Archive for the ‘dysautonomia’ Tag

Wandering   1 comment

So, I left you all Jess wondering what happened next, right? We had no answers other than the fact that my daughter was overly dramatic and depressed and generally making all of this stuff up so that more people would pay attention to her. Whew.

While I did internet searches on horrible diseases, and took her to a chiropractor, a woman, a dance mom, emailed me to ask how Fawn was doing. You see, she was an OT and had watched her fall to the floor like a rag doll at the dance studio and knew something was really wrong. When she heard the above “answer,” she emailed a children’s hospital and a pediatric specialist to get their opinions. These were both out of state and completely unknown to me. And what, pray tell, did these strangers from two different states have to say? Well, they said that they had each had a patient with similar symptoms and they were eventually diagnosed with POTS. I had a diagnosis within two days of this dance mom emailing me, now I just needed to have some doctors agree with me!

 

Did I mention how awesome our pediatrician is? No, really, she is. I called ten minutes before the office closed and left a message. She called me 15 minutes after the office closed and said something along the lines of “I just looked this up on the internet, I think we have a diagnosis! I am going to make some calls tomorrow to see if I can find a doctor who can help.” Really.

 

Now at this point I have to say something else. I don’t believe in accidents and stunning coincidences. I believe this was GOD. He caused a mom who didn’t know me well to care and to reach out and to find some answers. And a doctor to believe me. And the next day? Our pediatrician made two phone calls, and the second one was a doctor who not only knew about POTS, but “collected” patients. And so, next evening (when she was not actually working at the office, but working for us) she called to tell me that she had an appointment and some interim instructions, and that this doctor also felt like POTS was the answer.

Posted January 9, 2011 by comomma in family, Uncategorized

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Broken   1 comment

To give a little background, in November of 2009 Fawn was very, very active. She was dancing competitively (placed in the top third at the regional competition), practicing at home daily, going for hikes, walking, running, and generally being a normal kid. A normal, very busy kid. She was 11. When 2010 rolled around, all seemed normal until about February.

Fawn had a cold and had been feeling awful, but OTC medications seemed to help and she was getting over it. Then she started having problems in the mornings – shakes, nausea, cold sweats. Food helped. Then she was having problems at dance class. Her legs felt like lead, she was out of breath, so dizzy, so nauseous. All of those things rolled together sounded like blood sugar problems. So, with the help of our pediatrician, we altered her diet. More food, more often. She ate all of the time. I personally thought the plan was excellent so I snacked along with her. To help her of course.

I got lots of advice (moms, they are so helpful!), good snack ideas for more calories/carbs/proteins. This time, however, it wasn’t helping. She was getting more of her symptoms, not less. So the blood tests began. She became well-known at the lab. Every single one of those tests were normal, and yes, they tested for almost everything. The pediatrician ordered some duplicates to make sure.

What was she like right now? I’m trying to remember. She was active, but slower. She played, but she sat a lot. She’d run, and then rest. She competed in June (placed 5th!), but I put a lot of makeup on her to make her look the right color. Does that sound awful to you? I put bronzer on and blush and coverup for the dark circles under her eyes. Her outfit hung on her strangely, since she had lost some weight. Everyone told her how good she looked! She just smiled and whispered to me that people must not have been able to see the makeup.

And then. And then. The STOMACH PAINS. Now, for those of you who don’t know, if you are an adolescent girl with mysterious symptoms and STOMACH PAINS, that does not point doctors toward chronic illness, it points them to chronic depression/drama/showboating. Did you catch the nickname I picked for my daughter? Let’s just say she is the opposite of drama. I am not very confrontational, I really hate it, but when, coupled with negative tests and vague symptoms, the pediatric gastroenterologist brought forth his idiotic brilliant diagnosis I was less than enthused. I might have, even, expressed it a little bit. And, when she had an actual diagnosis several months later, I *might* have called his office to let him know. In the interest of education, of course. Doctors are always learning, right?

Bless our pediatrician, I mean it. She heard me out when I said I didn’t believe the other doctor. I said he was wrong, and she listened. We had no answers, negative tests and it was the end of June and there wasn’t anywhere to go. I must have plugged her symptoms into dozens of medical websites, done web searches, the problem, it seems, is that vague symptoms are just that, vague. They apply to hundreds of bizarre, frightening, and deadly diseases. I wanted an answer, desperately wanted an answer, but I didn’t want most of those answers.

Posted January 5, 2011 by comomma in family

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Two things (maybe three)   Leave a comment

First, my husband said that my title “Spoons” was unnecessarily cryptic. I was referring to this.

 

Second, I have decided for my sanity, to nickname my girls. That way, I can refer to them more specifically. The nicknames are kid-approved and are (drum roll, please, my brilliance is underwhelming):

Fawn: 12, chronically ill with dysautonomia. Quiet, caring and a peacemaker, she is always ready to beat you play a game with you.

Robin: 10, busy and always moving, sensitive and caring, she’ll care for your child or nurse you when you are sick.

Chipmunk: 8, loud and hates to be ignored, she loves to do things as quickly as possible and loves to rush to help you.

 

Third, for posterity and my own sanity (which is questionable, I admit), I am going to chronicle Fawn’s story. I am working on it at the moment. I want to make sure I have it right, so that my girls can read it and remember, because, SOMEDAY, this will be a memory. I have to hope.

Posted January 5, 2011 by comomma in family, Uncategorized

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If I were truthful   1 comment

If I was brave enough to overwhelm people with the truth, if I was courageous enough to be (forgive me, I’m going to quote Christians) “real,” I would answer the question of how we are doing.

The truth is, my daughter rarely sleeps anymore. Her head hurts too much to let her. We’ve helped her maintain her weight, although the doctors keep harping on how skeletal she is. Last night she cried, and I cried with her, because I asked her what she wants to be when she grows up and she said she didn’t know, because she doesn’t know if she’ll be able to do anything, even college. Today her eyes are accentuated by the bruised coloring underneath them. It is getting worse and so, again, I am leaving messages for doctors.

I would tell you that she doesn’t want to do any appointments for awhile. I can’t say that I blame her, but it doesn’t stop me from wishing I could take her somewhere that she could get a solution, instead of another thing to try and hope.

If I were truthful, I would probably cry while I told you all of these things. I would look away, because I can’t stand crying in front of people and I would crumble if you touched me. But what will I really say? I’ll tell you we are the same, we are fine.

Posted January 4, 2011 by comomma in Uncategorized

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Spoons   1 comment

I have already broken one of my halfhearted resolutions. I cried for the third day in a row. Life is hard. And it isn’t fair. Not even a little bit.

February will be the one year anniversary of the downward spiral of my daughter. She isn’t dying. Her condition isn’t life threatening. I feel like I need to apologize, we are fortunate. We get to keep her (as far as anyone can) for now. Knowing all of that, life is still hard for her. Standing, walking, eating, sleeping, they were all easy for her at one time. Now they are WORK. How do you sleep when you always have a migraine? How do you eat when you are always nauseous and in pain? How do you walk when you have about two minutes before you lose your vision and hope you can sit down quickly before you fall?

When I look in my girl’s eyes, I want to tell her to hope, but instead I pray for strength. Courage. The ability to keep singing in the crap (or is that storm?).

How do we know if she is part of the 80% or the unfortunate 20%?

Posted January 4, 2011 by comomma in Uncategorized

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