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• Update on 11yr old 'probably RP'
• Posted: 2008-01-17 06:55:11 By wendy f
• Hi,
  Well its been a hard few weeks here. The eye doc rang me on 17th Dec to say my daughter has all the signs of RP without the Pigmentation. Darren gave advice. We had to then 'sit it out' over the Xmas period and wait for everyone to start back to work...
  In the meantime I discovered my daughter is having serious problems getting around in the dark, in busy places, in using stairs etc, and has what I would describe as pretty severe tunnel vision.
  So, this week we've been to the VI assessment clinic. Present was our Peadiatrician, an Optomatrist and two VI teachers.
  They told me my daughter probably has Usher Syndrome (I'm not shocked, I had my suspicions)They said her ERG 'showed extensive photoreceptor abnormality' Her visual acuity however is very good at 6/6 both eyes. She has no clour blindness and can read at font N12
  They offered 'sightd guide' training but that was about it. They didn't know anything about Usher really and said they haven't had one before!
  I remembered when I got home to ask what degree of loss she has with the tunnel vision and I'm waiting for them to call me with that info.
  Educationally we have a school with a VI unit but no HI experience and also a school with a HI unit but no VI experience! My daughter prefers the light in the school with the VI unit, she says the HI unit school is too dark.
  They are keen for her to go to the HI unit school but I'm concerned about her safety as mobility is a problem already for her. Also the school has alot of 'pillars' on the day we visited she walked into two!!
  She was referred to Addenbrookes to a Miss Allen, I rang to chase the appointment and was told Miss Allen says its so rare that she is referring us straight to the geneticist and won't see my child herself! I kicked up a fuss and now she has agreed to see us next week, 23rd. They will do visual field then eye drops for Miss Allen to look in her eyes.
  Any tips appreciated. I'm not impressed with how blaze they are about it. I don't feel any of them know enough about the effect Usher has on a person life...
  Thanks Wendy in the UK

• Re: Update on 11yr old 'probably RP'
• Posted: 2008-01-17 12:53:51 By Darran Z
• Wendy,
  
  What you are experiencing is typical, even in the States. Unless the practitioner is familair with RP, they likely would do the same. Even in the educational situation.
  
  For me, I had a VI Teacher with little HI experience and vice versa. So the educational system will likely have to utilze a little of both. Here in the States, they have what is called Deaf-Blind Projcets which often ensure that educational services are adaquate for those with VI and HI. Most of the time, those with User are often hooked with VI teachers. In fact, the services for deaf-blindness are always associated with agencies that service the blind. That is true in Canada too. You may want to contact the RNIB (Royal National Institute for the Blind? I think that is what it's called) and see what they suggest. But likely, you will have the VI teacher address the VI needs and the HI teacher address the HI needs but BOTH will need to work and learn from eachother to offer maximum benefit to your daughter. I don't know the educational laws in the UK so I can't offer much advice in this area.
  
  Did you contact Dr. Bill Kimberling? I would start with him and see if he knows someone in the UK. He's got alot of European contacts.
  
  Darran

• Re: Re: Update on 11yr old 'probably RP'
• Posted: 2008-01-17 13:10:32 By wendy f
• Thanks Darran,
  
  They are offering HI teaching assistant support in class, teacher of the deaf input weekly and the a visit from VI service say once a term, there are 4 terms a year.
  I have contacted Sense a deafbling charity and the lady who will meet with me tomorrow is a Multi Sensory trained teacher so I'm hoping she'll point them in the right direction. Think I'll have a fight on my hands though as both HI and VI service here are undermanned and under funded. Both have no head of service and both have their teachers about to retire this summer. The Local education authority are pulling money OUT of HI/VI service not putting it in...Bad timing for us, huh?!
  Cynthi, LauraD and Katie on the parents of RP kids site have been fab today, a few tips from the re mobility and orientation will be of use.
  I'm afraid I haven't emailed Dr Kimbling just yet. I was too emotional last week and earlier this week. I had to tell the family. The older kids are devasted. They hadnt even contemplated that their little sis could end up with Usher. They think I'm obsessed with getting info and worry too much.. Ha!
  Today I'm more organised and methodical. I'm ready to start pushing for what we need. I'll email him this evening.
  Tomorrow I need to focus on the education meeting.
  Shannon by the way is doing brilliantly. She got a little scared yest when they said Usher but she's ok, she's got a few book about it and is learning in her own time. She's lovely.
  Thanks again Darran,
  Wendy

