Thank you, I will definitely call and see if we can get a consultation. Maybe she can provide some insight as to what the problem is and if it can be treated.

Once more I want to thank everyone for their thoughts and prayers. This has been almost unbearable and all of you have given me incredible support. While it may be a Yorkie website, I've found wonderful people. I cannot express how much it has helped to be able to vent here and get your ideas and support in return. You are AMAZING people...thank you.

I have been away for a few days & just read up here. I did not see where or if they checked his thyroid, did they check his thyroid ? Still praying for your son here.

Loma Linda is a wonderful medical facility. As an RN I would suggest a couple of things. Write down questions right now. And write down what the doctor says and answers to those questions. It would also be very helpful for you to have a close friend come with you. Someone other than a family member who would be able to listen and remember things you might not be able to. You might be able to record the conversation as well, but I'm not sure you can do that. Sending prayers to you and your son. Not knowing what is wrong is often worse than whatever it is. God Bless

Totally agree. Whenever Andy + I had to go to hospitals, I would record the conversations on his phone, so we could re-play it later. I think our minds are in such turmoil that we forget, sometimes, very important points.

I also took photos of any scans, x-rays etc. from the Specialists computers. It's certainly all allowed 'over here' - they would all twist the screen round, so I could get a better view.

Please don't think, because I'm being a bit quiet lately, that you're not in my very special thoughts. Hugs to you and your son xxx

They did check his thyroid and everything was normal. I know they are planning a new strategy/testing but I'm not sure what tests they will be. They also said they were sending his records out for other opinions.

Harrysmum...you have had plenty to handle in your own life. I've been keeping you and your husband in my prayers also.

Thank you for the advice. We can always ask if we can record the appt...the worst they can say is no. We do have copies of all of his tests so far, including a copy of the MRI on DVD. I'm hoping we can send copies to the Dr. that Yorkimom1 suggested if she is willing to look them over.

I am new to the site as of today but wanted to say that my thoughts and prayers are with you and your family.

prayers for you
 

I am new to the site as of today and I wanted to send you and your family my prayers and hope your son will soon be well.:biewer:



.

I had hoped you all would have had a diagnosis. I am sorry the results didn't come up with something. But so many of our knowledgable people here are giving you much needed information and I Know they have been there for me when I needed help.

I pray that the Doctor in Houston, Loma Linda or any of the specialists who are so interested in getting to the root of what is causing these symptoms. I am so happy the guitar came and hope it brings a smile to your son. Great that the instructor will be there on Saturday. Doing something he really enjoys will do wonders for him.

Hugs to you, your son and family. :love:

The newest info. Is that the specialist says he is 70% sure that my son has one of two degenerative eye diseases that involve the early break down of the optic nerve. This can only be positively diagnosed by DNA since they are caused by a genetic defect in the DNA. There is still a 30% chance that it is some other degenerative neurological disorder, however the specialist doesn't think that it is since all other neurological function tests have been normal. The only way to find out for sure is more tests.

Unfortunately, my son has decided he doesn't want anymore tests. I'm hoping he just needs a break but for the moment, he is refusing to continue. I've decided to let it go for the next few days to give him some time. If he doesn't change his mind, I'll have to figure out a way to change it for him.

Thanks again to everyone. While I am terribly sad that my son is losing his sight, I am grateful that it looks like he will be otherwise healthy. I need to know for certain what is wrong but I think I need to let him digest the info. I'll update when I know more.

I'm so sorry your son will lose his sight. That's about as tough as it gets. I won't pretend your son hasn't been issued a body blow to his life because he has. Everything about how he lives his life will change and his stress, resentment and anger will no doubt be immense for the longest time to come. But a smart young man, and yours is, will begin to adjust to his reality and in time, even grow to accept it in a practical way.

As insensitive as this sounds right now, believe it or not, your son received just about the best news he could have with that sudden onset of bilateral blindness. He's going to live. He's not got a muscle-wasting disease that will rob him of his ability to function nor a brain malignancy that will take his life within the year. That's hugely wonderful! He'll lose his sight, yes, but he can still complete his education, get an important job, marry, walk the dog and provide for and love a family of his own, should he choose to do that. He's still got a life ahead of him and right now, that's something to hold on to and cherish.

Try not to accept this news or deal with it right now - just let the shock keep you as far from reality as it can for the time being. Let your son do the same and work it out however he wants. Make him take his sedatives so he can relax at times and get his rest. Be there for him and get him professional help if he needs it - the young sometimes can't see a way forward at first. But hold onto this - your son has a future and a real life he'll get to live.

Thanks Jeanie, I know your right and deep down, I know my son does too. He's just in shock and angry at the world right now. In time it will get more manageable. He is talking about trying to go back to school in the fall. We have a lot to learn between now and then.

