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#1
06-10-2008, 09:36 AM
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Imerslund-Gräsbeck syndrome (anyone else had their child diagnosed with this?)
hi
Carmen has just recently been diagnosed with Imerslund-Gräsbeck syndrome. It's a geneticall inherited condition that means she can't absorb vitaminb12 and will get injections of this for the rest of her life. I am just extremely relieved that it is so treatable and she is now running around again like her old self. It has been a worrying time and now I am counting my blessings. Apparently it is a very rare condition - but I just wanted to ask if anyone else had gotten this diagnosis for their child? I am wondering if it is more prevalent in Guatemala? and just trying to educate myself in general many thanks in advance for any responses! Mary-Kate 
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Guatemala Adoption Information
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#2
06-10-2008, 09:48 AM
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No ideas but loads of HUGS I was wondering where you were. I hadn't seen you on the boards for some time. An injection a month isn't too bad in the grand scheme of things if Carmen is healthy otherwise. Loads of HUGS again. Bernie
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Brian Born 22/8/07 HOME to Ireland 30th JULY 08 
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#3
06-10-2008, 10:12 AM
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I've never heard of this and looked it up. Seems quite rare so I 'm so glad your Drs were able to diagnose it. What kind of symptoms did Carmen have? Was it an easy diagnosis or did she have to go through lots of testing - poor baby. Curious to see if it's genetically prevalent in Guatemalans.
So nice to see you post MK, besides little miss Carmen's diagnosis, I hope all else is going well for you both.
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Jan Mom to Bio Son and Guatemalan Daughter DOB 11/24/04 Referral 1/20/05 POA 1/28/05 DNA taken 1/31/05 DNA match 2/9/05 1st visit 2/20 - 2/23/05 FC 2/23 - 3/30/05 Discovered that Embassy misplaced file 3/10/05 2nd visit 4/1/05 - 4/4/05 Recreated file to Embassy 4/12/05 Pre-Approval 5/6/05 In PGN 5/9/05 Out PGN 5/30/05 Pink 6/15/05 Home 6/18/05
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#4
06-10-2008, 10:28 AM
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she didn't really have any symptoms yet - it was a routine bloodwork up after a viral infection - the doc noticed her hemaglobin (?) was low and a few other things & organised a referral to a hospital consultant
they then called me a week or two later and said she needed to come in to hospital - to get a bone marrow test - they were worried it was leukemia - that was a long long few days but such a relief to get the IGS diagnosis Carmen is a delight!!! i have forgotten how to upload pictures  and would so love to - must see if i can figure it out againthanks for the hugs bernie - thinkin of you in pgn limbo/hell, everyday Mary-Kate
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#5
06-10-2008, 10:48 AM
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pictures
ok - hope this works
both pics were taken in the past month and just added an avatar! Mary-Kate shinyball.jpg CarmenMay08.jpg Last edited by mksilvermoon : 06-10-2008 at 10:53 AM.
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#6
06-10-2008, 10:50 AM
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No info on the syndrome but glad Carmen is feeling better! She is sooo adorable!!!
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Kathy 10/18/05 Referral received - Baby Boy (DOB 9/24/05) 4/8/06 Home Forever!!!! 2/5/06 Readoption Complete http://john-carlos.blogspot.com/ 
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#7
06-10-2008, 11:02 AM
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She is just gorgeous! Hope she is feeling 100 percent very soon!
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Debbie - Mom to 3 Including 2 from Guatemala Community Moderator
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#8
06-10-2008, 11:03 AM
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oh, is she ever beautiful!! hope she is feeling better soon!!
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Born 10/19/07 Home Forever - 10/31 
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#9
06-10-2008, 11:55 AM
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I'm glad for your manageable diagnosis.
 I love the pictures, and they remind me quite a bit of my own dd.
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Stefanie 9/06/06 I-171H 9/08/06 Referral of sweet baby girl born 8/01/06 9/20/06 POA in Guatemala 10/02/06 In Family Court 11/15/06 DNA authorization 11/23/06 DNA taken and SWI 12/04/06 DNA match 12/14/06 Out of Family Court 12/27/06 Pre-approval 1/08/07 In PGN 1/18-22/07 Visit trip 2/14/07 KO (so, so sad) 2/15/07 Resubmit ("missing" document not missing) 4/13/07 OUT  4/30/07 PINK  5/14/07 Embassy appointment  5/17/07 Fly HOME! (arrival 5/18/07)
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#10
06-10-2008, 03:03 PM
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So sorry you're dealing with this Mary-Kate! Thank goodness it's treatable! Carmen is beautiful and looks so happy!
