DownSyn Forum Forum Index DownSyn Forum
Extra Chromosome... Extra Family
 
shoppingShop   Watched TopicsWatched Topics   FAQFAQ   SearchSearch   MemberlistMemberlist   CalendarCalendar  RegisterRegister 
 ProfileProfile   MapMap   Log in to check your private messagesLog in to check your private messages   Log inLog in 
Forum TourForum Tour 

Please pray we get this figured out


 
Post new topic   Reply to topic   printer-friendly view       DownSyn Forum Forum Index -> Prayer Requests
View previous topic :: View next topic  
Author Message
Annieo
Super Member


NDSC Attendee

Joined: 03 Jan 2003


Last Visit: 27 Sep 2010
Posts: 3980
Location: Minneapolis suburb, MN

PostPosted: July 10 2009, 11:10 PM    Post subject:
Please pray we get this figured out
Reply with quote

Earlier today I typed up a HUGE long post venting about John's GI issues. I decided about halfway through that I wouldn't post it but that the details and history I included would be good to have all written down. My plan was to copy and paste it to a Word document, but then my son logged me off the computer and I lost the whole thing. Ugh! So now I'm here with no detail or history to simply ask for your prayers that we can figure out what's causing John's diarrhea. I feel like the GI doctor we're seeing is on an ego trip. When he offered a very simple explanation that didn't seem to me to fit what we're dealing with, I told him I didn't buy it and now I feel like he's trying to prove me wrong. I am so tired of it all. It's been an ongoing issue for over a year. Poor Leah has been getting regular reports about John's blowouts (the best being an early morning adventure that involved two guinea pigs and took over an hour to clean up). She's also been playing detective with me trying to sort through the evidence and figure out what's going on. I finally made an appointment for next week at the Mayo Clinic. Both John's pediatrician and Leah recommended this months ago but I thought I'd give the local GI clinic another try. Now I'm more frustrated than ever. I've been on the verge of tears all day, which is silly, but the poop has gotten really bad and I'm tired of doctors who are cocky and confident and think I'm stupid.

Thanks! I'll let you know if we learn anything new.

_________________


"There's a release in knowing the truth no matter how anguishing it is. You come finally to the irreducible thing, and there's nothing left to do but pick it up and hold it. Then, at least, you can enter the severe mercy of acceptance." Sue Monk Kidd

"Never doubt that a small group of thoughtful people can make a difference, in fact it is the only thing that ever has." Margaret Meade

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul and Alice

www.caringbridge.org/visit/johnbremer
Back to top
View user's profile Send private message   Visit poster's website
LinMac
Super Member


Joined: 27 Oct 2005


Last Visit: 27 Sep 2010
Posts: 3686
Location: Dublin, Ireland

PostPosted: July 11 2009, 8:55 AM    Post subject:
Reply with quote

Praying you get some answers Ann.
Its so worrying when we don't know what is really going on!
Please keep us updated if you can.

_________________
Linda & John
mom to Hannah Kate (Age 12 ), Robert (Aged 6 - DS)


First day at school
Back to top
View user's profile Send private message  
pookeymom
Super Member


Joined: 13 May 2006


Last Visit: 30 Jul 2010
Posts: 3492
Location: DuBois, PA

PostPosted: July 11 2009, 9:04 AM    Post subject:
Reply with quote

Prayers for John

_________________

Stacy, Mom to Tristin 12, Camille 8, Elijah 6, Caleb and Isaac 4
Back to top
View user's profile Send private message [ Hidden ] Visit poster's website Visit poster's blog Yahoo Messenger MSN Messenger
Courtney
Senior Member


Joined: 07 Aug 2007


Last Visit: 27 Sep 2010
Posts: 665
Location: Middletown, NY

PostPosted: July 11 2009, 9:06 AM    Post subject:
Reply with quote

Prayers. And hugs.

_________________
~Courtney
{Lucy, 3, Ds, AVSD repaired 1/08; Brodie, 1}

Friendship is born at that moment when one person says to another, "What! You too? I thought I was the only one!" -CS Lewis

Back to top
View user's profile Send private message   Visit poster's blog AIM Address
rhonda
Super Member


Joined: 24 Jan 2003


Last Visit: 02 Aug 2010
Posts: 6927
Location: Syracuse, NY

PostPosted: July 11 2009, 9:38 AM    Post subject:
Reply with quote

Praying they are able to give you answers next week at John's appt.