Anger is completely normal and shock is good - it can buffer things. For right now, anger is probably the only thing your son can understand.

I cannot believe he's already making plans! It sounds like he's feeling this awful pain and already trying to figure out how to manage it, beat it. That's one amazing man you have there. I wish he had access to some boxing gloves and a bag this weekend. I'm praying you all find some rest this weekend.

You have an amazing son and a blessing he is thinking of his future. I hope you all can try to relax a bit this weekend. Maybe it's a dumb question...but how does he like his guitar?
I hope he finds it enjoyable.

He actually didn't touch it until Friday...didn't even open it. But last night he opened it and started tuning it to get ready for his lesson today. On Friday his doctor emailed him his most likely diagnosis, which is Leber's hereditary optic neuropathy (LHON). While the members of his medical team feel that this is the actual diagnosis, protocol still says for them to continue the battery of tests they want to run. However, he has the markers for the disease and they have ruled out almost any other possible cause. The extra tests are just a precaution to ensure there are no other underlying disorders. This has only made my son more set against more tests since there is no cure and the doctors are almost certain this is the cause of his blindness. The doctor actually gave my son his cell phone number and told him to call any time.

At least we have a diagnosis, or at least a most likely diagnosis, and it is not life threatening. It is however, life changing for my son and our family. Thank you again to everyone for your support during this time. It's going to be difficult over the next few months but I believe my son will adjust. Now we need to start learning how to get him the help he needs to move forward in life.

Your son refusing more testing now gives him something he hasn't had in some time, CONTROL. Most likely a delay in any testing won't change anything and it will allow your boy to digest the information he has before moving forward or adding any additional information to the mix. One can only handle so much poking and prodding before it wants to run away and hide. I can understand why he needs time to process this before moving forward. Give him a break.

Your son's responses are fairly normal grief responses. Really tough situation.

You might consider:
Is there a school for the blind or sight impaired or a local community organization for the blind? I had a patient who lost his sight as a young person and i got ahold of an faculty member at the local school, who was blind, and hooked them up -- made a lot of difference to my patient to get to hang with a successful and educated sight impaired person.

Also, don't forget he is eligible for a very well professionally trained sight assistant dog. Start applictions as soon as possible as the wait time is fairly significant. His physicians can document his qualifications.

Thinking of you folks!!

Thinking about son today and praying for him. Hope you guys are getting at least some rest this weekend.

:thumbup::thumbup::thumbup:
Let him catch his breath......let him process all the information he has been bombarded with to this point.....he will formulate a plan of attack.....


"Also, don't forget he is eligible for a very well professionally trained sight assistant dog. Start applictions as soon as possible as the wait time is fairly significant. His physicians can document his qualifications."
GREAT idea!!

I am sorry your son will loose his sight & I will be Praying for a smooth transition for him. I was so hoping for a thyroid issue diagnosis as it would have been a fast & easy fix. Not sure exactly where your located but there is a world known school for the blind in Riverside on VanBuren Blvd I believe & it's on the Target side of the 91 FWY if I remember rite & that's where I would start as I'm sure they would be of great help to your son.

OMG, now I'm second guessing myself. It might be a school for the deaf. I used to drive by that school twice a day 5 days a week to & from work. If you ask the Dr at Loma Linda they will deff know.

Thank you, we'll look into it to find out. We will be getting a visit from an aide to help us start making plans. I'm sure we will discuss schools.

I am so sorry that he will lose his vision.

Check out Lighthouse for the Blind, they are a great resource.

Have you seen this? I know it's for northern CA residents, but not sure where you are located and if the Lighthouse for the Blind in your area has anything similar: A Few Spots Still Open in Our Innovative Introduction to Blindness Group at Our Napa Retreat - LightHouse for the Blind and Visually Impaired

Retreat
 

What a wonderful idea!! To get people together who are losing or have lost their sight would be most comforting and useful. And they don't even charge for seniors if you live in that area.
I believe that the son lives in SoCal if they are going to Loma Linda hospital.
If there is not such an org down here, let's hope someone starts one.

I don't see a chapter of Lighthouse in Los Angeles, but they do have the Braille Institute, and they have an events calendar: Braille Institute

Thank you all for the suggestions...I'll talk to my son about them. We are just hanging out this weekend and will meet with the aide tomorrow. I'll also ask the aide about these and any other nearby institutes.

Glad you guys are doing as little as you can and getting your rest this weekend. You certainly need time to unplug any time you can sneak it in.

With you guys in spirit today.

Just wanted to say I am thinking of you all and prayers continued for your son.

dog
 

I am seeking the Lord Jesus for your son and your family. When hope is down we look up. We cannot understand this but somehow we get strength to face life . Rely on us to pray and surround you with love. You will see light through this storm.