Glad to see you back! Hope to hear from you more often! Jeanne
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Jeanne  11/05 decided to switch countries from Ukraine to Guatemala 11/23/05 accepted referral for beautiful baby girl born Nov. 9th. 12/15/05 dossier to Guatemala 1/15/06 DNA matched and we are in Family Court 1/25/06 embassy receives DNA 2/23-2/27 beautiful visit trip! 3/10/06 contacted senator's office about preapproval. 4/21/06 got PREAPPROVAL! Yippeeeee! 8/18/06 FINALLY IN PGN 8/25/06 ooops....our mistake! NOT in PGN!  9/4/06 Okay! NOW we're IN PGN! 12/19/06 OUT OUT OUT of PGN! Thank you SOOOOOO MUCH!  1/10/07 new birth certificate issued 1/17/07 PINK!!! Appt is 1/23/07 Thank you God!  Finally home in Kentucky! 1/29/07
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#11
06-10-2008, 03:39 PM
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Carmen gets more beautiful everyday. I haven't heard of that condition before, but I am happy it was caught and is treatable. Thanks for sharing the pics.
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GabeMom dob 4/4/05 It's a BOY!!! referral 4/22/05  I-171H 5/9/05 dossier 5/12/05 DNA done 6/17/05 FC interview 6/16/05 DNA Match!!!! 6/23 99.99! Glorious Visit 6/30-7/5 Out of FC some time before 7/13 Pre-approval 7/27. Officially notified 8/4. 2nd wonderful visit 8/10-8/17 PGN 8/16 (we think!) O-U-T!!! 8/30 BC 9/5 PINK 9/12 Travel 9/17-9/22 Home 9/23 2nd time 7/30/07Christian born 9/7/07Referral 11/22 enter PGN 12/14 PREVIO 2/11 Resubmit 2/27/08 OUT 3/26/08 2nd DNA 4/2/08 DNA arrives at Embassy 4/3/08 Missing Visa 37 4/16/08 PINK 4/25/08 Embassy 4/29/08 HOME
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#12
06-10-2008, 04:43 PM
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What a cutie she is! It's great that you've caught her condition so early. She's got an adorable smile!
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Trish Precious Baby Boy Referral 9/26/06 Home! 6/6/07 Sweet Baby Boy Referral 5/9/07 Home! 3/21/08
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#13
06-10-2008, 05:26 PM
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No information on this but was wondering how old Carmen was when diagnosed?? She is beautiful......could it have been picked up earlier??? How does one get this?
THanks for sharing, Anna
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ANNA Mother to my 2 wonderful happy sons, one from Guatemala and one bio.
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#14
06-10-2008, 06:08 PM
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I have been off for what seems like forever. Glad they have put a Dx on it, blessings to you all. I have a 5yo from Guat. who has been diagnosed with non-alcoholic fatty liver disease with stage one cirosis of the liver. I know the stress these diseases can take on us. Good luck. Nancy
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My Girls and loving them :Monika:Romania 1998 Izabella:Guatemala Home Feb 2004 Esmaylin:Guatemala Home July 2005
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#15
06-10-2008, 06:37 PM
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hi!
Hi Mary-Kate-
I think about you and Carmen often. She is just BEAUTIFUL!! I can't even imagine how scary that uncertain waiting time must have been for you and even though this is not the best news, at least she will be okay (easy for me to say, huh?). I am sorry you are going through this. Stay in touch...! We miss you around here. I still lurk all the time but do not post much. Warm regards, Maureen
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Blessing #1 Home 9/2004 Blessing #2 B 11/5/05 R 1/20/07 DNA auth. 2/12 DNA Taken 5/3 Match 5/10....yahoooo!!!!!!! Into PGN - late May/early June KO 7/5/07 for no PA PA on lucky 7/7/07 Back into PGN 7/11/07 KO 9/11....so sad Back into PGN 10/11 O-U-T 11/1 Embassy Appt 12/3 Home 12/5/07 Blessing #3 B 8/15/06 R 9/1/07 (signed POA in Guatemala) DNA auth. 9/25 Bio mom still missing...its a mess...so sad 1/9/08 Visit me at: http://moonsfamily.blogspot.com/
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