_________________
Rhonda

Taylor 17, Jordan 16, Dylan 7

Back to top
View user's profile Send private message [ Hidden ]
grammy to Aleena
Senior Member


Joined: 30 Sep 2004


Last Visit: 20 Sep 2010
Posts: 828

PostPosted: July 11 2009, 11:48 AM    Post subject:
Reply with quote

We're praying for the cause of the problem to be known, and fixed. So sorrry you have to go through this, Ann.

_________________
Shirley
Back to top
View user's profile Send private message [ Hidden ]
burnsun
Super Member


Joined: 11 Nov 2004


Last Visit: 27 Sep 2010
Posts: 2238
Location: Missouri

PostPosted: July 11 2009, 12:44 PM    Post subject:
Reply with quote

I so ge tthe doctor and thinking I am stupid................ If I hadn't been so adamant with Miranda she would still be my perfect little "potato" in a ball...............no one not one dr thought she was having seizures.....months and months ............drs and specialists................ doing it again with Emerson's heart issues...............

everyone says there is no problem...... but he just slows and almosts gets to a stop .....they start cpr in NICU sooner than we have the alarm set now.............every one says there is nothing wrong..... it will just stop...... I am so tired of this!!!!! And none of this is a foul smelling as poo!!!!!!!!!!!!!!! (I get it about once a day but usually never from the same kid............. so I really do feel for you!

I hope Mayo finds you some answers!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS
Devon Richard(4/13/01) DS & Autism
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03)
Eliza Marisol (5/15/04) DS
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy
Jordan Alexander(3/17/2007)
Emerson James (1/08/2009) 33 week preemie


wife to the best & greatest guy Eric




http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family
Back to top
View user's profile Send private message [ Hidden ] Visit poster's website Visit poster's blog
marlene
Super Member


Joined: 26 Jul 2004


Last Visit: 26 Sep 2010
Posts: 3872
Location: Quarryville,PA

PostPosted: July 11 2009, 3:52 PM    Post subject:
Reply with quote

Docs need to leave their egos at the door and LISTEN to the parents!!!! WE are the ones who KNOW our child. WE are the ones who LIVE with our child. WE are the ones with the insight and they need to come along beside us and work WITH us to figure out solutions to the problems! Prayers for you to get a listening ear!

_________________
Marlene, mommy to my precious Aleena (1/30/04)


Last edited by marlene on July 12 2009, 1:57 PM; edited 1 time in total
Back to top
View user's profile Send private message [ Hidden ] Visit poster's website
mary c
Super Member


Joined: 06 Jan 2005


Last Visit: 27 Sep 2010
Posts: 3427
Location: Westchester County, New York

PostPosted: July 12 2009, 8:01 AM    Post subject:
Reply with quote

Praying along with you. It's so easy for the doctor--they aren't dealing with the feelings of your child or having to clean up the poop! Hope that they can help you at Mayo.

_________________
Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

Please support the Down Syndrome Research and Treatment Foundation http://i139.photobucket.com/albums/q284/maryc_010/a13-1.jpg[/img]
[img]
[IMG]
Back to top
View user's profile Send private message   Visit poster's website
Adens mummy
Super Member


Joined: 22 Jan 2006


Last Visit: 27 Sep 2010
Posts: 1996
Location: Australia

PostPosted: July 12 2009, 8:49 AM    Post subject:
Reply with quote

Praying for your darling boy.

_________________
Aden's montage


Back to top
View user's profile Send private message [ Hidden ]
MommyAngela
Senior Member


Joined: 28 Apr 2008


Last Visit: 23 Sep 2010
Posts: 478

PostPosted: July 12 2009, 6:13 PM    Post subject:
Reply with quote

Oh, Ann, I'm so sorry. I will be in prayer for you, John, and the doctors. This is hard, but you're strong and you're a great mom. Smile

_________________




Angela
Wife to Matthew
Mom to three wonderful sons:
Andrew James--3/24/06
Benjamin Matthew--4/24/08 DS--VSD & ASD repaired 10/3/08, intestinal obstruction repaired 1/13/09, hypospadias & ventral hernia repaired 8/21/09
Thomas Alexander--3/25/10

www.theamicks-angela.blogspot.com
Back to top
View user's profile Send private message   Visit poster's blog
elizasmom
Super Member


NDSC Attendee

Joined: 28 Jul 2005


Last Visit: 14 Sep 2010
Posts: 2559
Location: Marin County, CA

PostPosted: July 13 2009, 10:36 AM    Post subject:
Reply with quote

Prayers for some answers. Glad that Leah is on the case too. You great momologists will crack this!

