Jackson's been having a lot of health issues lately and we've been seeing some new doctors as well. I wanted to update family and friends on how he's doing but it's difficult when most don't understand whats going on. Also some people have been asking questions about what exactly is going on with Jackson and why things are the way they are, so I wanted to explain a little bit about what it is Jackson is dealing with.
Ever since Jackson was born he's had a variety of symptoms, seen countless doctors, had lots of tests and procedures. His current main diagnosis is mitochondrial disease. Mito is a difficult thing to diagnose and, for many people, requires many tests over long period of time to find out for certain if they have it. A lot of doctors say that it's "as clear as mud" in trying to figure things out. For Jackson we are still in the process of finding the exact cause, so he has a "clinical" mito diagnosis. We haven't found the exact genetic mutation, but the doctors feel Jackson meets the clinical picture, and many tests point to mito being what he has. Because of the nature of this disease we are treating him as if we know for sure he has it.
I wanted to explain a little bit about what mitochondrial disease is.
What is Mitochondrial Disease
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
As more research dollars are raised to find more effective treatments and ultimately a cure, some of the affected children and adults are living fairly normal lives with mitochondrial disease. At the opposite end of the spectrum, many are severely affected, and some children do not live past their teenage years.
When are they at greatest risk?
The child or adult is at risk for neurological or organ damage during and for the two weeks following an illness. Therefore even a simple flu or cold virus can have devastating effects on the patient, even death. Any illness must be treated immediately with medical interventions, like IV fluids and IV antibiotics.
You can find out more about mito on the website umdf.org
There is no cure for mitochondrial disease. The only treatments are treating symptoms that can be managed and taking the "mito cocktail". The cocktail is group of supplements that help the body improve function and may slow the progression of the disease. Jackson has recently started taking some of the supplements and we've some great improvements.
Some of the symptoms that Jackson deals with that are common in mito:
Developmental delays, autistic features, dysautonomia(temperature,blood pressure and blood sugars mostly), seizures, Weakness, cramping, dysmotility, hypotonia, muscle pain, diarrhea/constipation, fatigue, cyclic vomiting syndrome and other various symptoms.
Jackson is getting a stroller/wheelchair very soon. This is very common for children that have mito. It's mostly because of how quickly he fatigues and gets weak. Its also for his pain. Jackson's fatigue varies day to day. Some days he's able to walk and play then there's days that he needs help walking more then 10 yards. The stroller will allow him to do more on the days he's to weak to walk and also on the days that aren't too bad preserve his energy for more important things.
Thursday, November 4, 2010
Leading up to Halloween Jackson was pretty hesitant about all of it. We had talked about it quite a bit before hand and planning some things. Hoping this year would be better than last year. Last year was a horrible experience but we did learn what not to do. Jackson's school was doing a halloween costume parade and party. I knew he would want to dress up once he saw all the other kids in his class getting their costumes on. He really likes being with his friends. We came up with a lot of suggestions, took him to look at costumes but I told him it was up to him if he wanted to dress up or not. I wasn't going to force him. In the end he decided to wear the costume from last year(it was a little snug but still fit). I think it was because it was familiar since he's worn it several times over the past year and its been hanging in his closet. I sent it to school in his back pack unsure if he would wear it. I was a little late getting up there for the parade and missed most of it. But I was able to go to his class and be with him during the party. It was a lot of fun. Jackson was pretty cute and kept saying how much he loved me, asking me to sit right next to him, and for lots of hugs. Its fun getting to see him while he's at school.
Holidays(or any planned event for that matter) are a little different around here. With Jackson you never can count on how things will go. We've learned to just hope for the best. Saturday night was our wards(church) trunk or treat and chili cook off. It started at 6 so I tried really hard to make sure both boys had good naps that day. Jackson took about an hour nap around noon and Noah slept from 2-4. I thought we would be good. Just after getting in the car to go up to church Jackson fell asleep. We drove slow and made a little errand so he could sleep a little longer. Sometimes thats enough to get him through a hour or two outing. We got there a little late and everyone was mostly done eating. We hurried and got some food. Jackson was a complete zombie. Sitting in the chair with dark circles, unable to talk and make since. I figured it was the combination from still being tired and being overloaded sensory wise. Jackson does not handle loud things very well and it was extremely unnecessarily loud in there. Noah was very hungry so I hurried and fed him so that we could get Jackson out of there to make sure it wasn't more going on. With that look on his face sometimes you never whats going to come up. After we got outside Jackson did perk up a bit and Noah and him walked around doing the trunk or treat. Jackson was still a little groggy and had some trouble talking but he walked all by himself.
On Halloween we went up to my grandma's nursing home. They do a little trick or treat every year where all the residents come out front and let kids go through to get something from everyone. We got there a little early where sitting there talking with my mom and grandma. Within minutes Jackson was asleep on the chair and slept through the entire thing. Jackson fatigues so quickly everything going on was a bit much for him. I took Noah around and everyone loved him of course. After that we went back to my parents house for dinner and to hang out. Jackson and Noah mostly rested. They started getting a few trick or treaters and Jackson really loved giving out candy. He got excited to go out too. We took Noah and Jackson out to go do some real trick or treating around the neighborhood. We made sure to take the double stroller with us. We would push it right up to where you would have to walk up to the door and let the kids get out to walk up. They both loved it so much. We only went to maybe 10 houses but they loved every second of it and thought it was the best thing in the world. They where both pretty much done after that.
Monday morning came and Jackson was again zombie like. Dark circles, barely moving, to weak to walk down the stairs. I let him to stay home from school that day hoping that it would quickly pass again. It did. Within a few hours of resting on the couch he was back to playing. I hated that he missed school again. Its just so hard because any time we do anything extra it takes so much out of him. Overall though it was a great Halloween.