This is not a joke......

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Offline Christine Mary

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  • Mother of Lauryn, who has Thal Major
This is not a joke......
« on: September 11, 2006, 05:13:45 PM »
hi everyone!
 
i promise im not kidding when i say that Lauryns dr called AGAIN  :mad to tell me that they still havent gotten the results! they said this time they DID get enuff blood, but the hospital thats testing it has yet to send them in. :wah
when i asked the nurse, whats taking so long, she said..... the lab doesnt know, that we know, that you and your husband carry the trait. so they are making sure the cells line up and they are trying to sort things out, to see where things are coming from. does this mean inadvertently that she has thal major, and they just want to make sure? b/c my theory is if she DIDNT have it, then they would know immidiatley.right? (my husband says not to jump to conclusions). easy for him to say. :huh
does that make any sense to you? if so can you please please explain it to me.  :dunno
i also found out they are doing the hb electrophoresis, NOT the dna. does the electrophoresis take this long? is it that hard of a test that it takes 1 week to get the results?  :banghead :hissyfit :now :quiver :sadno :tantrum :wtf :madno :waiting
i am so aggrevated, and i feel this is emotional torture! 3 weeks today we've been waiting, and im fed up. i just wish drs knew how delicate peoples feelings are. :wah :wah :wtf :nope :now
 :pissedoff :pissedoff :pissedoff :pissedoff :pissedoff :pissedoff :pissedoff :pissedoff :pissedoff :pissedoff
can anyone shed some light on this nightmare, so i can STOPPPP ranting???? :mouthshut

 :heartred
christine

Lauryn's Mom

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Offline KHALIFA

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Re: This is not a joke......
« Reply #1 on: September 12, 2006, 12:13:04 AM »
Dear am so sorry for your problem with this kind of careless Drs and such this hospital ,,,i have a salution for your problem but may be it will cost you much
i sugest you and your husbened take any airplane heading to italy and go to prof.leugaralli who is controling the hospital for thalassimia it's better for you and your child... for me i finish bone marrow transplant and go back to kuwait last june 3rd and Dr.paola told me i want to see your boy next dicember but i know when i go back home they are not going to treat him well so i dicide to go back to italy 05/august with my son for one week i came back to kuwait 12/august  i check him every thing i satesfy also i relax my brain from tooooooooo much thinking ...that my edvise for you .... 
                             GOD HELP YOU
RED_PILOT

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Offline Andy Battaglia

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  • Will thal rule you or will you rule thal?
Re: This is not a joke......
« Reply #2 on: September 12, 2006, 05:17:27 PM »
Hi Chrissy,

The test shouldn't take that long. It may just be the lab is slow getting to it. I'm beginning to think that maybe you should find another doctor and another lab. Electrophoresis will give some indication but again, it will not definitely confirm thal at this age. This is why normally these tests are done between 3 and 6 months old, to see what changes have taken place. If the HbF is still high at 6 months, then thal is indicated. Before that it is mostly a wait and see approach.

I know it's almost impossible, but please try to get your mind off this for awhile. Don't let it distract you from that adorable baby.  :wink
Andy

All we are saying is give thals a chance.

Re: This is not a joke......
« Reply #3 on: September 13, 2006, 04:47:29 AM »
As Andy said, to do hemoglobin electrophoresis it will take matter of few hours, but at this age it will be inconclusive , I wonder whether they are planning to do a DNA test to diagnose at this age, in that case it might take some time or they might have to refer to some other lab who has facilities and know how.
I hope and wish this child will be normal, parents been minor sill there is 25% chance that child can be normal. Good Luck

 

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