Sunday, November 9, 2008

Mystery Diagnosis.....

I feel like this is what it's like at our house lately. Yesterday started out with Chloee not feeling well. This is how she spent her day, in the "assumed position" that is common for when she gets her headaches.

She stayed like this the majority of the day, although she did get up and go to Wal-mart with me to get some groceries. But it wore her out. So I waited till Andy got home from work then decided to just take her up to PCMC for an evaluation. The ER was hoppin but we got back to a room fairly quickly. Then we waited.

She passed time reading some books while they monitored her since she had passed out in the ER waiting room. (Hence the reason we got back to a room so quickly.) She had been complaining and really crying that her head hurt really bad when we got out of the car once we were up there, and like a fool I made her walk in.

So while we waited she read Santa and the Reindeer some books out loud...(long but cute story that I will share another day when I am thinking straight.)

We went over her history, which although it isn't quite as extensive as Rhett's took longer because they couldn't just go read up on her. They took her down to CT, and she was super good during her scan. Then we came back and they did an EKG on her. After the EKG, they did a test where they took her blood pressure while lying down, then sitting up, then standing.

The CT came back normal. Thank God. No worries there. I was so relived I was jumping up and down for joy. Her EKG looked great too, so no issues with her heart. But the blood pressure test she failed. Quite badly actually. While she was lying down her blood pressure got pretty high. Then as she sat up it dropped a little, and when she stood up it dropped alot. Then she started complaining of seeing colors out of the corners of her eyes and hearing the mice squeak in her ears again.

So they put an IV in her just in case she was dehydrated and gave her a bit of sugar just to see if it helped since her blood sugar levels were a little low, but not anything to be really concerned about.

Here she is getting a bolus of IV fluids, some Zofran, and some sugar......

They then did the blood pressure test again, and got pretty much the same result. So here is what they think is going on.

1. She has Postural or orthostatic hypotension: This is a sudden drop in blood pressure when you stand up from a sitting position or if you stand up after lying down. Ordinarily, blood pools in your legs whenever you stand, but your body compensates for this by increasing your heart rate and constricting blood vessels, thereby ensuring that enough blood returns to your brain. But in people with postural hypotension, this compensating mechanism fails and blood pressure falls, leading to dizziness, lightheadedness, blurred vision and even fainting.

Postural hypotension can occur for a variety of reasons including dehydration, prolonged bed rest, pregnancy, diabetes, heart problems, burns, excessive heat, large varicose veins and certain neurological disorders. A number of medications can also cause postural hypotension, particularly drugs used to treat high blood pressure — diuretics, beta blockers, calcium channel blockers and angiotensin-converting enzyme (ACE) inhibitors — as well as antidepressants and drugs used to treat Parkinson's disease and erectile dysfunction.

Postural hypotension is especially common in older adults, with as many as 20 percent of those over age 65 experiencing postural hypotension. But postural hypotension can also affect young, otherwise healthy people who stand up suddenly after sitting with their legs crossed for long periods or after working for a time in a squatting position.


2. Multiple system atrophy with orthostatic hypotension: Also called Shy-Drager syndrome, this rare disorder causes progressive damage to the autonomic nervous system, which controls involuntary functions such as blood pressure, heart rate, breathing and digestion. Although multiple system atrophy can be associated with muscle tremors, slowed movement, problems with coordination and speech, and incontinence, its main characteristic is severe orthostatic hypotension in combination with very high blood pressure when lying down. Multiple system atrophy can't be cured and usually proves fatal within seven to 10 years of diagnosis.

Let's just say we are praying our hearts out for it to be the first one and not the second one. I don't know that I could deal with watching my daughter, one of my very best friends go through such a horrible disease. Not to mention it significantly shortening her life span.

So tomorrow we call the neurology department and get an appointment. The ER Dr. made it very clear that they are not to ask for any money up front, that this testing needs to be done ASAP so that we know what we are dealing with. Once again I am blown off of my feet. I always joked to everyone that Chloee was the only one of our kids who didn't have health issues. Guess I stuck my foot in my mouth on that one eh?

Ah, such is life and that is the way we go, breath by breath, moment by moment, and day by day.

Andy and I have both decided that we will either start or end our posts on our blogs with something we are thankful for.

Today I am thankful that Chloee does not have a tumor or cancer.


Niksmom said...

Oh, Pma! I've been thinking about you guys ALL DAY today. I'm so glad you took her to the hospital and so grateful that the ER doc has at least pointed you insome direction. I am praying that it is not the Shy-Drager thing!

