Friday, November 16, 2012

Greys Anatomy:Cyclical Vomiting Syndrome (CVS)

My take after just watching Greys Anatomy: I'm CRUSHED and trying not to beat myself up over this. I'm going to try to make this into a lesson for others.... Ryder started throwing up May 3rd--continuously everyday a dozen times. May 2nd he had his first lumbar puncture. I thought it was associated to that. He would hold his head and I tried telling EVERY doctor he was having a headache. It continued for months until he passed away and he continued to hold his head. My baby was having migranes just as I suspected, but NO DOCTOR believed me or followed through!! It could have been a different outcome if he had meds to control his migranes. Dr. N suggested caffine the 1st time in the hospital and it worked---but that was only 1 dose and nothing was done after that :( Lessons Mito Mamas--1. TRUST & FOLLOW YOUR INSTINCTS`ALWAYS-you have nothing to lose by trusting your gut! 2. DO NOT have invasive procedures done--avoid them at all cost!! Don't put your kids under anesthesia if possible. It really affects the kids. Whole Genome sequencing will be available to ALL very soon (a blood test or swab!) Contact TGEN or read about it please!!
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2 comments:

  1. JennaNovember 16, 2012 at 10:13 AM

    I am sorry you are having to deal with "What ifs.." Those are the worst.
    Being in this place with a child who is still un-diagnosed it is hard to hear "don't do invasive procedures" I am saying this not to say that you are wrong at all, I am hoping you see it as comfort that any parent would make those decisions.
    It is hard to live in the un-diagnosed world, there is so much fear. You don't know what you are fighting and you hope that if you at least knew what the enemy is you would have a chance to fight it.
    When I was going through infertility and pregnancy loss TV shows at times put me in big funks. When I saw someone on TV lose a baby and handle it differently than I did, I would be crushed. I would be upset for days. I hope and pray that isn't where you are... I pray that you are able to get past what you saw and you are able to know that you made the best possible decisions you could have made at that time.

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    1. Denise HauerNovember 16, 2012 at 1:33 PM

      Thanks Jenna! I remember battling the un-known for years and I felt exactly the same. I was just upset last night. I am always fighting my mind not to wander to the what ifs, but TGEN is writing a story on Ryder and we are helping them understand why solving the unknowns are so important. It just has made me think more about it lately, bring up all the emotions along with it. I really support the whole Geneome Sequencing that they are doing. It was a simple blood test (but complex analizing) that diagnosied Ryder with Alper's in the long run. Ryder was one of the first 5 children to have this done (costing over $430,000!) It is down to $5000 now and soon will be about $1000. We are hoping insurance will cover it soon and it will be a common test doctors can order. If this becomes the case--the invasive procedures will not need to be done as a diagnostic purposes. I hope you find answers!!!! Thanks for the comment :)

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