Where Hudson's Story Begins...

Hudson was born May 14, 2007, which was actually his due date!

There were no complications at birth, and he seemed to be a healthy baby boy. At 2 months of age he started projectile vomiting daily. He was treated for acid reflux, and it seemed to help. At 3 months I started getting concerned over the lack of head control and took him into his pediatrician. He recommended an evaluation at our local hospital. Hudson was evaluated by a team of doctors and therapists for over 4 hours. They all felt his lack of head control was due to the lack of tummy time, as he couldn't tolerate it due to the reflux. Hudson ate a bottle in front of the oral therapist and she said it was classic reflux symptoms. Hudson was also extremely irritable and cried constantly. He would calm in a sling that I would wear and he wanted in it all the time. I thought it was colic. After his 4 hour evaluation that was suppose to put my mind at ease (I always felt in my gut there was something more serious going on) it wasn't long before Hudson's crying jags would end in these weird crunches as his eyes would roll back. It scared me, my family thought it looked "stomach pain" related . I took him back to the hospital and they scheduled him for an EEG the next day. The EEG showed it all...Hudson was having seizures, a rare epileptic form called Infantile Spasms, our world as we knew it came to a crashing halt!

Hudson was diagnosed with Infantile Spasms at 4 months of age. IS is a type of epileptic seizure, the most catastrophic form of epilepsy.IS is typically a symptom of a greater cause. At diagnosis he had a MRI of the brain, complete blood work, and a Spinal tap, which all came back normal. In the hospital he was put on his first anti-seizure drug called ACTH. It was a steroid injected daily into his thigh. A very scary, very expensive drug. We took him home on this new drug after a week in the hospital, we began our new normal...seizures, drugs, therapists, doctors...our lives would never be the same.

Hudson's seizures remained constant on the ACTH and with all the horrific side effects we took him off and were on to the next drug. Vigabitrin (which we have many stories trying to get this drug, as it was not FDA approved) helped Hudson's seizures somewhat, but he stopped eating orally after a month on the drug. In December 2007 Hudson had Nissin Fundoplication surgery and G-tube placement. Seizures remained constant and in March of 2008 Hudson was admitted into a study through Seattle Children's, he was the last child to qualify and get in, and it was our chance to get a 4th set of neurology eyes on our son. On the study he was required to be off all meds except for Phenobarbital. They hooked him to a 24 hour EEG and we were told Hudson was having approximately 160 seizures in a 24 hour period! Hudson was on the study drug, Ganaxolone, for almost 1 year, and his seizures were anywhere from 60-100 a day. In February 2009 the study ended, as there was not enough seizure control for Infantile Spasms, and it was decided the drug would not be marketed for I.S. Hudson was weaned off Ganaxolone. 
We have also tried the Ketogenic Diet, which helped slightly, but seizures increased with increased vomiting due to the diet, he was weaned off after 6 months.

Being under neuro #4, we were suggested that if we wanted to know a possible cause for his seizures, a muscle biopsy was recommended to possibly diagnose Mitochondrial Disease. October 2008 Hudson had a muscle biopsy, and November 3, 2008 our world was rocked once again when we were told our son has mitochondrial disease. It was devastating news. At the same time everything made so much sense to us...the seizures, low muscle tone, gastro issues, swallowing and eating issues...all effects of this disease! Hudson has an enzyme deficiency in the electron transport chain in complexes 1,3, and 5. There are 5 complexes total.

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection 


I firmly believe God put us right where Hudson needed to be. Had Hudson not gotten into the study we would have never gotten under Neuro # 4's care, and I don't believe we would have ever been told about doing a muscle biopsy to detect this disease. Hudson's neurologist is 1 of a handful in the country that is researching pediatric mitochondrial disease,and is currently the only neurometabolic specialist in the country researching epilepsy in relation to mitochondrial disease, as well as trying to make Seattle the research center for this disease....praise God for putting Hudson right where he needed to be! 

Today we continue Hudson on several anti-epileptic drugs as well as a laundry list of vitamins and anti-oxidants to try and preserve the healthy mitochondria and avoid cellular death.

Hudson can not sit on his own, crawl, or even hold his head up very well. We have never heard a giggle, and his smiles faded as soon as the seizures began. He lost his tracking and eye contact. We have been told if he gains seizure control and they stop, he would start gaining milestones. Hudson's seizures have changed over time. Today he is having tonic spasms which are a quick, tight flexing and stiffening lasting a few seconds. It is ever changing, and it is very typical if seizures are not controlled they change and evolve into different types. Hudson also has myoclonic jerks.Today we see around 3-10 tonics, sprinkled with the myoclonics throughout the day. I have learned it is ever changing as long as we don't get rid of them.

We put our precious Hudson in Gods Hands and pray for His will to be done, He knows Hudson and we rest in Him and His will.

I am personally grateful to all of the Mom's and Dad's, who have gone before us, and have had the courage and strength to share their story, about their sick child through a personal blog. Had I not made those connections... found families who know this pain, and can relate to the day to day of having a sick child, I would have felt isolated and alone in our situation. I found connections, bonds formed, and I realized there is a whole world of very sick children who have Mommies and Daddies who love them tirelessly, and who have the same heart desires I have for Hudson. So now it is my turn, and although I am not a "veteran" in any of this, I felt it was my time to share my story, our story, and pay it forward to a Mom or Dad who may get a diagnosis, be terrified, and start searching to see if anyone is out there, like them, in their situation. I am here, and there is a huge  world out there filled with parents and their special children, who are walking in the same shoes.

For Hudson, at this time there is no cure, only a cocktail of vitamins to try and help stop the progression of this disease. We pray for therapies on the horizon to help give Hudson the best quality of life. We continue to experiment with anti-seizure medications to stop these horrific seizures.

Hudson is a gift, he is a teacher and a preacher...
he is an instrument of God, he is a living angel....through a little body, so broken and frail, he posesses amazing God-given strength....unable to express by speaking he preaches a daily sermon....
How grateful I am to know and be Hudson's mom.

Hudson has 2 healthy siblings, Hunter 9, and Hailey 7. They are very loving and compassionate to their baby brother, as Hudson is teaching them how to embrace and care for those who are different, ill and in need.

His future is unknown, but left in the hands of He who created him. Through Jesus we believe anything is possible, and we rest our faith in Him alone.