Raising A Child With A Rare Illness.
What do you do when your child has a rare illness that no one has ever heard of? You write a buzzfeed article, of course.
I will warn you. I'm no professional writer, but I want to share Emma's story anyway. Here we go...
This month is the one year anniversary of the day we were finally told my daughter had a rare illness known as Cyclic Vomiting Syndrome. This disorder is not only rare, but it is also incurable. There is very little known about the illness and unless you know someone who has it, you have probably never heard of it. That's where I come in.
Hi there. This is my daughter Emma. (Pictured above)
Emma was just five years old when she was diagnosed with Cyclic Vomiting Syndrome. As you may have imagined, this illness is about as glamorous as anything with the word "vomiting" in the title could be.
Getting to where we are today, one year later, was not easy. It took a lot of fighting on our part. There are certain things in life that you never expect to have to do, like yell at a pediatrician for instance, because she is once again ignoring your concerns and questions. Fighting just to get a referral to a Gastroenterologist was only the tip of the iceberg. I learned very quickly, that when it comes to dealing with a sick child, you cannot be afraid to get a little animated. After all, I knew I had to be her advocate. That's just what mothers do.
By the time we had met the pediatrician, Emma had already been vomiting for nearly a year without answers. We had only begun tracking them, because I realized that it seemed like they occurred at the same time every month. When looking back further into her past, we realized that she had in fact been throwing up since birth. We were always given an answer that seemed like it fit, so we never even bothered to question the fact that she had constantly and consistently been sick since she was born.
The day she was born, she threw up so forcefully that it came out of her mouth and nose simultaneously. We were assured by the nurses that she was just sensitive to the formula she was given. She tried a number of different formulas, each with the same result.
By ten days old, she had her first Upper G.I. Series where we were told she simply had a bad case of G.E.R.D. We spent the entire first year of her life watching her sleep in swings, at the urging of her pediatrician, and crushing up prescription prevacid pills into her bottles.
By age three, the vomiting continued. This time we were sent to an allergist who informed us that while she did not show any allergies, her symptoms sounded like a dairy sensitivity. We were instructed to keep her on Almond Milk indefinitely, as that was likely the culprit. All I kept thinking about was how grateful I was it was such an easy fix.
By 2013, at age four, the vomiting still continued, but it was now coupled with stomach pains. My already thin for her age child went from snacking often, to barely eating, to not eating at all. The doctors assured us she was likely suffering from constipation and that laxatives would cure the problem. After a little trial and error, we discovered that not only did laxatives not help, but they exacerbated her stomach pains.
I was at a total loss.
I had spent the past four years watching my daughter refusing to eat, complaining of stomach pains, being seen by doctor after doctor all of whom insisted the problem was something so simple, and yet it never was.
Just before Emma turned five years old, she was in the Emergency Room for the first time ever as a result of her vomiting. It had become so forceful that she was no longer able to control it. The cycles sometimes lasted for upwards of five days. I promise you, the last thing any parent wants to see, is their child throwing up for five straight days. She would lose consciousness in between each retching, only to be violently awoken by her own body forcing her to once again release stomach bile from her mouth. Sometimes there was so little in her stomach all we could see were streaks of blood in what appeared to be watery vomit. She would cry on the floor as I held her and she would scream, "I wish this didn't keep happening to me." It was in that moment that I realized I could no longer trust the doctors to find the answers for her. I knew from there on out, that job was going to be mine alone.
We rushed her to the Emergency Room where she was given her first dose of Zofran through an IV to stop the vomiting. After a few hours of rehydrating, she was sent back home. Had that been our only Emergency Room visit, we may have settled for never knowing what was going on, as long as it stopped. Sadly, she was rushed to the Emergency Room again less than a month later. She had been vomiting at this point for significantly less time than before and yet it was somehow stronger now. The pain was more intense, the vomiting louder, harder, and more excruciating. Rather than wait, we took her in as fast as we could. This time, her cycle was so intense that she had already become severely dehydrated. They attempted to place an IV on five separate occasions. Each time they found a vein in her arm that looked usable, it would collapse. After the fifth try they decided that the only way my little frail five year old would be able to stop vomiting is if I allowed them to place the IV through the top of her foot. I agreed and held her hands as two nurses pinned her down in order to place the IV. I cried as she screamed in pain, attempting not to over excite herself again to the point of vomiting. I cried as her eyes rolled back into her head each and every time she could no longer take being awake and simply passed out. I cried, because we had been here less than a month before and I had been trying to advocate for her, but no one would listen. Would they listen now?
