Rumination Syndrome

My son was recently diagnosed with a very rare condition called Rumination Syndrome. To help to define the perimeters of how rare this condition is, there is no known treatment plan for a child of his age. If he was 12, it wouldn't be that complicated, but 5? Nope, nada, nil.

This inspired a phone call to the Mayo Clinic. You know how many children under the age of 10 they have treated with this condition? One. That's right folks, one child. And that child was 9, not five. 

To explain, Rumination Syndrome is where your body involuntarily regurgitates (or vomits) up your food. You have no pain, nausea, or feelings of discomfort. Your food just refuses to stay in your stomach. The result of this is malnutrition. You are essentially starving because your body won't keep food in your stomach long enough to digest it. 

My son is underweight and under-size. He is considered to be the size of a very small four year old. The belief is that it's because he's not getting adequate nutrition. It doesn't matter how much we feed him, it won't stay down.

He was diagnosed three years ago with another rare gastrointestinal syndrome called Gastroparesis. He was the youngest child that his Pediatric GI had ever seen with it. He was 2. This was discovered after he spent a month vomiting every.single.thing that went into his mouth. By the time he was hospitalized (yes it took a month because there was no consistency with physicians and they all kept saying he had a stomach "bug"), he couldn't lift his head. He looked skeletal. My two year old child had lost nearly 10 pounds. 

For the past year, the medications for Gastroparesis stopped working. His condition was getting worse again. We went in for our routine six month check, and his doctor became convinced something else was going on. After a plethora of tests, we discovered he no longer has Gastroparesis (YAY!), but he does have Rumination Syndrome.

Let me put it to you how our doctor put it to us:

Doc: He's got Rumination Syndrome.

Me: Okay. What do we do about it?

Doc: Well... I have NO idea.

Me: Huh?

Doc: This is astoundingly uncommon to see it in a five year old. This is something that we see with adolescents. It's associated with Bulimia and severe anxiety.

Me: Okay...

Doc: I have nothing more I can do. But I'm going to do some research, contact some colleagues, as I'm sure you're going to do as well. Lets communicate and see what we can come up with. 

Me: You've got it.

It's not very often that your specialist doctor is stumped!

Today I spent three hours pouring over medical reference texts, websites, and on the phone with treatment programs. The other day I spent three hours on the phone with the Pediatric Gastroenterology head nurse at the Mayo Clinic. We are submitting a request to see if they will take on my son's case.

This child has endured uncommon experiences from  the beginning of his life. He's a triplet, wasn't supposed to survive in utero, wasn't "supposed" to survive after birth. He wasn't "supposed" to be smart. He wasn't "supposed" to walk. He has overcome so many medical situations. He knows far too much about IV's, hospitals, nurses, and doctors. But you know what? This kid is a rock star. He is smart, funny, charming. He is loving and silly. He loves Star Wars and Star Trek and cars. He has a deep love for all people (young and old, male and female). He befriends almost everyone he meets, even if they're putting in IV's (he HATES IVs). He loves Legos and his sisters. He shouts out "THANK YOU!!!!" to every police officer, firefighter, paramedic, security guard, MP, etc that he sees, whether or not they can hear him. He has a passionate love for all things Army and Marines. He has conquered a thousand odds.

So here's one more thing for this amazing kiddo to conquer. And conquer it I know he will.