Blind and Visually Impaired Community
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Update on 8 year old daughter with possible RP (self.Blind)
submitted by Bunky05
I posted on here about 2 months ago about my 8 year old daughter, who had just been diagnosed with retinal dystrophy. You can click $1 for the post.
We finally went and had her tested and we found out that she has Stargardt Disease. After being at the specialist, at Wake Forest Baptist Health here in NC, for nearly four hours we left feeling a bit better. Don't get me wrong Stargardt's is not an easy ride either, but I am happy it is not RP. My mom also has Stargardt Disease and has retained much of her vision, except for the last couple of years and she is almost 50.
The specialist at WFB said it appears she has had it for quite some time and showed me pictures of her retina and it was covered in all of these white dots, he called them fatty deposits. He said he could see old and new fatty deposits.
Our specialist wants us to go to the clinical trials at Duke hospital and gave me their information. I am excited about this and it gives me hope. Even if it doesn't help her, it can help someone else. But as he said as well, she is still young and possibly by the time she is my age there could be treatment, or even a cure.
We also have set up an IEP at school and she now has, and is getting more, devices set up for her classroom and a special instructor for the visually impaired. And her social worker has set her up with several blind-friendly devices in the home. Also I found out that IEP's are federal documents, so that helps. Especially since my husband is considering reenlisting into the army.
Sorry for rambling on. Thank you to all of those that gave advice and took the time to read my post. I truly appreciate you all.
We finally went and had her tested and we found out that she has Stargardt Disease. After being at the specialist, at Wake Forest Baptist Health here in NC, for nearly four hours we left feeling a bit better. Don't get me wrong Stargardt's is not an easy ride either, but I am happy it is not RP. My mom also has Stargardt Disease and has retained much of her vision, except for the last couple of years and she is almost 50.
The specialist at WFB said it appears she has had it for quite some time and showed me pictures of her retina and it was covered in all of these white dots, he called them fatty deposits. He said he could see old and new fatty deposits.
Our specialist wants us to go to the clinical trials at Duke hospital and gave me their information. I am excited about this and it gives me hope. Even if it doesn't help her, it can help someone else. But as he said as well, she is still young and possibly by the time she is my age there could be treatment, or even a cure.
We also have set up an IEP at school and she now has, and is getting more, devices set up for her classroom and a special instructor for the visually impaired. And her social worker has set her up with several blind-friendly devices in the home. Also I found out that IEP's are federal documents, so that helps. Especially since my husband is considering reenlisting into the army.
Sorry for rambling on. Thank you to all of those that gave advice and took the time to read my post. I truly appreciate you all.
KillerLag 13 points 5y ago
Glad that things are working out!
As Stargardt's progresses, she may become more sensitive to bright lights (sometimes even needing sunglasses indoors) and do better in low light environments.
She may also have some issues with colour, as central vision is responsible for our colour vision. Strong contrasts would help to make things a bit easier to locate.
Additionally, she may have trouble reading smaller print later on. Instead of using a pencil or pen, a felt-tip marker on white paper may be easier for her to see.
I think you also mentioned she was getting some cane training before. A few of my clients who have Stargardt's don't use a cane, but others do, so that can be variable. But it's better to learn the skills now, than not have them when she needs them.
As Stargardt's progresses, she may become more sensitive to bright lights (sometimes even needing sunglasses indoors) and do better in low light environments.
She may also have some issues with colour, as central vision is responsible for our colour vision. Strong contrasts would help to make things a bit easier to locate.
Additionally, she may have trouble reading smaller print later on. Instead of using a pencil or pen, a felt-tip marker on white paper may be easier for her to see.
I think you also mentioned she was getting some cane training before. A few of my clients who have Stargardt's don't use a cane, but others do, so that can be variable. But it's better to learn the skills now, than not have them when she needs them.
-shacklebolt- 5 points 5y ago
I'm glad you guys got some answers and have such a solid game plan already. It's definitely not an easy ride, but knowing what you're dealing with can really help.
You sound like you're doing everything right by her. No matter what her vision holds in the future, you have the tools and desire to advocate for the best things for her. Great job, seriously.
https://nopbc.org/ may be a useful contact for you as well, they have a massive organization of parents of blind and VI children.
You sound like you're doing everything right by her. No matter what her vision holds in the future, you have the tools and desire to advocate for the best things for her. Great job, seriously.
https://nopbc.org/ may be a useful contact for you as well, they have a massive organization of parents of blind and VI children.
Bunky05 [OP] 2 points 5y ago
Thank you. Lurking here and the advice I've been given here has helped and will continue to help. 😊
sshkal 4 points 5y ago
Glad you at least have insight as to what is going on. If she is not a candidate for the Duke study, here are several other actively recruiting clinical studies that include children.
https://clinicaltrials.gov/ct2/results?recrs=a&cond=Stargardt+Diseases+1&cntry=US&age=0
https://clinicaltrials.gov/ct2/results?recrs=a&cond=Stargardt+Diseases+1&cntry=US&age=0
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