Genetic Testing

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Veteran Member

Date Joined Mar 2009
Total Posts : 1158
   Posted 6/22/2009 8:06 AM (GMT -6)   
I know insurances don't want to pay for genetic testing.  Which I don't understand that thinking.  If you find something before it gets bad you can possibly slow its progression.
My question is, Do any of you know how much a genetic marker test is? 
My daughter has been searching this since my 15 yr old failed his football physical last week with high amounts of protien in his urine.  I need to get him tested for PKD.  This disease is a 50% chance of passing onto your children.  We want to test all three of them but CJ is going to be the first with this test. 
CJ has to deal with battles left and right.  Also last week he failed his driving permit eye test.  He is also blind in one eye.  But his good eye has adjusted so well to cover for the other eye that he is one of the best players on his football and baseball teams.  He plays for two teams of each all year long.  Hes gone 6 days a week doing practices for all of them.  Regarding the eye he has to see Dr Wang of the Wang institute on Friday to get a signed approval that his eyes are still fine to drive.  With one eye he can see everything but depth perception. If he can't get that signed we have to opt for surgery.
Now he failed his test.  He has to drink a gallon of water a day for two weeks then go back in to be tested.  If the protein is still there he has to go to my Nepherologist.  Scaring me big-time!!!!!  It would kill me if one of them had to feel this kind of pain in there life......
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Veteran Member

Date Joined Nov 2007
Total Posts : 6795
   Posted 6/22/2009 10:33 AM (GMT -6)   
I wish I could help but I have no clue. Have you googled genetic testing? Of course I would be careful about getting a reputable company. Maybe one of your doctors would at least be able to give you some contacts.

Hopefully someone else here will know more.


Veteran Member

Date Joined Apr 2009
Total Posts : 536
   Posted 6/22/2009 10:50 AM (GMT -6)   
Laurie, I am so sorry that you and your son are going through this. Hopefully when you go back in 2 weeks, there will not be protein in his urine. It seems like a gallon of water is alot to drink in a day, but if that is what the doctor said, then I guess he knows what he is talking about. I will be keeping you and your son in my prayers. I know it heartbreaking for you. You know we all care about you and will be here to support you all the way.

Regular Member

Date Joined Jun 2009
Total Posts : 52
   Posted 6/22/2009 10:51 AM (GMT -6)   
first of im so sorry for all this happening... but i do not know a lot about it but there are three websites i know of: which is the national society of genetic counselers, which has links on there page to find a genetic counseler, which could do the tests.... looks lik this site would be ur best bet, and give u some good info!
You could also try the national cancer institue, im not sure if that would help ur specific case, but it might be worth a try?
Or also the surgeon general's site, again not sure how much help but worth a try!

Hope some of this is helpful... and i hope ur son gets all staightened out, and he and all ur kids have no problems ever! i know, sounds cliched and waaayyyy optimistic, but hey! i know ur worried, so ill be positive and optimistic for u! haha- i know how hard it is to be when its you or someone close to you! anyway best of luck!
"In God's hands, in God's time."
"The scourge of life, and death's extreme disgrace, the smoke of hell, that monster called Pain."

Mrs. Dani
Veteran Member

Date Joined Jun 2009
Total Posts : 2787
   Posted 6/22/2009 11:44 AM (GMT -6)   
     Dear Laurie,
    I will try to look up the cost of genetic testing, but for one specific test a friend needed was not quite 5 K.  When it comes to your son being blind in one eye. I too am blind in one eye, for me it is called Congential Cataract.  I have been blind my whole life, with no depth perception. Since that eye has never worked it has nerve damage.. No like "damage" just they never grew.  I have a synthetic lense put in my right eye at 21yrs (when I could finally afford it) and now, my eye is retianing proteins of some kind got those zapped out few weeks ago pressure was intense rebuilding again... and here I go getting offf track. In any case, with glasses on, I am approved to drive. BUT if I get pulled over without my glasses it is an automatic ticket. 750.00 *sigh* ill never leave my glasses off to "look" cool again.  when they are doing the "three mirror test" even partial shadows on the farthest mirror should be good enough to allow divers license. If not, start picking fights till you find the head honcho. Get with glasses restriction. He certianly falls in to "drive with restriction" group.
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood

Veteran Member

Date Joined Mar 2008
Total Posts : 3089
   Posted 6/22/2009 10:39 PM (GMT -6)   
Hi Laurie,

I'm sorry to hear that your son is going through this. I can't imagine how scared you must be that you unknowingly passed your child on a disease that could mean that he might possibly be stricken with the same pain that plagues you! I wish I could help answer your question, but I have no idea, sorry! My best suggestion would be to call the hospital & ask. I hope everything turns out okay!


Veteran Member

Date Joined Mar 2009
Total Posts : 1158
   Posted 6/24/2009 3:17 PM (GMT -6)   
We decided to have them both (son and daughter) get CT scans. The PCP is looking into loops holes to get them done and be covered by the insurance. It won't tell us if they will get it but it will show if cysts are starting to form.

Thank you all for your support hes at the drs now getting his urine checked hopefully he will be home in 30 minutes and say its clear....

39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Stella Marie
Veteran Member

Date Joined May 2005
Total Posts : 601
   Posted 6/25/2009 3:28 AM (GMT -6)   
I have an autosomal dominate genetic disease. There are many questions and concerns about genetic testing. If you already have a disease, no harm will come when genetic testing is used to confirm an ALREADY documented illness. When I went through genetic testing and counseling - the big question is do you want a paper trial in your children's medical history confirming that may get ill some time in the future Once something is in
your permanent medical records stating that you will develop a serious medical condition in the run the risk of being denied medical coverage, life insurance and even employment opportunities. Many genetics specialists recommend you not get certain
testing done through your insurance, but rather self pay. When you self pay t he result do not go into your permanent file. This is a touchy subject. Another thing to consider is do you want you children to "sit around" waiting to come down with this disease. Some people will let life pass over them if they are waiting for the "big ONE.



Stella Marie

Co-Forum Moderator for Chronic Pain

Rare neurodegenerative disease called “Multiple System Atrophy”. a very rare neurodegenrative disease ..i.e. brain rot.  Mobility issues,, O2 , intrathecal pump, neurostimulator, neuropathic pain,  spasticity, central apnea, oesteoarthritis, colitis...etc..etc.


Veteran Member

Date Joined Feb 2009
Total Posts : 999
   Posted 6/25/2009 3:44 AM (GMT -6)   
Laurie, It is good that your doctor is trying to get your insurance to help cover the costs. From my experience, it can range from a couple hundred dollars to several thousand depending on the complexity of the tests and how many individuals are being tested. Other information that I have found in the past about genetic testing, it can take weeks to get the results. Let us know how your son's test went. Keeping you in my prayers.
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