_________________
Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )

Back to top
View user's profile Send private message [ Hidden ]
shea01
Super Member


Joined: 11 Sep 2003


Last Visit: 02 Jul 2010
Posts: 3758

PostPosted: July 14 2009, 8:04 AM    Post subject:
Reply with quote

My dad had the same Gi issues John has for the last 5 years of his life. He was totally miserable. I will pray for John and your family.
Back to top
View user's profile Send private message  
Abbigailsmom
Senior Member


Joined: 18 Dec 2007


Last Visit: 23 Sep 2010
Posts: 242
Location: Browerville, MN

PostPosted: July 14 2009, 10:25 AM    Post subject:
Reply with quote

Hugs to you. I hope you will be able to find the answers at Mayo that will help John.

_________________
Stephanie Hakes, mother to Abby born 5/6/07
Reed 9/21/09

Back to top
View user's profile Send private message [ Hidden ]
Momof6
Super Member


Joined: 30 Sep 2008


Last Visit: 27 Sep 2010
Posts: 1872
Location: Cortland, NY

PostPosted: July 14 2009, 10:45 AM    Post subject:
Reply with quote

Prayers being said.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 17, Chelsea 14, Connor 12, Logan 6, Cody 4 & Austin 1 ( DS & Hirschsprungs pull through 12/8/08 )
http://www.caringbridge.org/visit/austinpaquin



Back to top
View user's profile Send private message [ Hidden ]
HannahsmomUK
Super Moderator


Joined: 03 Jun 2004


Last Visit: 05 Jul 2010
Posts: 7778

PostPosted: July 14 2009, 4:24 PM    Post subject:
Reply with quote

I'm sorry I dont have any advice for you but am certainly thinking about you

_________________







Please visit Hannah's webpage read all about her journey
Hannah's Video
Back to top
View user's profile Send private message [ Hidden ] Visit poster's website
Yailet
Super Member


NDSC Attendee

Joined: 27 Jul 2005


Last Visit: 23 Jul 2010
Posts: 1138
Location: Miami, Florida

PostPosted: July 21 2009, 3:00 PM    Post subject:
Reply with quote

praying for the doctors to come up with the right answer! I don't trust doctors anymore, I ALWAYS get a second, and most a of the times, a third opinion. Always trust your instincts.

_________________
Mami to Daniel (6/15/04)

"God doesn't give you the people you want, He gives you the people you NEED - To help you, to hurt you, to leave you, to love you and to make you into the person you were meant to be."
Back to top
View user's profile Send private message [ Hidden ]
Tigger
Super Member


Joined: 28 Jan 2006


Last Visit: 27 Sep 2010
Posts: 6532
Location: NSW, Australia

PostPosted: July 22 2009, 7:39 PM    Post subject:
Reply with quote

Praying you get a diagnosis and a solution. I hate the way doctors think it is ok to practice their pet theories on our kids - without any regard to what us mothers, who just happen to be with them 24/7, think. Grrrr.

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14
Back to top
View user's profile Send private message  
iluvmacy
Super Member


Joined: 08 Jan 2006


Last Visit: 27 Mar 2010
Posts: 1351
Location: Minnesota

PostPosted: July 23 2009, 8:23 AM    Post subject:
Reply with quote

Ann- I've been meaning to ask you this..have you ever heard of or been told about a "stool transplant"?

_________________
Alyssa- mommy to Macy (ds) 5/11/05 and Dallas 3/16/07




"Be kinder than necessary, for everyone you meet is fighting some kind of battle." Author Unknown
Back to top
View user's profile Send private message [ Hidden ] Yahoo Messenger
Display posts from previous:   
Post new topic   Reply to topic   printer-friendly view       DownSyn Forum Forum Index -> Prayer Requests All times are
Page 1 of 1

 
Jump to:  
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot vote in polls in this forum
You cannot post calendar events in this forum
Click above to help support this site
Click below to help support the DSRTF



Down Syndrome: For New Parents

Powered by phpBB © 2001, 2008 phpBB Group