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Replying to Topic: Chizuk needed
Created On 2/17/05 8:04 PM by g


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g
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2/17/05 8:04 PM
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My son has a neurological disorder, which is most likely caused by a genetic syndrome. However, the exact syndrome has not yet been identified. This puts us into a bind in terms of future children, because while he's been tested for just about everything that can be tested for, it's all come back negative; yet that doesn't rule out the possibility that another child may be born with the same condition. Obviously, we are in close contact with both rabbonim and specialists. In the interim, I really could use some chizuk with regard to my situation. B"h it's not that we cannot physically have children, but that's what it feels like, because of all these unknowns.
 
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bmr
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2/17/05 8:32 PM
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There's a lot of chizuk out there to be shared. The best chizuk is often speaking to people in similar situations - just having someone who understands and has been there...there are support groups, individuals...There's chizuk on tape, in writing...
Are you in an area where you can be in touch with a specific individual or organization? NY area or not...there are people to connect to. Obviously, chizuk can be shared online here, too, but sometimes on the phone or in person can offer so much more. If you'd like to share a bit more about your locale, we can go from there.
 
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g
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2/20/05 11:05 AM
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Yes, I do live in the NY area. In terms of tapes, that sounds like a viable idea-- any suggestions??? I do speak to a friend who is in a similar situation, and it helps a lot. But at times, that strong feeling is so overwhelming, that any additional resources would be really wonderful.
Thank you,
g.
 
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hershel
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2/21/05 12:46 PM
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I M working in a genetic laboratory and the chairman of the dept. has helped for 2 families that experienced a similar problem to yours if you need more info contact me dcompy@yahoo.com I also live in NY in the Brooklyn area. (you don’t have to identify your self )
 
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bmr
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2/21/05 9:09 PM
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You can contact me at bmr@addressisp.com if you'd like and we'll come up with other contacts - groups, individuals, etc. and maybe some tapes...
Kol tuv, meanwhile.
 
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YOUNGLDY
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2/21/06 9:52 PM
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HI, SORRY TO HEAR ABOUT YOUR SON. MAYBE IF U SHARE WHAT HE HAS, MAYBE SOMEONE COULD GIVE YOU SOME ADVICE. SUCH AS DR. TO SEE. OR ABOUT MEDS.
TRY WE MOVE SUPPORT GROUP. THEY ARE VERY HELPFUL. THE DIFFERENCE- HERE YOU ARE TALKING TO A YID, THERE- . GOOD LUCK.
 
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rina miriam
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2/22/06 8:22 AM
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Hi! We're in the same diagnosisless boat, also my oldest.
The difference is that I was pregnant again b\f I knew her condition.
And THEN I got pregenant again while was on BC.

I admit his pregnancy was nerve racking,but, having decided to stick with it,
I had to remind myself that Hashem DOSEN'T give you what you can't handle. (ok maybe you need more help)

We've had many discussions on the topic in the support group in my daughters school.

If you want to be in touch I'll give you my E-mail address

Chazack Ve'Amatz!
 
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in the dark
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2/23/06 3:14 PM
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Did anybody use Dr Pappas in NYU? I'm looking for a good genetic dr. for my long awaited newborn. Thank you.
 
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hb
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2/23/06 4:15 PM
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Dr. Wendy Chung in Columbia Pres. Is really great. If you need someone to follow through pregnancy, Dr. Steven Brown is really good. He's in Columbia as well.
Is there a specific reason you want a doc in NYU?
 
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in the dark
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2/24/06 12:14 AM
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no. Would go to Columbia. I have HIP HMO, would Chung accept it? Thanks.
 
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hb
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2/24/06 7:43 AM
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Dr. Wendy Chung's phone number is 212-305-5040. She works together with Dr. Yaboa.
If you have any further questions please feel free to PM me.
Good luck.
 
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g
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3/2/06 8:56 PM
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Hi,
I haven't posted here in a while. We have also consulted w/ Dr. Chung. Excellent. She did a lot of diff. tests, nothing conclusive. B"H our son is doing well, b"H progressing. -Not to say s/t I don't hit "lows."
-g
 
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in the dark
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3/5/06 9:43 PM
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Thanks. I'll let you know how everything's going. I feel like I need a marriage/medical counsler to speak to, of course jewish, do you know anybody in the feild? Who guided you when you felt "down-depressed"? Thanks again for taking the time to post.
 
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mommy
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3/17/06 10:49 AM
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Rina Miriam, I am in the same situation as you are and would like to be in touch. My email address is fs2426@aol.com


Edited: 3/17/06 at 10:50 AM by mommy
 
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Whyme
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4/2/06 2:21 PM
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I've been to Dr. Poppas in NYU medical cneter. He's a good doctor, caring and tells you exactly whats going on.
 
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in the dark
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4/3/06 1:04 AM
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Hey! Thanks Whyme, I totally agree with you about Dr Pappas. Our appt. went by fine. I was satisfied... Still waiting for some blood results. Would you mind sharing your experience? Like-how many kids do you have? Are all/some genetically affected? I really need someone to talk to.....
 
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in the dark
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4/4/06 12:57 AM
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Sorry Whyme, I didn 't know your situation.
 
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