• Re: Re: Re: Update on 11yr old 'probably RP'
• Posted: 2008-01-17 13:18:52 By Darran Z
• I emailed Bill to ask if he knew someone. I'll get a response in the next 24 yrs or so. He's pretty good at responding to my inquiries. If he doesn't, I'll ask his secretary who does respond immediately to me! But I know Bill has been away as a Visiting Professor as some other universities here in the States and working with other researchers. He travles to Europe about this time of year as well so he may be out of the office.
  
  But let your daughter learn at her pace. I was diagnosed when I was 6 so I certainly remember all this. My parents never shielded this from me and we learned as we go. Now, I'm profoundly deaf and going through the testing for a Cochlear Implant.
  
  If it makes you feel better, I am married, graduated from college (hold a Bachelor's degree in Psychology, with aims to finish my PhD once I learn Braille and go back to Graduate school), and I raise my three beautiful children (ages 9, 6 and 16 months). Life is great once one has the proper training and tools to be independant. That is the key.
  
  Darran

• Re: Re: Re: Re: Update on 11yr old 'probably RP'
• Posted: 2008-01-17 14:37:10 By wendy f
• OW thanks for that Darran, you are amazing!
  I was actually drafting an e,ail to Dr Bill when you posted that, at the same time I took a call from an teaching assistnat I met the other day, she's multi sensory trained and ex-deafblind uk. She was pleased to hear your advice to me and I read out to her youe post.
  It is so encouraging to hear what a full life usher people live - oh don't mean to sound patronising, do hope that doesn't, its just that I want Sahnnon to have independence and be comfortable with usher, not afraid of it.
  The girl I was chatting to said she works with some usher adults that would love to meet me and Shannon. I'm delighted. I said we'll do it sometime in the next week or so after i've got more info re the degree of visual field loss.
  There is a independant living centre very near where we live.
  I'd better go now and get this child ready for bed, we need our cuddle and chat time!
  Thanks again,
  you are a real star!
  Wendy

• Re: Re: Re: Re: Re: Update on 11yr old 'probably RP'
• Posted: 2008-01-17 14:47:16 By Darran Z
• There are many Usher adults who live happy and productive lives.
  
  The Independant Living Center sounds great. But just a word of caution, but you'd likely pick up on this since you did with the VI/HI teachers: Unless they are familiar with both sensory impairments, you'd have to address them separately as well. For example, a Social Worker who works with Blind students will not understand the deafness aspsect because blind peopel rely so much on their hearing. And vice versa for the deaf, since they rely upon their sight. You may, if you can, wish to consult with the Helen Keller National Center in NYC (www.hknc.org). I do not know if they have an office in the UK but I do they have one in Canada. They address both aspects of deafness and blindness and train for independance. I can inquire of my HKNC rep to see how it works for international students. But in the States, each State has a Vocational Rehabilitation (VR) agency. Often VR will refer their deaf-blind clients to HKNC and pay for the costs for the training there. So that's an option.
  
  Darran

• Re: Re: Re: Re: Re: Re: Update on 11yr old 'probably RP'
• Posted: 2008-01-17 14:57:49 By wendy f
• Yes, yes, I know what you mean, I'm also expecting to come up against exactly that!
  I'll look at the Helen Kellar Centre tomorrow.
  Thanks again W