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• Confused and need advice
• Posted: 2008-01-11 21:54:55 By JESSIKA Y
• Hello all! My son was diagnosed w/ Achromatopsia when he was 10 months old after an ERG, we were warned it might not be accurate as he fell asleep. At 3 he had another ERG- under anesthesia- and the diagnosis changed to Cone-Rod Dystrophy. His vision has been assessed as well as can be in a toddler. The glasses are helping. We just moved again and unfortunately have to start this whole process over. He is going to be starting school next year, so this grows more and more important. We don't have faith that either of the diagnosis are correct as the symptoms don't seem to fit, and I recently found out you should be awake for an accurate ERG! What tests should we ask for? We are seeing his new ped for a consult and referrals to (hopefully) a retinal specialist. I am hoping some experts here can help me to advocate for my son. Thanks in advance.

• CRD...
• Posted: 2008-10-06 00:28:45 By S B
• Hi. My son (5yo) has also just been diagnosed with CRD. Unfortunately, CRD is a bit of a 'blanket' diagnosis - meaning that it's cause can be any of a number of different problems... sadly, most genetic.
  Try this link for an explanation... http://www.ssc.education.ed.ac.uk/resources/vi&multi/eyeconds/RcDyst.html
  
  From my understanding of it, an accurate diagnosis is really only possible with gene testing, which is available from here: https://www.carverlab.org/requesting-genetic-test
  or from here: http://www.asperophthalmics.com/ABCRgenetest.htm - which is located in Estonia!
  
  I think the Harvard website had some links to gene testing labs also.
  
  You could also try the following that I have found - it seems to be helping my son!
  
  This is a posting regarding something I seem to have stumbled upon - natural algae named 'Dunaliella salina' and 'Dunaliella bardawil'.
  
  The reason I'm posting, is that my 5yo son was recently diagnosed with rod/cone dystrophy, causing poor night vision, loss of central vision, and very poor colour differentiation, with the problems noticeably worsening over the past few months.
  
  I immediately went into a bit of a frenzy, looking for some sort of cure, and during my search for any kind of treatment (gene therapy appears to be the best hope), I discovered research on Dunaliella bardawil, and then on Dunaliella salina, which showed these forms of algae have very high naturally occurring levels of beta-carotene, including a wide range of cis- and trans- retinal/retinol compounds, as well as the carotenoids lutein and zeaxanthin, and Omega-3 fatty acids - all of which are of benefit to the eye.
  
  After discussion with the retinal specialist who diagnosed my son, I obtained some 'Algotene', produced by ICL Health in Australia (http://www.interclinical.com.au/products.php), and started him on a course of one capsule (500mg) morning and evening (the recommended dose).
  
  NOTE: Algotene was chosen as it was available directly within NZ (where I am). No other reason.
  
  After only a week, I have observed quite a large improvement. He now looks AT me (where he had lost a lot of his central vision, and had been turning his head to one side to be able to see via peripheral vision), and he was playing with his Thomas train set, and just building it - picking up and putting down pieces with no apparent problems - where over the past few months, he had been building it by touch, because he couldn't see it! I have also noticed that his colour differentiation hasn't really improved much yet - mainly night vision and central vision so far, and neither are perfect - but ARE better!
  
  When asked if his eyes are working better, he is emphatic with a "Yes!". 'How?' "In all ways!"
  
  He's also enthusiastic about taking the capsules - even though they taste horrible - which from a 5yo is a pretty good indicator that HE thinks they're helping!
  
  I don't claim that he's cured - but it looks like the slowdown of his deterioration that I had hoped for has not only happened, but his condition is also definitely improving.
  
  It seems that if this stuff is going to have an effect, it shows within the first two weeks, as the Carotene levels in the body rise. We're not at two weeks yet though, and there's some effects...
  
  NOTE: If you try this - make sure it DOES NOT have Vitamin E in it (as some brands available have) - this may cause more problems than cures! (Something I spotted in one of the papers).
  
  I'll attach some of the main links that I have found (and based some of my conclusions on):
  
  http://www.pnas.org/content/97/15/8623.full
  http://www.patentstorm.us/patents/6589989/description.html
  http://170.107.206.70/drug_info/nmdrugprofiles/nutsupdrugs/bet_0032.shtml
  http://journals.cambridge.org/download.php?file=%2FBJN%2FBJN59_03%2FS0007114588000558a.pdf&code=dcfa8911eb96269f3e3ad43a422129d3
  http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1220019
  http://www3.interscience.wiley.com/cgi-bin/fulltext/119181348/HTMLSTART
  
  And these are some brochures and web sales links...
  
  http://www.millennium-health.com/images/Dunaliella-Gold-Brochure.pdf
  http://www.interclinical.com.au/products.php
  
  This link also has more links to reference work...
  http://www.hankintatukku.com/V-betamax.html
  
  http://www.herbalremedies.com/40132.html
  http://www.thehealthierlife.co.uk/natural-health-articles/cancer/dunaliella-salina-algae-anti-cancer-properties-00119.html
  
  
  http://www.health-store.co.uk/acatalog/Oceanic_Beta-Carotene_by_Solgar_-_7mg__180_softgels.html
  https://www.yourhealthfoodstore.co.uk/details.php/p506_natures_aid_natural_beta_carotene.html
  https://www.yourhealthfoodstore.co.uk/details.php/p3584_natures_plus_natural_beta_carotene.html
  
  As I haven't tried any of the above (with the exception of the 'Algotene'), I cannot recommend any of them. Just stuck the links in for your aid...
  
  Errm - again, the main reason I chose Algotene - was that it was the only Dunaliella product that I could find available from within NZ (home). At least it is pure Dunaliella salina!
  
  Good luck with this!
  

• broken link...
• Posted: 2008-10-08 08:17:21 By S B
• The 'Journals.cambridge.' link is broken - please use the following:
  A. Ben-Amotz, S. Mokady and M. Avron (1988). The ß-carotene-rich alga Dunaliella bardawil as a source of retinol in a rat diet. British Journal of Nutrition, 59 , pp 443-449
  doi:10.1079/BJN19880053: http://journals.cambridge.org/action/displayAbstract?aid=861048
  This is the link to the relevant journal, where a link to the full pdf of the article can be found:
  http://journals.cambridge.org/action/displayIssue?jid=BJN&volumeId=59&issueId=03&iid=860940#