Tuesday, July 21, 2009

Happy Birthday, Alyson Re-Post

Please read for some important health information.

(I want to re-post this entry. Sometimes I'm in a hurry so I don't take the time to read all the post, and this is sort of a long one. I just glance at the photos and on I go. But today, please know this is not just me showing pictures of my girl, it's important medical information that can save a life. So now, the rest of the story...)

Twenty-nine years ago today, we were living in San Antonio. We left Missouri to be "grown-ups", on our own, except it was hard for me because I missed my family so very much. While we were there our little Texan was born, Alyson Leigh. I remember thinking about names for the baby. At that time, sonograms were not the norm, so we didn't know the gender of the baby. I would look through the newspaper every Sunday in the society section and all the beautiful engagement pictures, weddings, graduations, all seemed to be about the elusive "Allison". Not wanting to TOTALLY follow the crowd, we chose "Alyson", a different spelling, but still the quintessential "society" name.

My favorite senior portfolio picture.
1997




Alyson and her cousin, Spencer, at her wedding, August 2003.



This photo above is one of my favorite random shots.
Sorry for the fuzziness. I had to enlarge it.

The picture below is with Grandpa, my dad,
at Mom and Dad's home here in Missouri.

It looks as if she has a little boo-boo on her head. She was very active.
Always jumping and bouncing and often ending up hurt, because of it.




An Easter photo in her little sailor dress.


This post has a little serious side to it, which I want to share because this affected Alyson's life and wellbeing, along with the rest of us. I"ll try to keep this as short as possible. PLEASE read the rest of this post, as it might save the life of someone you know or love.

Alyson was born 5 weeks early and weighed a little over 5 lbs. We took her home 2 days later, but she had problems feeding and keeping formula down. At one point after a bottle, she choked and turned blue. We called the paramedics, but she would not have made it had I not just washed out an old nasal syringe. I cleared her nose and throat, and she recovered her breathing. Because she was so early I didn't have her room finished, nor any baby items in place. I had had a really rough pregnancy, and I felt lousy most of the time, so God timed my one day of early preparation, when I found a box of some of Erin's baby things, washed them and put them away.
She vomited daily, and we took her over and over to the pediatrician, but they said, early babies sometimes had problems with their digestion, so it was dismissed.
Fast forward 26 years and many distressing times. Aly had many upsets in her life, and growing up complained frequently of digestive problems, nothing ever showing up at doctor's visit.
Three years ago another problem started. She had numerous skin rashes; problems with eczema on her hands and face, which at times looked as if she had been burned with an iron.
She had to quit a job because she felt so horrible all the time, but remained a "trooper", trusting God for healing. She saw doctor after doctor with tests, tests, and MORE tests. I started going with her to talk with them, hoping they would take this more seriously, and that maybe I could shed some light on some of her "history". So finally we got to an Endocrinologist who was baffled and ready to give up. By this point I was "mad, and I'm not going to take it anymore"!!! I was hurting for my baby, and I was darn well going to get the answer! Finally, an obscure test was done as a "last resort" sort of thing.


Praise the Lord, an answer.

Apparently "House" was the only doctor who knew the answer to this medical mystery, as we saw on TV last year. Alyson was diagnosed with a blood disorder called "Hemochromatosis", which is hereditary. (our older daughter, Erin, does not have it) This physically causes her not to be able to process iron in foods and supplements. She literally was being poisoned because of it, as the iron build up starts to corrode organs and tissues. This diagnosis answered so many of the questions concerning her health through the years.
Untreated, the prognosis is early death, usually in the patient's 40's or 50's. Undiagnosed, this condition causes illnesses that begin to cause doctors to tune them out, or just think they are hypochondriacs. This condition has only been known about since the early 90's. Until then, people would go through their lives miserable, sick, hurting, and not knowing why.
So don't give up on getting an answer to your medical and health needs, stick with it and pound on the doctor's door. And if a child has serious vomiting that lasts, look into this medical issue.
She now is much better, as she limits drastically her red meat, and takes vitamins without iron. Occasionally she needs to have blood drawn, which helps remove some of the iron. All in all, she's back at a job, feeling good, and loving her life.

