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Forum -> Children's Health
Need genetic dr recommendation
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amother
Slateblue


 

Post Tue, Jul 21 2015, 2:25 pm
Dr recommended getting child tested for fragile x. The dr he recommended next available appointment is, let's just say I need to buy a new calender before I can figure it out. Anyone have a suggestion?

Must accept medicaid hmo insurance and be in NYC 5 boros.

thx
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amother
Seashell


 

Post Tue, Jul 21 2015, 8:02 pm
I'm assuming you had yourself tested first? I'm a Carrier for fragile-x. Have you tried dr Wendy Chung at Columbia Presbyterian?
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amother
Turquoise


 

Post Tue, Jul 21 2015, 8:05 pm
We used Dr. Krilov. He was highly recommended and we had a great experience with him. I believe he took our Medicaid insurance, but can't remember.
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amother
Slateblue


 

Post Tue, Jul 21 2015, 8:10 pm
did not have myself tested. I did dor yeshorim but I don't think that's what they test for and anyway they don't tell you. Anyway insurance will cover testing for the person with the issue which is not me so why should I pay a ton out of pocket if they can just test the person we want to know about?

Will look into those suggestions. Thanks.
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Rubber Ducky




 
 
    
 

Post Tue, Jul 21 2015, 8:26 pm
amother wrote:
did not have myself tested. I did dor yeshorim but I don't think that's what they test for and anyway they don't tell you. Anyway insurance will cover testing for the person with the issue which is not me so why should I pay a ton out of pocket if they can just test the person we want to know about?

Will look into those suggestions. Thanks.


You would have yourself and your husband tested to find out whether you're at risk for having more kids with Fragile X.
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amother
Seashell


 

Post Tue, Jul 21 2015, 8:41 pm
For a child to be effected with fragile x only one parent needs to be a carrier so I don't believe dor yeshorim tests for it.
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amother
Slateblue


 

Post Tue, Jul 21 2015, 9:26 pm
Rubber ducky I don't know yet if the child has it, that's what I need a genetic doctor for. If they have it then we can consider whether we should get tested, but why bother at this point if the one we are concerned about is the child? If they have it, then we'll find out by testing them, and it will be covered by insurance anyway.
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amother
Smokey


 

Post Tue, Jul 21 2015, 10:00 pm
We used Dr. Karen David from Methodist hospital in Brooklyn.
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FranticFrummie




 
 
    
 

Post Tue, Jul 21 2015, 10:01 pm
My adopted daughter has Fragile X. Feel free to PM me.

She was diagnosed at Seattle Children's Hospital. (I know that doesn't answer your question, sorry.)
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gande




 
 
    
 

Post Wed, Jul 22 2015, 8:22 am
You can contact bonei olam genetics. They will get you into a dr., Usually dr Wendy Chung, and/or do the testing themselves.
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siyata dishmaya




 
 
    
 

Post Mon, Aug 07 2017, 7:36 pm
How about Dr. Elain Zackai at CHOP?
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anonymrs




 
 
    
 

Post Mon, Aug 07 2017, 7:51 pm
Op, if you feel comfortable, can you pm me? Thanks!
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amother
Goldenrod


 

Post Mon, Aug 07 2017, 8:28 pm
Dr Pappas at NYU?
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out-of-towner




 
 
    
 

Post Mon, Aug 07 2017, 8:40 pm
Dr. Bialer in Cohen Children's LIJ (Northwell Health) is amazing. He really went above and beyond for us. When there was one test that insurance would not cover, he thought outside the box and told DH and I to get tested for something else, which would clarify if further testing needed to happen.

Unfortunately, there is a serious lack of doctors of medical genetics here in the US, and so a few month or more wait is normal. Dr. Bialer expedited our appointment because my son's condition was so serious. (And he ended up seeing us in the hospital when because DS was hospitalized before our scheduled appointment. But for another child of ours who needed to be seen, we had to wait around 3-4 months for an appointment (we saw Dr. Fox, also in LIJ, who is also amazing, but I'm not sure if she still works there, if you can get an appointment with her go for it)!

Hatzlacha!
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happyone




 
 
    
 

Post Mon, Aug 07 2017, 9:54 pm
Brynn Webb in Mt sinai is excellent. It's a simple test. If it proves to be negative she's very dedicated to researching diagnosis and further testing .
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amother
Coral


 

Post Tue, Aug 08 2017, 2:42 pm
OP: "did not have myself tested. I did dor yeshorim but I don't think that's what they test for and anyway they don't tell you. Anyway insurance will cover testing for the person with the issue which is not me so why should I pay a ton out of pocket if they can just test the person we want to know about?

Will look into those suggestions. Thanks."

in order to be tested for this specific genetic disease you need to request in through dor yesharim and you pay an additional $75 for it

if you are a mom with children in 'the parsha' you should look into it, have your child tested for it and have the other party do it as well, many are doing it today.....
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siyata dishmaya




 
 
    
 

Post Sun, Aug 13 2017, 10:22 pm
if our test comes out negative, the results dont mean my child doesn't have that disease. did that come up?
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yogabird




 
 
    
 

Post Sun, Aug 13 2017, 10:46 pm
If it's thought or known to be genetic but standard testing comes back negative you can request whole exome sequencing.
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siyata dishmaya




 
 
    
 

Post Sun, Aug 13 2017, 11:09 pm
what is whole exome sequencing? how does it defer from standard testing and did you ever hear of a skin biopsy to determine accurate results?
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amother
Smokey


 

Post Sun, Aug 13 2017, 11:11 pm
We used Dr. Karen David at Methodist hospital in park slope.
Good luck!!
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