Moody/Karens daughter Olivia

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  • Estepp
    Estepp Member Posts: 6,416
    edited February 2009

    Karen.. do not go home this time until they are 100%  sure what she has.! Please!..

    God Bless you.... God Bless you!

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited February 2009

    Karen I'm so sorry to read about Olivia's illness..........have you tested her for food allergies? What about carbon monoxide poisoning? It can settle in a person's blood and cause nauseousness and weakness. It's just an idea - I wish I could help more - I'm praying that the Holy Spirit will illuminate the minds' of these doctors to help them discover what's going on - hang in there sweetie!

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  • psalmist
    psalmist Member Posts: 214
    edited February 2009

    I wish you had Mayo Clinic nearby. 

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  • Daffodil
    Daffodil Member Posts: 829
    edited February 2009

    There's a Mayo Clinic in Jacksonville, Florida, which is not that far!! Our friend is in the endocrinology department, and I will contact him if that seems to be an option for you.

    Olivia, here's a puppy kiss and kitten lick for you!

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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited February 2009

    Starting my day with continued prayers for this entire story.

    Praying that the medical staff at hand have enlightened minds today.

    Praying that the insight necessary to reach a conclusion dawns & lights up the room.

    Olivia....... know that we are praying round the clock for your wellbeing & strength. We're praying for your whole family in the midst of all of this.

    ((((((((((((((((((((((((((Olivia)))))))))))))))))))))))))))))

    ((((((((((((((((((((((((((Karen))))))))))))))))))))))))))))

    xx00xx00xx00xx00xx00xx00xx

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited February 2009

    Keeping you both in My Prayers!

    Pam

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  • Estepp
    Estepp Member Posts: 6,416
    edited February 2009

    Olivia... God Bless you and keep you and heal you !

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  • Journey
    Journey Member Posts: 905
    edited February 2009

    Always praying for answers....

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  • whippetmom
    whippetmom Member Posts: 6,920
    edited February 2009

    Praying for Olivia this morning.  I also want to know how that egg sandwich they give you prior to that  scan really tastes...

    I know this is yet another frightening thing for her, which only adds to her nausea symptoms...

    We are all praying for an answer - some clear diagnosis and make it a simple one please Lord!!

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009

    We went to the GI doc yesterday.  She is back down to 79 lbs........He has ordered a "gastric dumping scan" for her, we are just waiting for them to call with an appointment time and day. 

    This scan will be down a Scottish Rite and will last over a couple of hours.  He said they would give her some food and watch it go down.  Then scan several different times over the next several hours to see how it is digested and moved through.    This test will show them (I believe this is right, but I might be wrong) how the digestive muscles are working and/or reacting with food. 

    I dont think it tells them about what or which enzymes are being/not being released.  But it is something that could give us a indication about what is causing this.   I have been in touch with her schoolu counselor. 

    The docs from Scottish Rite had already filled out necessary paper work for her to qualify for a "home teacher" but I was holding off hoping she would be okay.  So now we are going to have to do this until her symptoms are either controlled, gone, or she has been cured........  

    I have received two GREAT leads from people suggesting doctors and conditions.  I am trying to decipher the research.....but both are VERY intriguing.  One is called "XPC"  and one thing that "stuck out" to me was there is an association with the BRCA 1 & BRCA 2 .  I dont understand yet what I am looking at, but it is worth looking into.   some of you medical guru's want to see the link I am going to try to read it is here:  http://www.genecards.org/cgi-bin/carddisp.pl?gene=XPC

    Another one was "H-Pylori" which I have never heard of either.  A doctor at Emory Child Center for Gastroenterology has found children with this with similar symptoms.   

    So please keep sending suggestions and questions.  It may take a community to raise a child, but it seems to take the whole southeast to cure a child (of course God does the curing.......LOL)  

    Just keep praying.

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009

    swimangel I havent had her tested yet, but if every G.I. avenue gets exhausted, then that is where I will pick up with I guess.  Only thing is I have tried "home testing" by removing common food allergy things like dairy and chocolate, etc but no difference

    daff dont think I am above taking a road trip to florida.....LOL  DO you live in Jacksonville?

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2009

    Hey, it's not just the Southwest, Canada is in on this too! LOL

    H-pylori causes stomach ulcers. Or at least keeps them acitve and unable to heal. I would have hoped they would know if this is a stomach ulcer by now!

    Heavy prayers from the Great White North.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Definition

    H. pylori infection occurs when a bacterium called Helicobacter pylori (H. pylori) thrives in your stomach or the first part of your small intestine.

    H. pylori infection may be present in about half the people in the world. In industrialized countries the infection rate is about 20 percent to 30 percent, but in developing countries the infection rate may exceed 70 percent. However, most people who carry the bacteria experience no signs or symptoms of infection.

    H. pylori infection is the most common cause of stomach ulcers, and it also causes inflammation of the stomach lining. H. pylori infection may also contribute to stomach cancers and other digestive system cancers.

    Antibiotics used to eradicate H. pylori bacteria are usually part of a multiple-drug strategy to treat disorders caused or worsened by H. pylori infection.

    Link - MayoClinic

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  • whippetmom
    whippetmom Member Posts: 6,920
    edited February 2009

    I am reading a book right now about a case of XP - xeroderma pigmentosum - very rare genetic disorder - which does not sound like anything Olivia might have going on.  XP has to do with deficiencies in processing ultravoilet light...the body's DNA is unable to repair UV damage, thus resulting in skin cancers - ocular cancer....  That link though....whew.  I don't know if that is subject to interpretation.  Perhaps the person who found it and sent it to you has the ability to interpret?

    We just keep praying that this GI dumping scan will give you some answers...

