Jaxon and Hayden were both diagnosed with 2 rare autoimmune disorders in the same month in August 2006. It was a whirlwind then, and seems to be one still. But no matter what comes our way, we try to remember what God promises us everyday..."We can do ALL things through Christ who strengthens us."~Philp. 4:13.
Jaxon started his disease at age 4 with high spiking fevers (105-107 degrees), that would spike usually 2 times a day, and a strange rash that would come and go on his entire body. We watched it for a couple of weeks, then were referred to Mayo Clinic for further testing. After going through every test possible, they diagnosed him with Still 's Disease, which is a rare form of Juvenile Rheumatoid Arthritis. It is systemic, meaning that it can affect all parts of his body including his inner organs. He has been a very hard case for his pediatric rheumatologist, Dr. Mason. We have been through a ton of medicines over the last 8 years with the last one working the best. He has been on many different doses of prednisone, and other meds that have had many side effects on his body. The most obvious has been what the prednisone has done to his growth rate. He hasn't grown much in the last 5 years, being in only the 3rd percentile in both height and weight. He has a monthly infusion at the Cancer Center in Fergus Falls, and it keeps his blood markers looking pretty good, but we know that it is just a bandaid to what is still going on inside. He has injections of steroids directly into his worst joints about every 3 months at Mayo. His worst joints are both of his hips (the right one is permanently damaged, and worse than the left), both of his knees and usually both of his ankles. He has had lots of problems with his stomach too, dating back to even infancy, so that is something else he takes daily medication for (Inflammatory Bowel Disease).
Even with all of this he has been in school most of the time, missing some days due to a bad flare, or a trip to Rochester. If he is in pain he uses his wheelchair or walker to make it through the day. His classmates and teachers are always so helpful and caring.
Since the beginning of January 2014 he has had some other issues that have really been concerning and hard to watch. We haven't yet completely figured out what is going on or why, but he has had increased inner cranial pressure, from his body producing either too much cerebral spinal fluid or not being able to filter it correctly. He has been very lethargic, dizzy, seeing double, confused, hardly talking (and when he does talk it is very quiet and slow), having bad headaches, and just all around feeling crummy. At the beginning we had him try school, then half days, or even a couple hours, but he would end up in the nurses office sleeping after a little over an hour, so he has been home now for over 2 months. He has tried to keep up with his school work, but it has been hard for him to even concentrate or have energy for a little bit of the day. He even has a hard time being around his brothers, or going anywhere. He mostly just sits around and either reads, plays video games, watches movies and sleeps. He usually is taking a nap almost everyday and then is ready by 7pm to go to bed. For awhile there he hardly had enough energy to hold his mouth shut during the day.
We have been to Mayo once or twice a month since the beginning of January, seeing not only his rheumatologist, but his endocrinologist (because of problems with his adrenals not giving his body what it needs), and a neurologist. He has had 3 MRI's, and 2 spinal taps (one sedated, one with out sedation), which have shown us an unusually high pressure in his brain. He has tried some medications to slow the production of the fluid in and around his brain, but they didn't seem to help at all. They are trying to figure out why this is going on in his system, but haven't figured it out yet, and are trying to do everything they can to get that pressure under control without having to do surgery. So for right now he is off almost all of his meds. even the monthly infusion for his Still's disease, to see if any of those have triggered this increased pressure. He is scheduled to have another spinal tap without sedation on May 15th, and appointments with each of the doctors then as well.
Hayden was almost 9 months old when he was diagnosed with Transverse Myelitis, which is a VERY rare auto immune disease that comes from a virus (like a cold, or the flu) turning into an antibody that attacked his spine. It almost looked like his spine was in a bad accident or something on the MRI with the amount of his spine that was affected. He was paralyzed from the chest down, and was given a high dose of steroids almost right away. We stayed in the hospital for 12 days, with multiple visits to the neurologist, MRI's and physical therapy afterwards. He made a wonderful recovery from what we saw at first, growing and walking at a normal age. He had some residual effects at first in his legs, especially his ankles, and used braces to help him walk. But eventually he has grown out of those, and has done SO well in the walking, running, jumping area it's really a miracle!
A couple of years ago when we started trying to train him, it just wasn't working and we were referred to a urologist in the Cities. They diagnosed him with neurogenic bladder, and we started catheterizing him 4 times a day, and he was also put on some meds. He did just fine with this, but was still wet all of the time, so we did some more testing as he got older and found out that his bladder really hadn't grown at all since the Transverse Myelitis attack at 8 months. His bladder was super little for his size, and that was why he was leaking all of the time. So in August of 2012 he went thru a bladder augmentation surgery at Children's hospital, in Minneapolis. They used 14 inches of his small bowel to make his bladder bigger. They also used his appendix to make a tube from his belly button to his bladder for an easier access for cath-ing. He was in the hospital for 10 days, and a couple weeks of recovery at home. After that surgery he seemed to have more bladder infections than ever before (about 20 in that first year), and was still having problems staying dry, so we decided to get a second opinion at Mayo clinic. He was seen and put on 2 medications that we hadn't even heard of. One is something that helps break up the mucus in his bladder that is produced by the small intestine, and one is just an antibiotic that hangs out in his bladder overnight and keeps infection away. He has done SO much better as far as the infections go, but the leaking is still a problem. We had a bunch of other tests done at the end of January, and he still has some issues with the lower part of his bladder, and maybe the augmentation itself. So at the end of July he will be having another surgery to repair that and his appendix site (because of lots of bleeding from that area). He will likely be in the hospital for at least a week, maybe more depending on how much work they need to do in his bladder. He will also have a couple weeks of recovery at home, with catheters staying in until things heal. Hopefully this will lve the leaking problem, and he will be able to be a pretty normal kid from there on out.
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