Moody/Karens daughter Olivia

Journey

I wish we had a medical team like the one on the TV show House to help figure out what is wrong!  Just know we are still praying.

faithandfifty

Who can get us into the "House" storyline? Maybe their consultants could shed some light on all of this.....

Prayers continue.

Prayers continue.

Prayers continue.

bkc

I second Journey's wish. Still praying for Olivia. Hope she is feeling better soon and you all are able to get a night of uninterrupted sleep.

 Just seems that this has been going on so long that the Doctors would move faster to get these tests done. I feel sick just thinking about Olivia having to go through this and all the waiting you all have had to do.

You hang in there and know that all of us here are thinking and praying for you to find the answers and that Olivia will be better soon.

livesstrong

Just found this online - it shows allot of Olivia's symptoms -

Addison's disease Written by Adam Brochert, MD Last reviewed on 11/5/2006

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Overview

Addison disease occurs when the adrenal glands are no longer able to produce certain hormones needed for life, such as cortisol and aldosterone.

What is going on in the body?

There are two adrenal glands in the body, one on top of each kidney. They produce two hormones: cortisol and aldosterone.

Cortisol is a type of hormone called a glucocorticoid. It affects almost every organ and tissue in the body. Experts believe cortisol may have hundreds of effects, but its main job is to help the body respond to stress.

Other vital tasks of cortisol include the following. • It helps maintain blood pressure, heart function, and blood vessel function. • It helps slow the immune system's inflammation response. • It helps balance the effects of insulin in breaking down glucose for energy. • It helps control the metabolism of proteins, carbohydrates, and fats.

Cortisol is vital to health, so the body maintains a precise balance. As with many other hormones, the hypothalamus and pituitary gland are key to this control.

Aldosterone is a type of hormone called a mineralcorticoid. It helps with the following functions: • maintains blood pressure • maintains water and salt balance in the body by helping the kidneys hang on to sodium and get rid of potassium

What are the signs and symptoms of the disease?

In most cases, the symptoms come on gradually. Addison disease commonly causes these symptoms: • skin changes with areas of dark tanning, which is most visible on scars, skin folds, mucous membranes, and pressure points such as elbows, knees, and knuckles • low blood pressure, which may cause dizziness or fainting if a person stands up too fast • nausea, vomiting, and diarrhea • chronic, worsening muscle weakness and fatigue • loss of appetite and weight loss • irritability and depression • craving of salty foods due to salt imbalance in the body • low blood glucose levels, called hypoglycemia, which is more severe in children than in adults • irregular or absent menstrual periods in women

If symptoms progress too long without treatment, the person may go into an addisonian crisis. Symptoms of this crisis include: • sudden, piercing pain in the abdomen, lower back, or legs • severe vomiting and diarrhea • dehydration • dangerously low blood pressure • loss of consciousness

Mykidsmom

Karen - I wonder - with the combination of what you are seeing and her upcoming test, there just might be a dx coming soon. BTW: My daughter had the same test many years ago. The test itself is not difficult, but then my daughter had not been dealing w/ nearly as much as Olivia has had to deal with. Thoughts and prayers are with you my dear! - Jean

Anonymous

thoughts and prayers going out for Olivia and for Karen and her DH.  Karen I really hope that the doctors will figure out what is going on with Olivia really soon - poor thing in suffering in so many ways - the physical pain she's experierncing as well as the loss of normal childhood things - not being able to be carefree, not being able to do normal things like playing in the snow.  My heart goes out to you and to Olivia ...  I wish the test could be done sooner and some progress would be made on getting a diagnosis so she can get better....

Hugs,

Doreen 

Hanna60978

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moodyk13

okay, you ladies have given me a new avenue to investigate.

 She is pretty much only eating pretzels , she has already been dx's with Empty Sella even though hormones are normal...........

I have some research to go do now.  Thanks!

LuAnnH

since she is eating pretzels did you try fixing the hot soft pretzels for her.  Maybe more calories that way.  If she tolerates that you might be able to put a little meat or cheese inside them to help get more into her.

wahine

Olivia dear, Been praying and calling your prayer pager while on vacation. I hope and pray that the doctors will soon find out what is causing you so many problems, and can start getting you well.  Hang in there, and I hope you will feel comforted by all the love and prayers that are being sent your way.

Hugs and Love,

Kathy

moodyk13

I will try the hot soft pretzels, I hadnt though of that.  Thanks for the suggestion.  I have an appt with her pedi today because she is down to urinating only 1-2 times a day, very concentrated, and not a very big amount.