We finally did get her into see that Pediatric Gastroenterologist in June of 2014, which was when she was diagnosed officially. We started her on a preventative medication which was helpful for a number of months. Other problems popped up, as they tend to do with Cyclic Vomiting Syndrome, but I have made it a point to advocate for her to the best of my ability through it all. I no longer back down and I always stand my ground when it comes to doing what's right for Emma. Not listening to my instincts in the first place landed us in the hospital on several occasions.
While I wish I could say my advocating made everything easier, it didn't. I have made it my mission in life to advocate for my child and other children who suffer from Cyclic Vomiting Syndrome. I have made it my job personally to ensure that if we don't have to end up in a hospital bed somewhere, we won't. Of course, you can't just will away an incurable and rare illness regardless of how much you'd like to. Sometimes, things still happen that we can't control.
Just this past month, Emma wound up spending five days in the hospital with an NG tube shoved down her nose into her stomach and morphine running non-stop for the severe pain she was in. As nurses passed in and out of our hospital room, my child unconscious and hooked up to machines at every turn, they all had the same exact question for me.
"What is Cyclic Vomiting Syndrome?"
I was floored. How could these people be nurses, in a specialty hospital no less, and have never heard of this illness, EMMA'S ILLNESS? My mind raced and I decided that it was time to educate the public on this sickness. After all, how can we expect to help children like Emma, if we have no idea what's wrong with them in the first place?
I quickly put together a binder that I now carry with me everywhere. It's in my car, it comes to appointments, and yes, even during Emergency Room visits, I simply hand them the binder and tell them to read up. I'm sure I am no one’s favorite hospital visitor, but it is up to me to ensure that the health care professionals caring for my daughter understand what the illness is that they are dealing with.
And that is why I came here to write this article.
Cyclic Vomiting Syndrome awareness is not something you hear about often. You have awareness ribbons for things like Diabetes and Autism, but ask around about what Cyclic Vomiting Syndrome is and I bet you will be met with blank stares. So, just in case you feel like joining me in my quest to educate the world, here are a few important things you should know.
1. Cyclic Vomiting Syndrome is so rare that it is estimated to affect just 3 in every 100,000 school aged children.
2. Cyclic Vomiting Syndrome is hard to diagnose. The best way to ensure an accurate diagnosis is by keeping a log of all the times your child gets sick and what the symptoms are that go along with that.
3. Cyclic Vomiting Syndrome is rare, incurable, and can affect a person for decades.
4. Cyclic Vomiting Syndrome is misdiagnosed so often, it can take anywhere from 3-8 years for a person to know they have it and be properly treated.
5.Cyclic Vomiting Syndrome is not just a "stomach ache." It has been verified that there are neurological links, as well as gastrointestinal links that go along with this illness. It is now defined as a "brain-gut" disorder.
6. Not only is there no cure for Cyclic Vomiting Syndrome, there are also no explanations as to what causes it.
7. The average age of onset is five years old.
8. Adults can also have Cyclic Vomiting Syndrome and the symptoms do differ.
9. It usually takes a hospitalization for anyone with Cyclic Vomiting Syndrome to come out of a severe episode of emesis (vomiting). Sometimes, if a person with Cyclic Vomiting Syndrome is aware of their own triggers, they are able to abort an episode with preventative medications like Zofran.
10. In 2012, Cyclic Vomiting Syndrome was #9 on Discover's Top 10 Rare Diseases List.
We do what we can each and every day to advocate for our child and help her through these scary times. We even joined online support groups and communities only to find that there are thousands of adults, children, and teenagers alike right here in the United States who suffer from this illness.
The one thing they all have in common? They wish more people knew about their illness.
Please visit www.cvsaonline.org for more information about Cyclic Vomiting Syndrome or to donate to C.V.S. Research.
You can also check out Emma's story at www.facebook.com/prayersforej
Thank you for your support. Together we can raise awareness and find answers!!
For the TL:DR Version, watch Emma's Story HERE!
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