in balance. He was also diagnosed with myopia. Genetic testing came out OK. Doctors insist that there is no reason to worry but I read about Usher and Iam...

Thanks guys, I shall contact them as you suggest iowaboy so I can find out what their services are like here in Greece. Any drawbacks??

Is there any experience with the advance bionics implant? Our doctor recommended it for the implantation of my son. Is it reliable, good quality, with good service etc?

Now another little issue, maybe it would be the same with a hearing toddler, however in the case of my deaf boy I cannot find the way to explain to him: he keeps waking up in the night, getting out his crib on his own and wanting me and then looking for toys. When he does this he seems...

Thank you guys for the posts! Yes we all sign and my son signs to everyone (even to kids in the street). I understand that his stress is part of growing up however I find it difficult to explain that I'll be back so he can start coping with it. He has no comforting items (blankets, teddies etc)...

My 22-month old deaf boy is having a hard time to cope with my departs. I have to leave him with my mother for 2 hours every day and he is really upset. He generally seems very attached to me and I guess that he cannot understand that I will be back. I have tried signing to him that I'll be back...

As the doctors told me, this may as well happen. Differenent symptoms appearing later in life. Or even a syndrome that has not been thoroughly studied yet so the scientists cannot identify the metallaxis in DNA.

I totally agree... He is a wonderful boy I adore and would not "change" with any hearing kid in the world. I just want to know whether there are other medical issues we should watch out for. It's not an offense to the Deaf or not accepting that a child is deaf to look for cause and associated...

Do you know his username?

no breathing issues. Lots of allergy tests(normal), dermatologists do not know what the rash is. Genetic testing OK (DNA normal, no syndromes). Eyes OK...

Thanks GrengdelQ, so I guess that since my boy's ear and brain scans (MRI, CT) are clear, the tumours are ruled out and so is neurofibrosis.

Yes Anij surely you may be right, however I thought that maybe all this could be related. So I thought that maybe a member of this forum could know whether profound deafness at such an early age could be due to neurofibrosis...

I have posted elsewhere about my son's symptoms (profoundly deaf, a little late in his gross motor skills due to bad balance, skin rash). We have done dozens of tests which gave normal results (brain MRI, ear MRI and CI, eyes checked, ultrasound at tummy, blood tests, DNA tests, two skin...

Kparocha, do you happen to know any sites from which I could order nursery books for signing babies?

We use both talking and signing. The problem is that today, during our visit to the paediatrician for vaccination, he told me to visit neurologists AGAIN since my boy's symptoms (deafness, skin rash for which we have no diagnosis and mild hypotonia of the trunk which caused delays to gross motor...