Hudson's Story

People often ask me how Hudson is doing. It's a really hard question to answer accurately, so usually I just say he's doing ok. I thought I'd post Hudson's story so everyone can have a better idea of what's going on with him.

Hudson is our third child, born full term after a completely uneventful pregnancy. Right away Jake and I knew something wasn't quite right. He had a very poor, almost nonexistent, sucking reflex. He cried all the time. The nurses in the hospital nursery said they had to pass him around because whenever they set him down he would just wail.

At home, things didn't really get better. He cried and cried, and wouldn't eat. He began to have strange movements where he would stiffen up, arch his back, and twist his head around, especially during eating. We were told he had colic...wait it out. We changed his formula, tried every different bottle, nothing helped.

Finally I did what I've come to do countless times since, I got online. I found that the stiffening movements he was doing could possibly be from reflux or seizures. Off I went to the pediatrician to ask for a referral to a specialist.

The pedi GI took one look at him and said he was admitting him for possible seizure activity. Hudson was 2 months old. After a week at the hospital, we left with a diagnosis of reflux, specifically Sandifer's Syndrome, which is a symptom of really bad reflux. We were relieved, it wasn't seizures, we got some Prevacid and thought everything was now going to be normal.

Prevacid was a miracle! He stopped crying! He stopped arching! He began eating more! Then at 4 months old Hudson developed an awful cough and slowly stopped eating altogether. Back to the GI, where he took one look at him and admitted him. After about a week stay, and lots of tests, we learned Hudson had an aspiration pneumonia, a Pseudomonas infection in his lungs (which is a really nasty bug and hard to get rid of), an abnormal brain MRI, and 2 holes in his heart. We left with a feeding tube down Hudson's nose because he still wasn't eating, and so many unanswered questions. I remember crying as we left because it felt like all we had accomplished that stay was uncovering more problems, and no one could give us any answers.

A month later Hudson had surgery to place a G-tube, which is a feeding tube in his stomach, which he still has today. As much as we hated it, it was the best thing we could have done, because we can keep up his feeding and hydration issues at home, it's saved us many hospital admissions.

Over the course of the next year and a half Hudson was sick...all the time! I quit working to stay home with him because I was never there anyway, I was always at doctor appointments. He caught everything, RSV, Salmonella, pneumonias, you name it he probably had it. It took him forever to get over being sick when he caught something. He'd finally get better and then get sick again 2 days later.

During this time we were seeing so many doctors, we went to several hospitals because we would run through the doctors at one hospital and they'd pass us along because no one knew what was really wrong with him. We were seeing GI, cardiology, neurology, epileptology, pulmonology, immunology, genetics, therapists because Hudson was very developmentally delayed...so many specialties, yet every doctor was just treating individual symptoms and not looking at the bigger picture. Why did Hudson have so many issues in so many different systems? No one could answer this for us.

So, once again, I turned to the Internet for answers. I came across a website that would change our lives forever. I read about kids with a disorder I'd never heard of before, Mitochondrial Disease. With a feeling of both dread and relief, I knew we'd found our answer. Hudson sounded like these kids! He had so many of the same symptoms. After being told for so long that Hudson didn't fit in any "boxes", he fit in this one.

There are very few doctors around the country who specialize in this disease. Luckily, there's one right in Houston at Children's Memorial Hermann. And she is amazing! After lots of fighting with insurance, we got to go see her. She felt he had "mito", so he had a muscle biopsy done, which is a test for Mitochondrial Disease. Eight weeks later, on March 9, 2010, we got our answer...Hudson has Mitochondrial Disease Complex I. It was a horrible yet relieving day for us. It took almost exactly 3 years to get Hudson diagnosed...I absolutely couldn't imagine not ever knowing what was really wrong, yet it was an answer that was devastating for us.

Mito means different things for different people, no two mito patients are the same. For this reason his doctor can't give us a definitive prognosis. What we do know is that the disease is progressive, and the therapies we use are aimed at slowing the progression down. Having mito means your body doesn't make enough energy to run the organs and systems correctly. Which systems, and the degree to which they're affected, can be different in each mito patient. For Hudson, his GI system is the most involved, along with the brain, but he also has dysfunction in his autonomic system(he can't regulate his temperature for instance), his heart, his immune system, his muscles. Most recently we have seen progression in his GI system. He isn't absorbing nutrients and vitamins in his intestines correctly, so this is leading to dehydration and blood clotting problems. He's also having periods where his GI system just doesn't work for a few days at a time, nothing moves, so we're trying to figure out the best way to treat that.

I know this was extremely long, and if you've made it this far I'm impressed! I hope
this gives you a better idea of what Mitochondrial Disease is and what it means for Hudson.