Prince Snow Farm

3.29.2014

A Lesson

 Those of you who have been hanging out with me for a while know a bit about cyclic vomiting syndrome.

Our 10 year old, C, was diagnosed with this migraine related disorder at age 3.

A bit of background:  CVS is a  disorder that still perplexes the medical world. It is thought to be migraine related through the maternal line (although ours is VERY strong on the paternal side).  It is a disorder that can rear its ugly head with severe bouts of nausea, stomach pain, vomiting and vertigo.  There are many known triggers….chocolate, cheese, and other foods; stress….good or bad ( a birthday, or a test for example); an illness, such as a cold, a virus, or the flu; and as is our case, TIME.  



Our daughter is in an every 80 some odd day pattern. She made it to 83 days the last time.
After waking to severe vertigo this morning, we know she will get an episode tonight. We will be ready…with bowl, hair elastic, water bottle and roll of paper towels. I will sleep with C and be there through the severe gut pains, the over the top nausea, and the vomiting so severe it makes a mother wish she could trade places with this little person who does not deserve such trauma. The vomiting will come every 15 minutes all night, and the spell will be broken at daylight. After that, a very tired little girl will lay low for the day. Unfortunately, vertigo kicks in, and even a slight movement of the head  can cause blinding vertigo. Last episode this lasted for a week, causing more nausea and vomiting; however, for C that is very unusual. She usually misses a day or two of school….but this time she also had the flu, so it made the episode much more difficult. She also missed a week of school.



Sound odd? Even unreal? Believe me, we know. We live it. She lives it. And my purpose in writing is to let others out there know that we understand! 

There are good doctors who specialize in this disorder. Wisconsin and Boston have amazing doctors ready to help at a moments notice. Unfortunately, our trip to Boston was useless. It's not good when you feel like you know more than the doctor. We have been given a new name at Mass General, a Dr. Russell, and we will look into meeting with him.  Dr. B.U.K. Li at The Medical College of Wisconsin is an expert on this disorder. He is fighting to find the causes and to develop treatments.


There is also an organization called CVSA that has been on the front line with treatment ideas, medical resources, lists of supports groups and medical professionals. They also run a yearly conference with experts from around the globe.





In between episodes, C is amazingly well. She wore a hip brace, had tortocollis, a helmet, and has Celiac Disease. Really? Because when I see her I see joy and a love of life. I see a little girl who cannot wait to have a garden this summer….who LOVES to sing….who things 4 square should be an Olympic event, and who is kind and helpful to others.

SO PLEASE DO C AND I A FAVOR.
TELL ONE PERSON ABOUT CYCLIC VOMITING SYNDROME.

WE ARE FIGHTING TO FIND A CURE…OR AT LEAST A SUCCESSFUL TREATMENT.

XO

30 comments:

  1. I've never heard of this. Writing this post will get the word out about this disease. Is this something that could be outgrown? I just feel so badly for this little one. My prayers for your family that they do find a cure.
    Balisha

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    1. Some children outgrow, some develop regular migraines….we will pray for the best. Thanks for your kind words and compassion.

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  2. Because I've been following you for a while now I'm aware of your little girls illness. As before, this post moved me to tears. I can't imagine your maternal pain. I will share your FB post about this awful disease, hope & pray for a cure.

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    1. Thanks so much for helping to spread the word, and for always being so caring and supportive.

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  3. So sorry you both have to go through this. I suffer from migraines, a gift from my dad, and my mom has episodes of vertigo, but I can't even imagine going through what C does. You must be so proud to have such a strong daughter. Lots of love and prayers,
    Christy
    PS. How's Stormy?

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    1. She is strong, you are right! I am blessed and proud of my children. Stormy is holding steady! Thanks for checking on us and for your kindness!

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  4. You are all going through a lot and then little Stormy has issues too. At least the disease has a cycle that you can somewhat predict.

    My thoughts will be with all of you.

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    1. Aw thanks! Somehow we always get through and move on! Yes, the cycle for C is predictable, so we are lucky! Appreciate your thoughts and concern.

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  5. Monica, I had never heard of it until a while back when you briefly spoke about it in a post. I can't imagine how one of these episodes must leave her...dehydrated and weak...but by looking at her, her radiant spirit just shines through the body's difficulties. I so hope that there will be a cure, and in the meantime, that you new doctor will be a great source for prevention of episodes. And may C enjoy her garden as soon as spring makes its way to you! Anita

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    1. Oh Anita, I hope for a cure as well! And yes, maybe the new dr. will offer help. Before we know it she will be playing in the summer sunshine! Thanks for your sweet words and visit.

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  6. Poor baby. Never heard of it, but my kids all have migraines from their father's side of the family. You are such a good mother. Keep doctor shopping; you'll find one who can help.

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    1. It is not very well known Donna. I appreciate your kind words. She is my strength. We will keep looking!

