Moody/Karens daughter Olivia

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  • Hood1980
    Hood1980 Member Posts: 537
    edited March 2009

    Happy Spring Olivia!  And many, many continued prayers sweetie!  We all love you & your Mom very much over here on this thread!

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

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

    Always in my heart....... hoping for good news to arrive.

    Know that the prayers continue for your return to wellness.

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

    Love  --  Kisses  --  Hugs

    To Olivia and Mom

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

    Well, well, well, Olivia KEEPS having nose bleeds.....every night......and I don't mean little bloody mucos, or a little trickle, I mean 2 box worth of tissues this one week bleeds.

    She has always been prone to nose bleeds all her life.  When she was about 5 we went to ENT and he looked and said that the membranes in her sinuses were very thin so the vessels are easily exposed.  This would explain the bleeds.

    She usually gets them according to "allergy" season, but never this bad.  Maybe one or two per season.  She has now had 7 since Feb 10th........

    I dont know if it is coincidence, side effect from meds, or a new symptom.  Doc is sending her for MORE blood work......Cannot imagine what they could possilbe need to check for that hadnt been previously looked at, but oh well. 

    I have no doubt her blood work will be normal.

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

    Karen, it sure sounds allergy related - whether atopy [external allergens] or food - but chronic sinus drainage can cause nausea.  [I remember having occasional nausea as a result of sinus problems in my teens - which eventually resolved as an adult.]  Binney mentioned eosinophilic esophagitis and this might be worth exploring.  This or eosinophilic gastroenteritis.  The etiology of both appear to be allergies - atopy or food.  [I have posted a link below on this matter.] As an aside, I was googling and found this post by someone on an "allergy" website:

    "I know drainage or post nasal drip can cause GERD, LPR, and nausea. When excess drainage hits the stomach it causes the stomach to trigger and produce acid.. only problem with the drainage and the newly generated acid is.. the drainage will not be digested and thus neutralizing the newly added acid. So the volume and concentration of your stomach acid increases.. eventually this acid gets to such a level it percolates up and down your esphogus and even into your sinuses. If you are refluxing in your sinuses this can increase the sinus aggravation and drainage. So here are a few more questions for you. Did you GI diagnose you with GERD or LPR? Do you have allergies or have you been tested for allergies....?"

    Anyway, just what someone with some knowledge about this issue wrote on a forum in answer to another member's inquiry.  We are all just throwing out anything and everything which sounds like Olivia's symptoms....

    Here is the link to a definition and explanation of eosinophilic esophagitis =  Click on "symptoms"...sounds very similar to Olivia's symptoms....

    http://www.chop.edu/consumer/jsp/division/generic.jsp?id=83825#symptoms

    Prayers, hugs....

    Deborah

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009
    Deborah, boy I hope you are right!  That would ba a simple fix I believe.  I did google that esopho thingy Binney mentioned and a lot of it fits Olivia's symptoms.  She had more blood drawn a little while ago, dont know what they are looking for now, but I am sure it will be normal.
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  • Marple
    Marple Member Posts: 19,143
    edited March 2009

    Dumb question but at this point there are no dumb questions.  Did you mention Binney's esophogeal thingy to a Dr.?

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

    Karen - Ask that a copy of the CBC lab results be faxed to you....and I hope they did a chemistry profile also???

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  • spar2
    spar2 Member Posts: 6,827
    edited March 2009

    Adding my prayers for Olivia and you.  Please Lord wrap your arms around Olivia and heal her or let the dr's figure out what is wrong and be able to fix it.  Please give her and Moody strength, courage and wisdom to keep on.  Please Bless them Lord.  In Jesus name. Amen

    Will be thinking and praying for you daily.  love and hugs. sherry

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2009

    Hi, moody,

    I guess it is a bit of mouthful.Undecided Try this, y'all:

    ee-oh-sin-o-FILL-ick   ee-soff-ah-JAI-tiss   (eosinophilic esophagitis)

    There's a team of specialists at the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children's Hospital Medical Center who are the national experts. That's where my friend finally got help for her son. Here's their web page:

     http://www.cincinnatichildrens.org/svc/alpha/e/eosinophilic/about/default.htm

    Why not just contact them and ask some questions? Can't hurt.