I still am reading up on Addison's disease and am going to talk to her pedi about it and some other things I found yesterday.  I thought that I would list here her current symptoms with a timeline, because you guys are so sharp that someone may see something that causes an "Ah Ha!" moment!  LOL

Symptoms and Patterns:

--Chronic nausea w/OUT vomiting: intensifies 30 min - 2 hours after a "meal" ( by "meal" I mean like mashed potatoes, or 6" sandwich, little meat w/ a veggie).  Also gets stronger at night and interrupts sleep at least once sometimes twice.

--Esophagus feels tight just above larynx all the time (she never mentioned this until last week but said it has felt that way since all started....)

--13 lbs weight loss

--Heartburn, but not chronic, not always requiring meds, 3 - 4 x's a week

--Lack of urination: 1 - 2 x's w/in a 24 hr period, very concentrated, about 200 - 400 cc's each

--Feels worse standing, sitting straight up, or laying flat.  Feels best sitting back at about a 45 degree angled position.

--Gas pains about once daily but typically "short lived" and passes (probably from the banana)

--Weak, fatigue, sometimes "light headed"

--Feels better when crying real hard - she was doing this Sunday and I told her she was going to feel worse, and she said, no I dont feel nauseated if I am crying!  I thought about what our body does muscularly when we cry and there is a def "bearing down" on the diaphram and abdomen......

--Feels less nauseous when excessively swallowing salivia (also a slight "bearing down" motion...)

One thing I found in my searching yesterday that was very interesting is the "Vagus Nerve", they are also testing this friday for "gastroparesis" by doing the "gastric dumping scan"

Tests done to date:

CBC, CMP - normal

Hormone levels - normal

Abdominal ultrasound - normal

HIDA scan - normal

Brain MRI - "Empty Sella Syndrome" but with a small amount of pituitary tissue that is functioning as a whole gland right now.

Endoscope - normal

Here are some conditions I have been looking into:  cyclic nausea, gastroparesis, gastric hypomotility, small bowel dysmotility, other gastric dysrhythmias, gastrointestinal motility, vagu nerve damage, addisons disease.

Help?  Ideas?  Thoughts?  Diagnosis?  Cure?  Anyone?  LOL?

kbugmom

Dear Lord I come before you. Asking for healing for Olivia. Lord I know there is a purpose for all things. It has made us all come together here to pray for one anothers needs. So I trust and believe you are touching this dear child. I thank you for all you do. Amen

LuAnnH

What about a thyroid problem?  First thing my onc check when I had trouble swallowing was my thyroid levels.

moodyk13

Just got back from pediatrician  He has ordered a bladder and kidney ultrasound.  I think more so as a precaution b/c even though she isn't tinkling very much, it is "normal" - whatever normal is....

faithandfifty

Starting the day with continued prayers for Olivia and for Karen and for the team of angels who are working diligently to get to the bottom of this.

How I wish I were a medical detective and could find the missing piece of the puzzle.

Karen, I think that your list above will put the 'better' medical minds here to work.

Praying for your strength in the face of all that is unfolding.

Are you feeling like Job?

The prayers will continue as long as they are needed. Period.

Rest well, when you are able.

rockwell_girl

Karen I sure hope they get somewhere with those test

marshakb

Karen,

This is just crazy!  My heart is breaking for Olivia.  I know she just wants to be a kid, go out and play and have fun.  It is so frustrating that the doctors can't get a handle on what is  going on with her.  I will continue to pray for her and your family.  This sucks!!

psalmist

Laura,

It does sound like a diagnosis is getting near.  I pray for Olivia to tolerate food other than pretzels and that her strength will begin to grow every day.  I also pray for your continued strength.  You have a lot on your plate -- but God who is rich is mercy is helping you with it, that much is obvious.   Your attitude is amazing.  Keeping the faith on you and Olivia's behalf,

LuAnnH

Cleveland Clinic is an awesome idea.  I know it is about 5 hours away but I could be free to help with staying with Olivia if you chose and option like this.  Still praying and have spread her pager number to my friends.

whippetmom

Karen, just a little small suggestion of something to help in the interim...

I remember my sister went through a horrid three month period when my nephew [now 20] was ten years old...with nausea symptoms - crippling nausea - which, after many diagnostic tests which were all negative - sort of caused them to realize it was anxiety-induced - school related.  It resolved after three months...

But anyway, that is not the suggestion.  The suggestion is something having to do with food.  My sister kept a supply of gingersnaps - the most potent ginger embued cookies you can find work best - [Trader Joes has them] and gingerale [actually works better if it is flat, not fizzing]...and this is what helped considerably with the nausea symptoms. My nephew went through boxes upon boxes of gingersnaps.  Also, ginger candies would be helpful.  Just one idea which might help with symptoms while you are trying to figure out what is going on here.... 