I hve to say, the smile on Chloee;s face in the pic where she's getting the Zofran, etc...*THAT* looks like the way I've seen her in older relaxed and happy.

Please giver her a kiss on the forehead from me and Nik? I wish I was close enough to some see you guys. I feel like you're practically family now! xoxo

Niksmom said...

Ok, sorry about the typos (tears). Mean to say "give her a kiss..." and "come see you guys!" &-p

Cathy said...

This absolutely breaks my heart. I hope that you can hear some good news when you meet with the neurologist. She looks like she was a trooper at the hospital.

AZ Chapman said...

pam I hope it is the first one I hope Chloe gets well soon I am glad that dose not have a tumor or cancer I will be thinking of her tomorrow at school

Hugs ( pass them on to her)


AZ Chapman said...

pam I hope it is the first one I hope Chloe gets well soon I am glad that dose not have a tumor or cancer I will be thinking of her tomorrow at school

Hugs ( pass them on to her)


My Three Sons said...

I'm so glad you got her to the ER and they were able to get her the MRI that she needed. I know this must be very scary for you. Please know that your family is in my prayers.

I would like to add that I'm very thankful that you are in our lives.

Call me if you need ANYTHING.

Carey said...

I'm thankful it wasn't a tumor or cancer also. But not having answers is so difficult. Think positively though, surely, surely there's an explanation. Don't talk yourself into, ... well it could be. I always do that. I'm really working on not worrying so much, please try to do the same. She's young, she's healthy, she's beautiful. Hang in there Mom, once again, you're the rock. You can do this. Love to you all.

momtojesse said...

Pam, I'm so sorry you're dealing with this. You guys are in our prayers. I pray you can get some answers fast. I wish I could be there to help you guys. Hugs.

Kate said...

Pam, I still hope you can get her an MRI eventually because things like chiari malformation, type 1 (which can cause the symptoms Chloee is having) do not typically show up on CT scans. Also, vascular problems in the head would not be picked up by CT scan, either.

I'm not trying to worry you more than you already are; I just don't want anyone to miss what could be going on with Chloee simply because they are assuming the CT scan ruled out everything in the brain.

Biggest (((( hugs )))) to you all!

Ann said...

Prayers and hugs!

Michelle said...

Oh, sweet Chloee! Indeed - I am very pleased that they finally were able to complete a scan. And, yes Pam, you have ruled out some big, bad things. I will keep your little sweetie in all of my prayers. You call if you need anything at all. I may just hop on a flight to Utah! Love yah!

Chris said...

Yes, thankfully you have ruled out some scary things. We'll pray that she is not facing Shy-Drager syndrome.

I'm thankful to hear that you have doctors who are now helping you get Chloee the medical care (testing) she needs rather than worrying about how the bills are going to be paid.

Hoping you get some definitive answers soon.

Janel said...

in my prayers and positive thoughts everyday!!!!

Shannon @ Gabi's World said...

How frightening Pam! Hugs to you and your family and I will keep you all in my prayers. I love the idea about starting or ending the post with something positive BTW!

Lily said...

I'm glad you got her in and the doctor made it clear that no money would be needed up front for the next wave of tests. My thoughts and pryaer are with Chloee and the rest of your family!

Christina said...

I have been thinking of and praying for your family and especially Chloee lately. I hope you get more answers soon. I am glad the ER doc helped out on the do not harass about money front.

Hugs & Prayers,
Heart Momma to Jacob

Ally in Wonderland said...

I have Orthostatic Hypotension! Lemmie tell you, its FUN!! (just kidding, its really not) The good news about that is, lots and lots of foods are high in sodium and salt can be added to everything, so its a really easy fix. Tell her good luck and swipe plenty of salt packs from McDonalds to keep in her pockets!

Michelle said...

I'm so sorry to hear all that Chloee is going through! She will definitely be in my prayers that it isn't #2! I hope it doesn't take too long for you to get some definitive answers!

little.birdy said...

Sending up a prayer that you figure out what's going on and that it's easily remedied!

Shari said...

Your family has been on my mind all week last week and into this week. I am glad you were able to get some help in the ER. Now, I am praying that neurology can help and that little Chloee can get some relief from her suffering.

Melissa @ Banana Migraine said...

Oh my Pam! So sorry that you have this additional worry thrown into the mix. I'm hoping it's the first one, and sweet Chloee is in my thoughts (as are all of you).

DTanner said...

Good luck Chloe! We wish you all the best.

Imsavimsa said...

I'm sorry that Chloee is not well, and hope they find out soon what's bothering her. Have they checked her kidneys? I've read that high blood pressure is related to kidney function.