Please keep in mind that our Dr. for Talan is in his 80's and he tends to change his mind often, so this is the route that he has chosen for now, it could be subject to change. We will know more next Friday when we go back for an appt. Oh where do I start? Upon all the prayers that have been said from our family and friends we finally and hopefully have an unanswered question answered. It has been a very long, long, long, 7-10 years! We took Talan to his Dr. at the University of Utah yesterday (July 20, 2012) I will never forget this day.... The Dr. came to a conclusion of what he is going to treat Talan for. It is called "IGg4 systemic sclerosing disease." It is very rare, obviously. Dr. Gleigh (Glieck) is how it is pronounced. He has been a Dr. at the Mayo clinic for over 30 years and moved out here to kinda retire. He is the one that sent us out to the Mayo in April for more testing. As the Dr.s reviewed Talans case they came to this conclusion. It has been a long road for all of us. I cant imagine how Talan has done this for so long and what a courageous battle he has fought! The not knowing of what his disease was and how he would express his frustration of how to make people know he was really sick.
When you have something that is rare and the Dr.s cant seem to find the problem and they know he is sick, its the people on the outside that dont understand. I can recall times that his coaches would call him a sicky, also those that would tell others that he was just faking it because he was lazy, or that he was addicted to meds, and so forth. Talan would feel so bad when he would hear these things and ask why people dont understand? I dont want this myself! We would tell him until someone else goes through what you and we have they will never truly understand. It is by faith and prayers that our family has been able to deal with such an agonizing frustration with a chronic illness. We now finally have an answer to our prayers. It is such a bitter sweet moment. It may not be what we wanted to hear but at least its an answer.
This is an autoimmune disease which means it will never be cured, but can be treated. At this point we do not know what the infusions will do for him. We arent sure if they will suppress the disease, slow it down, or help with just the symptoms. It is on we"ll see basis. The Dr.s dont know much about this disease because it is so broad.
There are treatments such as steroids that they say will help, but not a choice of action for Talan. He cannot have steroids because his endocrine system is being affected and his body is over producing a natural steroid in his body. The Dr. will attack it at more of an aggressive way with an infusion of probably what is called Rituximab or Rituxin. There may be more meds chosen but we do not know at this point. We do not know what organs or if any are involved at this time until we do further testing, scans, ect. We do know that his tissue under his abdomen, back, and flanks are being affected. We also do not know the outcome of the disease! All I know is this disease is mean! You are so so sick, and the pain you get from it is unbelievable... our hearts just ache watching Talan suffer. We are in hopes that the infusions will help him, although the Dr. told us that a sclerosing disease is very hard to treat and it could take him up to a year to fully regain strength. Im sure little by little he will feel better but the doc also said that there is side effects to the infusions, but the doc said to keep in mind the outcome of eventually feeling better. Talan still has a long road ahead of him and his emotions are of course all over the place. Lots of questions that we still just cant answer, but we will move forward with faith.
I have attached a few links that you can go to and see a little more explanation of the disease, but keep in mind that it is rare and not all that you research pertains to the disease. It seems that it supposed to start in the pancreas, but we do not know that yet with him. He will be having a stomach scope this week for further testing. He throws up a lot and gets bleeding ulcers in there.
REMEMBER that this disease is a systemic and sclerosing disease. Systemic means that any of our systems of our body can be affected one or more at a time and this is why it has been so hard for Talan to be diagnosed. One system would act up and then go back to normal, then another would act up and then go to normal.
TALANS SYMPTOMS: Very fatigued, fever, throwing up, bleeding ulcers in the stomach, you see what his skin does and then the tissue turning hard, pain all over body, headaches, inflammatory problems throughout his body, water retention, weight gain and loss of weight. Im sure there are more but this is what sticks out in my head. Stan and I spend sometimes endless nights up rubbing his muscles in his arms, hands, legs, feet, neck, and head. Sometimes his pain is so unbearable we just sit and cry together.
We just want to thank everyone for keeping him and our family in your prayers and putting our names in the Temples. I have even heard from a friend our names went in the temple in Texas! This is truly what has been keeping us bouyed up and being able to deal with life. It is such a violent chronic disease, Talan has truly been a great example of Christ like courage, faith, and hope! Needless to say I need to mention his sister Jandie for being the other great example of Christ like attitude! She literally keeps us all going. I have come to realize that I have such special spirits that chose to come to us as their parents. I feel so honored to be their parent.
If you wouldnt mind to still keep Talan in your prayers, he still has a lot he will need to go through to fight this disease. We are deeply greatful to all of you that have stood by our sides and helping us through our trial. This is what we have been put here for to see how well we pass the test! LOVE YOU ALL!
This disease is so complicated that I cant even explain all that is happening to Talan but here is the links that hopefully will help a little. Dont worry if its over your heads cuz its still over mine, but I have also studied so much in the past years that it makes sense to me.
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CGkQFjAB&url=http%3A%2F%2Fen.wikipedia.org%2Fwiki%2FIgG4%25E2%2580%2593related_systemic_disease&ei=K2ELUPmUKqGY2AXQ_NUv&usg=AFQjCNGeNiUJMbsQNHDvcyG1hH2YmEHwmg&sig2=iy0uB_VGuOggBbYdZ_Sbdg
http://e-immunohistochemistry.info/web/IgG4-related_systemic_disease.htm