GrammyNancy

Continuing to pray for Olivia!  I wonder if some of the dizziness and weakness isn't caused due to the fact that she is not eating very much.

moodyk13

whippetmom,  I KNEW THERE WAS A SEASONING THAT HELPED WITH NAUSEA, I JUST COULDN'T REMEMBER WHICH ONE!!!!!!!  I SPENT HOURS LOOKING AND COULDN'T FIND IT!!!!!  THANK YOU SOOOOOO MUCH!!!  LOL  CAN YOU TELL I AM EXCITED????

I am going to the store on my way home from work to get those things.  As you can tell, it was driving me CRAZY and I thought it was ginger, but since I couldn't confirm it, I havent tried it.

I am not at all against going out of state to get a diagnosis and a cure.  In fact I have spoken with her GI about taking her to Wake Forrest Med Center where a researcher is who has found some GI diseases and treatments that are brand new.  He said he would refer us if needed.

Regarding anxiety induced nausea.  Yeah, we absolutely thought of that.  In fact, that was my FIRST thought as it seemed to come right at final exam time.  Only thing that didnt make since was that she was a straight "A" student and wasnt required to take her finals.  It continued on and off throughout Christmas break and she complained about it even during fun times doing fun things.

What is so amazing about her is how smart she truly is.  She is able to recognize when anxiety is causing her to feel nauseous vs. when her nausea causes her to feel anxious, there by exascerbating the nausea.

She is able to control her nausea when it is "anxiety" induced without medication.  She just distracts her mind.

Then when her nausea is causing anxiety she does the same thing-distracts her mind to ease it.

But her nausea is so strong that it wakes her up at least 2 x's a night.  And she is unable to sleep during the day............

She cried because she felt too bad to play in the snow Sunday.  She LOVES snow.  She is missing dance and youth group.  She is just so weak, she can't stand more than 5 minutes.

thanks for the continued suggestions and prayers and ideas.  I really really appreciate them!

LuAnnH-----Im coming to your house, dont even try to hide.

Estepp

I have no suggestions, but I will continue to offer prayer... Lord, hear our prayer for Olivia, for her healing. Help her parents deal with all this and continue on this mission to find this cure. In Jesus name. Amen.

kmccraw423

Continued prayers and well wishes to Olivia.  Karen - this must be very frustrating for you and your husband.  God grant you continued strength.

Mykidsmom

Oh Karen - It is time for an answer for your daughter. Enough is enough. I pray that it comes to you soon. I so feel for you and your daughter and the rest of your family. I can't help, but I can pray. Take care! - Jean

moodyk13

Well in all my excitement about the ginger thing I forgot to post about yesterday.

Olivia is down to urinating only once in a 24hour period.  I called her pediatrician and he saw us yesterday.  What is so wierd, is her urine STILL tests "normal".  It is very dark and concentrated.....but they say whatever it is they test if for is normal.......UUGGHHH

But , he has ordered an ultrasound of her kidneys and bladder.  One encouraging thing he said "they will probably find that she has a common condition with uncommon symptoms".  My response?  .... "Figures"

rockwell_girl

Karen I share hope something comes to light soon

psalmist

Lord, guide these doctors and give them wisdom for Olivia.

whippetmom

Karen:  That whole anxiety thing for my nephew came at a time when kids are expected to give book reports - you know - get up in front of class - and he was an excellent student but very shy at that age and HATED having any kind of attention drawn to him.  So when they could not come up with a diagnosis and a US and MRI and upper GI's were negative, that was the ONLY thing which they felt might be the cause for the nausea.  He would lie on the floor of his bedroom, doubled over in agony from being so nauseated.  So, my sister took him out of school and home schooled him that year and he returned to school the next year....no further issues.  He is in college now, working on his degree in psychology. 

I did not mention this to you earlier - because I recall that Olivia really enjoyed school - felt terrible about not being able to be in school - so the performance anxiety issues did not seem to fit her profile at all. 

I think that we all who visit here just feel so desirous to find an answer for Olivia's medical issues.  God knows the desires of our hearts....we trust Him with the outcome.

Deborah

LuAnnH

Common thing with uncommon conditions.....well lets hurry up and find it already!!!!  I feel so bad for poor Olivia, does she need another kitty?  I will be on my way out if it will make her smile    I'll keep praying for her.  Karen, I think this was your ploy to get me praying more