    Prayers for peace and healing,
    Binney

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

    Thanks for the link binney, I like "esopho thingy" much better though....more fun to say.  LOL

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

    She had a pretty good day today.  She went to a friends house to watch "Twilight" and then they came back here and made a few videos. 

    She did not have a nose bleed last night either.  I have a feeling that she won't have them anymore.  Kinda like you take your car to the mechanic and it quits acting up.  Either that, or what ever is wrong with her likes to dodge tests...LOL

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

    So glad to hear she had a better day

    ((((((HUGS))))))

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

    i'm dancin' happy that she's had a pretty-good day.

    grateful for a repreive. (can't think how to spell that word in my tiredness, but hopefully you get the idea. LOL)

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

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  • Marple
    Marple Member Posts: 19,143
    edited March 2009

    Such lovely news to hear.  May it continue.

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2009

    Karen - Good days are nice news. Here's hoping for a lot more good days!!!!!!!!!!!

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  • dani42
    dani42 Member Posts: 423
    edited March 2009

    Moody,

    I just came across this thread and happened to see the post on the nosebleeds first.  I have read through all of the postings before responding.  First of all, I am so sorry for all that you and your family are going through. As if cancer wasn't enough to deal with, this must have brought you to your knees.

    You had mentioned something regarding her liver early on in your postings and that is the red flag that I am seeing. My mother has suffered severe nose bleeds, even with clots, vomiting nausea and stomach pains.  She was at deaths door and it ended up being liver disease.  She went to Dr Roy in Syracuse NY and he saved her life.  She had a liver biopsy and that is where they were able to see the problem.  She is closely monitored but it is kept under control by antibiotics. 

    We have had a lot of luck at Syracuse University Hospital.  My husband had a kidney stone and had to go to the emergency room here in town.  The stone perforated his uretha and the scans also showed a portion of his lungs were black.  They took a second scan that showed his lungs were all black and there was urine in his belly. They took him by ambulance to Syracuse University Hospital, which is a teaching hospital.  They he had three teams of doctors coming in non-stop to ask him questions and examine him.  He had surgery to repair the kidney damage and by midnight that same night, they had predicted that he had Sarcoidosis.  He went back for a lung biopsy and sure enough, he has Sarcoidosis.  I was so impressed because that is a rare condition and they called it on day one.   

    I know Syracuse is very far for you but is there a teaching hospital near you?  Perhaps you can talk to your doctor about her liver to see if that is a possibility. 

    I hate to throw more on you if this has already been explored.  Also, if I read correctly and her pitutary gland is missing, has she seen and endocronolgist?

     I will pray for healing for both you and your daugher.

    Dianne  

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

    Good afternoon.  She had a decent weekend and is doing okay today.  She is still nauseated, but she is doing her school work without complaining of the reading making her dizzy, so I will take what I can get.

    She got braces this morning and is doing real good with those too.  She was a bit worried that having to lay back in the chair with her mouth open may cause her to feel worse, but it didnt and she never said a word, so that is also great.

    The "sad" thing is, she said she is just starting to get used to the nausea as a new way of life for her...........Gosh there is so much emotion with a statement like this!  On one hand, I am thrilled she is learning to deal with adversity better, on the other hand, I am afraid it is a sign of how hopeless she is feeling inside.

    Because I am such a "pollyanna" I am going to say it is her learning how to deal with adversity better........

    Dianne, Thanks for your suggestions.  We are scheduled to be at Wake Forrest University Hospital in Winston-Salem, N.C. Apr 6th.  Her doctor is an associate professor for the medical school -pediatric division.  They specialize in unexplained nausea............lets hope they can live up to thier reputations...

    She has been evaluated by an endo doc.  She actually has a small amount of pituitary tissue on the bottom of the sella floor and it appears to be doing the work of a whole gland.  Her hormones were "normal".   lol

    Thanks for the suggestions as they are always welcome.  I still have my money on someone form this thread accurately dx'ing her before the docs do!!!!   

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited March 2009

    Karen, Wake Forest is a great hospital to go to. It is about 2 hours from my home.

    Olivia is still on my church's prayer list.

    Sheila

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

    Well, I have had two very "interesting" phone calls today. The first one was from the lab who did Olivia's blood work last week. They said something "happened" with the CBC and they needed to redo it. We (me and the lab techie) sorta laughed, as it is ironic that this would happen to Olivia of all people.