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  7. I am astounded by the severity of this disease Monica, which I've never heard of. My thoughts are with you as your daughter travels a journey of uncertainty. May I ask, has she been to see a naturopath practitioner? I have great respect for the ND I went to see after our GP and specialists couldn't diagnose an issue I was having. The answer? A build up of toxins in my body, you'd be surprised of the symptoms that can occur.
    I'll share your post with our daughter who is a nurse, she'll find it enlightening.

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    1. Yes Judith, it is harsh. C only gets for one to nights, while many children (and adults), with it get it often, and for days at a time, often ending up in the hospital. So in a way, we are blessed. I have thought about a naturopath; however, after looking in Massachusetts, it doesn't seem that we have many! Thanks for checking on us, I appreciate it!

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  8. Monica, thank you for your informative and touching post on this disease.
    My brother in law was actually recently diagnosed....there is so much to learn about it.
    Your daughter is so cute...her personality bubbles through on the pics...Kids are so inspiring aren't they? Prayers to her and you, as I am sure it can be very wearing to be the strong mommy you are.
    Lucy~

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    1. Thanks Lucy! Oh, I feel for your brother in law! He needs to find a supportive dr. And I hope his employer is supportive as well. Thanks for the sweet and kind words. C is inspiring to me daily! Your prayers are appreciated!

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  9. Your daughter is so beautiful. I love that beaming smile in the last photo. It must break your heart that she goes through this disease and the other problems she has had.

    My daughter wore a hip brace and had right sided torticollis . We were lucky to avoid the helmet, and at 8 months old she seems to have mostly outgrown it - although it has delayed her reaching some of those physical milestones.

    Sending best wishes to your daughter, yourself and your family.

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    1. Aw thanks Rowan. Her smile and personality are contagious! You totally get the torticollis/flat head thing! The helmet helped immensely. I cannot remember if her milestones were late. Both of our kids were early talkers…10-11 months and VERY late walkers, 15-16 months. Glad you stopped by. Thanks for your support.

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  10. I did tell someone, last week in fact. A friend's son would suffer from a vomiting migraine once a month as a child, and I told her I thought he may have CVS, and I told her she needed to look into it. I will continue to tell others, since unless you are aware of what is going on, you wouldn't go there, you know?

    Hugs to C., I always hate to see these post pop up since I know she has been in a tremendous amount of pain. :-(

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    1. Oh I am glad you are spreading the word Dina! I hope your friend finds someone who understands the syndrome. Your voice and others is just what we need! Thanks for sticking with us over the years!

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  11. Hi Monica.. how traumatic for your little girl and the whole family. I will tell my daughter about it.. I'm in Ohio visiting her right now. Thanks for spreading the word and I hope they find a cure soon.
    ((hugs)), Teresa :-)

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  12. Praying for your girl, (and you). What a horrible sickness!

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  13. Monica: You have written about this before and I have not forgotten. Your daughter is such a sweetie and so alive and charming and so, so lucky to have you for a Mom. I cannot imagine the pain of watching your child go through this, thinking it should be you instead. No child should suffer so much… I've read the other comments and you say that some do outgrow it. I guess there is no way of knowing? Best love to all of you, and hoping that, for now, this episode is over. And spring is on the way!
    ox Libby

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  14. Oh Monica...how hard. I can't imagine the pain you go through just watching your little girl go through all of this. She is certainly a tough girl...she gets it from her beautiful Mama. xo Jen

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  15. Dearest Monica! Hello there! I am always happy to see you come to visit me, and I want to thank you for your kind comments. May April's Promise of new life enchant you, bring healing to your home and family and much JOY! We are finally getting some sun and warmer temps! YAHOOO!

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  16. I have never heard of CVS and I'm a nurse I have two daughters and I can imagine how much you must be suffering when your lovely C has to pass through that. I send you my best wishes and I will tell everybody about this syndrome. It's necessary to find a solution. All my best wishes.
    Marga (ohqueperro)

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  17. Hi Monica, this must be pretty hard on the whole family. I'm just stopping by to say how delightful your blog is. Thanks so much for sharing. I have recently found your blog and am now following you, and will visit often. Please stop by my blog and perhaps you would like to follow me also. Have a wonderful day. Hugs, Chris
    http://chelencarter-retiredandlovingit.blogspot.ca/

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  18. I can't begin to tell you how many times I have read this. It moves me every time. No child, or adult for that matter, should have to go through this. My heart goes out to each of you as this illness touches everyone.

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  19. I just found your blog and I wanted to tell you how much this post moved me. My heart goes out to your little girl and all that she's endured during her short life. God bless you all. As a mom, I can't imagine how you feel having to see your daughter go thru this. I'm hoping this is something that she'll outgrow. Many blessings to you and your family. xoxo

    ~ Wendy
    http://Crickleberrycottage.blogspot.com/

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  20. I was a pediatric nurse for 32 years and have never heard of this disease. I am so sorry your little darling is having to go through this. Thank goodness there is a foundation and people to support you. It is so very frustrating when you wait to see specialists and they don't know as much as you do.
    I will keep you both in my prayers. Your daughter is beautiful and so full of joy in her pictures.

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Thanks for chatting!

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