Michael Warechowski IV

Updates on our sweet Michael

on September 13, 2012

After a very short trip up to Pittsburgh, we are all rested and back on our schedules. I’m happy to be writing a positive update for once.

First of all, let me just say a big THANK YOU to everyone out there. I wish you all could know and understand how important and special your support for our family is. We simply cannot believe the outpouring of support, prayers, kind words and donations that have come our way since we began this journey. As some of you may know, we were recently featured on a local news station. If you’d like to watch the story, please click HERE. Also, while we out of town visiting the team in Pittsburgh, a local Chic-fil-A restaurant did a fundraiser for us. I wish we could have been there to see how amazingly packed the restaurant was. Friends, family, coworkers and strangers all eating a meal to support us. Wow. It’s simply mind blowing.
When you think about everything we went to to get up to Pittsburgh just for a 4 hour visit with the team up there, you may wonder why we couldn’t just stay here in GA and get the same help. I wonder that myself but I am confident that no one here could have helped us the way Beth and Dr. Kaufman did this past Wednesday. After looking at Michael and doing some standard testing, they figured out that Michael has PAID Syndrome (PAIDs). I had never heard of this before – never heard any doctors or other MLD parents even mention it.   PAIDs stands for Paroxysmal Autonomic Instability with Dystonia.. Basically, his autonomic nervous system is going haywire. Random episodes of spastic breathing, high blood pressure,pupil dilation (causing sensativity to light), body temp increase, gagging & retching, muscle spasms, etc. All the “automatic” things the body does are basically all going crazy at once. When he explained it to us it made perfect sense. Thats why despite increasing his Baclofen and Neurontin, he was getting no relief. PAIDs is very common but highly under-diagnosed in people with brain injury/disease. They are starting him on a new med and hopefully we’ll see a vast improvement in about a week. They are starting him on a very low dose so if he’s not better in a week, we’ll do a gradual increase.
So now we just sit back and wait – hope this is the answer and that Michael can be comfortable and happy again.

9 responses to “

  1. Debbie says:

    I have looked back at your journal numerous times today waiting for the update of your trip. This news has TRULY just made my day! There hasn’t been a minute since I have heard of your family’s story that you have left my thoughts. I pray God continues to give you the amazing strength you have shown. One day I hope to meet that beautiful son of yours!

  2. Kelly says:

    So glad you got some positive news!!! I hope your son finds some relief with the new medicine. I have not stopped thinking about your sweet family since I saw the news story last night. I am praying for you all! And spreading the word about your story! May God comfort and bless you.

  3. Shon says:

    Thank the Lord for something positive! I pray your sweet angel finds some relief. I just saw your story yesterday and I have been crying and praying for your family ever since. I will continue to keep Michael in my prayers….I pray for his comfort and peace!

  4. Baylee Robertson says:

    So, so happy to hear that Michael will have some relief and hopefully be able to be more like himself again! That will be wonderful for you all. Continuing to lift your family up in prayer!

  5. Natasha Jones says:

    We r all following. Thank God! Who knows what the future will bring! Hang in there. Many prayers coming your way.

  6. Bobbi Cher McLure says:

    We are so thrilled that you were able to come home from the doctor with some answers and possible solutions for Michael’s relief. When the big miracles don’t come, we still pray for them and are grateful to hear of the little ones you get. We thank God that you got some positive news and hope the changes you will make will bring comfort for all of you.

  7. Kimberlie pekez says:

    Yay! Hope! I pray for Michael to have comfort and many pain free days ahead. I pray for you several times a day. Thank you for sharing your story with me

  8. Teryn says:

    Katie and Mike, We are so happy to hear that you found some answers in Pittsburg! We will be praying the meds help Michael. Our hearts are with you all.
    Butterfly hugs!

  9. Sarah Walstead says:

    I’m praying for your family. My daughter suffers from dystonia (she has iron accumulation in her brain, and has been tested for many diseases, but we have no definitive diagnosis) so I can relate to your family’s struggles with caring for a child with a rare disease. You’re not alone! I hope that the new meds bring Michael (and your family) comfort and relief. You have probably explored all of your GA options as far as physicians are concerned, but my daughter sees Frank Berenson at Panda Neurology and we’ve been very happy with him, and my daughter loves going to see him. Best of luck to you and your family… you’re in my thoughts!

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