Thanks for letting me share. I love my beautiful daughter and know she wants others to be aware of this condition for diagnosis and management.

BE RELENTLESS in getting the answers you need.
Debra

13 comments:

  1. Wow Debra...this post was so enlightening! She's so beautiful, I would have never guessed she had such a disease that gave her many trials. You are a trooper for sharing this in hopes of helping others. But most of all, I'm so glad she is living a wonderful life now and enjoying it, she most certainly deserves the weight being lifted off of her shoulders!!!
    everything vintage

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  2. WOW! That's fascinating! So glad she found the source of her illness and is able to do something about it!

    That senior picture is awesome. She is movie star beautiful. Happy birthday, Alyson! Twenty-nine must be the perfect age because I've noticed some women claim that number for quite a few years! ;-)

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  3. Happy Birthday to your daughter, she's just so beautiful! So glad you stuck with the doctors and getting the answers to this problem. Thanks for sharing, you never know who you'll touch with this story.

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  4. Happy Birthday to your beautiful Alyson. Hope she has a wonderful day -- even with the rain. You never know when something you post can really make a difference -- hope this one helps someone. I love House. Jan

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  5. Bless Alyson & you all ... I've walked in those shoes of Drs. throwing up their hands. Each time it was many years later found to be serious diseases & I was so sick I could barely crawl. It is always important to share medical issues as there may be that 'one' person that can grasp ahold of it in need. TY for sharing this. May Alyson have a fruitful & enjoyable life ... TTFN ~ Marydon

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  6. Debra...What a JOY to read you have found the answer...God is good, All the time.

    I'm thinking of you and praying for your girl. I sooo hope what you have shared will in turn help another. I KNOW it will!

    Love, Rebecca

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  7. Rebecca,(hope this isn't too long)
    Six years ago my husband and daughter were in a car accident (she was pregnant at the time..all are just fine) I say this because it was a blessing in disguise. My husband had been plagued with numerous blisters on his hands for months. And when the blisters "popped" it was like a burn and took weeks to heal. Not one doctor could give him an answer until the emergency doctor found an irregularity in his bloodwork...He had too much iron in his system. His liver was unable to process it. It also is passed through his family. His mother did have this, the name of the disease, however was different than Alyson's, and completely escapes me. At any rate their solution was blood letting...we opted not to do this, but rather control his red meat and iron intake. Happily he has not had a blister in over a year and feels terrific! Thanks for sharing your story..persistance does make a difference.

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  8. I am so glad she is feeling better now and that they finally have an answer. I also posted this year about my daughters finger and plan to repost in the Fall to bring my daughters medical problem to also maybe save a life by making people aware. Thanks for sharing this with me.
    Joyce

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  9. so happy your daughter is ok. Excellent story and lesson for us all. Thank you for showing.
    Karen

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  10. How wonderful to find an answer! And bravo to you for not giving up. So many are afraid to question the doctor and to push for answers. I'm glad there was a happy ending. Your daughter is a beautiful, young, lady!

    -c
    yapping cat

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  11. You make me proud to be a woman. We just won't let up with that "intuition" takes hold and tells us something just isn't right. Too bad doctors won't always listen to us. I'm glad y'all were able to find the answer and she is doing fine now. Your baby is a beautiful woman and I bet she looks just like you! Happy birthday to you both. (I celebrate with my kids...I WAS there after all!)
    Debbie
    P.S. My ex-brother-in-law was diagnosed several years ago with something similar to this. His skin actually turned a little rusty red color in places! That was the tip off for the doctor.

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  12. Thank you for sharing this story and for encouraging all of us to trust our instincts and to keep looking for the answers. There is nothing quite like a mother's love and knowing when it comes to pushing and advocating for answers. I am so happy to hear that your beautiful daughter is doing well.

    ~J~ @French-Kissed.com

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  13. Isn't it amazing that you had to get your answer from a TV doctor?! Praise the LORD you got one though.

    Hugs,
    Liz @ the Brambleberry Cottage
    http://thebrambleberrycottage.blogspot.com/

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