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009

    barbe, you are right it is actually a multi-country effort.  I sorta cheated with my post as I copy & pasted it from my "mass e-mail" I had sent to my family/friends/church family/clients, and they all live in the southeast.  I guess that is what I get for short cutting LOL

    THANKS PEOPLE IN CANADA Laughing, UNITED STATES, Laughing, and JAPAN Laughing (those are the countrys I know of)

    Whippetmom- is XP the same thing as XPC?

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009
    Always, thanks so much for the info.  I dont think she has this because she has no pain and no ulcers.  I really want to PM you, but I cant.  I am really worried about you.  Will you PM me?
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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009

    Hey JO-5 thanks for your sweet words.  On this thread, page 3, 5, 6, & 7 are the posts about what is going on with her .  These were done while she was in the hospital and there are pictures of her on page 6 & 7 (i think-maybe pg 5) 

    She has been very sick.  We spent 10 in the hospital at Sottish Rite in Atlanta.  Came home thinking she was on the road to recovery........NOT.

    So thank you for continuing to pray for her!

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  • Daffodil
    Daffodil Member Posts: 829
    edited February 2009

    Karen, I am in Maryland. The doctor friend was at Walter
    Reed for years before being asked to come to Mayo.

    Let me know!

    Meanwhile, the home teacher will be a big relief, I imagine.

    I know Olivia misses her friends, but hopefully they can stay in touch via PCs and text!! Don't want to jeapordize her little immune system! Keep the faith, baby!

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009
    daff your just saying you live in "Maryland" cuz your afraid I'll show up on your doorstep. Laughing
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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited February 2009

    Popping thru with prayers from the ocean. I've landed safely @ my destination.

    Praying this test is scheduled sooooooooooooooon & fills their heads with insight & understanding.

    I think the home-teacher-tutor route is a blessing: open your arms to it.

    xx00xx00xx00xx00xx

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  • DianaT
    DianaT Member Posts: 532
    edited February 2009

    Moody ~ I am praying for you and sweet Olivia!! I do hope the doctors can find out what is going on.  I would also like to post the number again, so it shows up on every page, if you don't mind.

    770-388-6901, after the short message dial 111# and it will let Olivia know we are praying for her.  This system is so neat, reminds me of the movie line "when a bell rings, an angel gets its wings", when the pager buzzes, a prayer is said for Olivia!

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  • whippetmom
    whippetmom Member Posts: 6,920
    edited February 2009

    moody:  Yes, it is the same thing - XPC is just the xeroderma pigmentosum complementation study group C....Olivia does NOT have XP - If there is a motility disorder as culprit here, that dumping scan is going to find it for you.  I am praying you get in there this week...

    Deborah

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009

    diana, thx so much for posting her # again!  Her pager goes off- her face just lights up!  I started another prayer thread for you on the new forum

    whippet, thanks for the info, now I know I dont have to get a medical degree to read that one page!

    Have you been to the new forum?  We now have 43 members!  Hope to see more of you guys there too!

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  • rockwell_girl
    rockwell_girl Member Posts: 1,710
    edited February 2009

    Karen I'm still thinking of you and your little girl

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  • kbugmom
    kbugmom Member Posts: 15,189
    edited February 2009

    Dear Heavenly Father I pray and ask believing that the cause of this blessed childs sickness will be revealed. So the drs may know how to treat her. But Lord I know you can heal her also. I ask you give the family a peace that they so need. I am thanking you for a good report ahead of time. I praise you and thank you dear Lord. Amen

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited February 2009

    Karen, I know you've been getting so many suggestions, and maybe this one has already been ruled out, but just in case it can help, I'm posting links about "cyclic vomiting syndrome" or "CVS."  It seems to be somewhat related to migraines, and may tend to occur in families that have some migraine history.  It seems to occur mostly in children through pre-teens, although it can occur at any age. 

    http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/index.htm

    http://www.mayoclinic.com/health/cyclic-vomiting-syndrome/DS00835

    http://www.cvsaonline.org/  (This is a family support group for families affected by CVS)

    Anyway, whether these links are of any help or not, you and Olivia are in my prayers.

    Ann

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  • Daffodil
    Daffodil Member Posts: 829
    edited February 2009

    Now, Karen, you know I invited everyone to my house so we could march on Congress, lift our shirts, and demand cancer testing, care, and research!!!

    Olivia, this is the kind of puppy going to live in the White House!

    ~~~Blessings on you all~~~

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  • kmccraw423
    kmccraw423 Member Posts: 3,596
    edited February 2009

    I am so sorry to hear about your daughter, Olivia.  I will call her and pray for her.  I can't even imagine how frustrating this is for you and Olivia.  While I read this whole thread I held my breath hoping everything worked out.  It was only when I read the part about the symptoms returning did I let my breath out with one word - damn.

    I know the good Lord will watch over her and heal her.  She is a precious child of his and btw she is just adorable.  Please tell her I have a cat named Oliver and he sends his love too!

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009

    AnnNYC thanks for your suggestion regarding CVS.  She does not ever throw up- just feels like she is going to.  She also doesnt have head aches.  So I suppose she would not have CVS.  But I sure appreciate any and everything people mention, it helps "mark it off" the list!

    kmc, love your little dog!  tooo cute, and Daffodil, cute puppy dog!

    JO-5, she does not have a pituitary gland, but she has a little pituitary tissue on the floor of the sella cavity.  This tissue so far is doing to work of the whole gland.  Which is great.  It is such a rare condition!  She will just have to continue to have her hormones checked to make sure this small amount of tissue continues working.

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009

    Last year I gave testimony at my church.  If you would care to hear it go here:

    http://www.survivorbiblestudy.com/My_Testimony.html 

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