    The second phone call just came from the pediatrician's nurse. She said that Dr. Johnson wants to do a follow-up visit with us on Wednesday. She said that her blood work had come back and there were "just a few things" he wanted to go over with us. So while I am hoping we are getting close to an answer, I have a little bit of butterflies too.

    If they were able to identify the cause, wouldn't he just tell me over the phone, then give me instructions as to meds or other docs? If the blood work is normal and he obviously knows we are scheduled to go to Wake Forrest in 2 weeks, he wouldn't really need to see us would he? So, I am not sure whether to be relieved, or apprehensive. But don't worry about me, I will figure it out and be just fine. LOLAnyway, on about her day. She has had another "decent" day. Yes she is still nauseated, but I believe she is learning how to handle it better.She got braces this morning. This is her second "go-round" with them, so at least she knew what to expect. She has done pretty good so far. They only put them on the top too so that is good. She will get the bottoms in 6 weeks.
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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2009

    Karen - That's an odd call from your pediatrician. I wonder whether it is related to the call from the lab? And I wonder why he is making you wait until Wednesday. It must not be anything too critical if he wants to wait a couple of days. I cannot phathom what the calls were all about. But at this point, I would think that ANY news is good news. I am so glad that she has had a few better days. Hang in there. And give her my love. Take care.  - Jean

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  • Journey
    Journey Member Posts: 905
    edited March 2009

    Hello Karen - I so hope this means you are closer to the answer.  Hugs and prayers. - Gretchen

    PS - Bless Olivia's heart!  Braces too!!! She must be a real trooper Cool

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

    Oh Karen, I sure hope this might lead you all in the right direction and PRAY it is treatable.

    Hang tight friend...

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  • YvonneB
    YvonneB Member Posts: 302
    edited March 2009

    Crossing my fingers and toes and then praying like crazy that they finally have an answer!!  I'm so glad that Olivia is feeling a bit better though it breaks my heart to think that she is just learning to cope with this condition....so unfair.

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  • EWB
    EWB Member Posts: 2,927
    edited March 2009

    Oh Karen, we were away this past week and I was so hoping things would be much improved. My prayers are with you all; Olivia is one tough cookie! So sad that she has to be at such a young age.

    Sweet dreams and gentle prayers,

    Elaine

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

    Karen, I'm still praying for Olivia and your family - I hope you have a clear answer soon and something easily treatable ...  since the doctor didn't say STAT I'm thinking it's some more info - but not conclusive (or not something dire). I just know that you'll get some answers soon - and hopefully it will be right around the corner.   The blood test thing sounds pretty strange. 

    Love and Hugs,

    Doreen 

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  • Daffodil
    Daffodil Member Posts: 829
    edited March 2009

    Olivia, Misty the Lab says everything will be coming up daffodils, real soon!!

    Love and hugs,

     Aunt Daffodil

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

    Hello all.  Olivia had another nose bleed last night......I figured we had scared them off.........

    I am so full of anxiety tonight not knowing what the doc will say tomorrow...

    Is he planning on having a "heart to heart" with us telling us there is nothing wrong with her and we just need a psychologist? 

    If her blood work showed "something" why didnt they just tell me what and what to do next?

    It is something alarming and he wants to do a physical exam to confirm it?

    Is he just infatuated with my beauty and wants to ask me to leave my hubby for him?

    So many questions and don't know that I want the answers........You guys know EXACLTY what I am talking about because each of us has been there.

    Something is "up" with that "CBC" needing to be re-done.  I am almost positive it wasn't a lab error, but a need to recheck something that was alarming.  I say that because besides the fact of how wierd everything was yesterday, tonight we went to have it redone and long story, but the nurse went to GREAT lengths to be sure I couldnt see the paper work......She finally just turned it over so I could see nothing. 

    I will post as soon as we get back.  Her appt is 11:15 EST.

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

    Karen I am still praying for each of you. I understand why you are stressing. Much harder when it is our child. Start saying God I need you to help with whatever comes. He is and always will. But what ever the news you are strong and so is Olivia. God bless you.

    Susan

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

    11:15 am praying for her at that time... 11:15

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