As I have said Harrison has also been diagnosed with Retinitis Pigmentosa (RP) and failed his hearing test.The hearing test was repeated with a bone conduction, to bypass any congestion Harrison had in the ear canal. He has what they are currently terming mixed moderate hearing loss. More tests are still needed to determine the extent of this though, and will be done under a light sedation after the BMT has been done.
RP is a genetic eye condition that causes the light-sensitive retina, at the back of the eye, to degenerate slowly and progressively and in some cases causes blindness. This is also to be further reviewed, post transplant.
It is very rare that a baby has such obvious pigmentation problems, but it is estimated that 1 in 3000 people have RP in Australia.
So far there are no indications that RP is caused by ADA deficiency, and so our doctors are researching now to see if this is a possibility.
What does this mean for us? Well a few challenges lie ahead in terms of Harrison's development - but we hope to get involvement from the Royal Blind Society for early intervention so that we can use the best possible methods to get Harrison developing at a reasonably normal rate.
5 comments:
I wish not approve on it. I regard as precise post. Especially the designation attracted me to study the sound story.
Nice post and this mail helped me alot in my college assignement. Thank you seeking your information.
Hi... my son is 18 and has RP. I just want to give you a little info for you to research... alternitive approach... Micro Acupuncture.com I'm not sure if anyone has been trained in your area. Maybe contact Dr. Otte to see if someone has. These areas on the bottom of the soles of the feet and palms stimulate the rods and cones to grow. Inquire about the vitamins, I'm sure he'd figure a way for your sweetie to take them... maybe just mixed in an applesauce... my son and hubby, (has AMD) are on them... from Progressive Labs.com, here in the states. Many smiles and prayers from Florida :) MJ
That is some information related to test & retinitis pigmentosa treatment. Though doctors are still trying to figure that out which is according to the following article, there are still some effective minor treatments available.
Post a Comment