We did find out what our buddy has. Some of you may have read about it on his Facebook and IG page. If not Broc was diagnosed with Primary Sjogrens System. This is another disease that affects his whole body. Organs, cells and tissues. Unfortunately he has another disease that does that too called Mitochondrial Disease. And yet another one called Ehlers Danlos Syndrome. Many people that have Sjogrens only have Sjogrens and not 2 other diseases that affect your body.
This disease still doesn’t explain a complete diagnosis for Broc. The Undiagnosed Disease Network is still looking. There are treatment options for Broc to help calm down his inflammation in his body. We are really hooping this will help with a lot of his pain. His new team are hopeful it will help to calm down his immune system from attacking his body.
This week the boys and I spent a week in Cincinnati seeing a couple of specialists. Broc’s Rheumatologist was hoping for Broc to see the Bone Marrow Transplant Team as they will be an integral part of his treatment but the Dr that we wanted to see is not accepting new patients so we will patiently wait for a phone call to see another BMT Dr in a couple weeks. Once he has been evaluated by them only then can he start treatment.
We also saw the Colo-rectal team to see if Broc will be a candidate for a procedure that may alleviate some of his belly pain. Unfortunately we found out that Broc is not a good candidate and that relief cannot be guaranteed. His belly pain is all due to his immune system. Every time it flares his whole gut shuts down and air gets trapped which causes immense pain for him. Unfortunately his disease leaves him very thirsty and a very sore but drinking anything even water causes severe pain and distention.
Dermatology took a sample of Brocs toe nails to see if there is a bacteria that we can treat. If not then we will continue with all the creams, filing down his nails and vinegar soaks. Unfortunately there is not much that can be done for Brocs toes. We will continue to use the topical creams when he gets cellulitis infections around his toe nails too. He was given the option to have his big toe nails removed but speaking from experience that is very painful and not something we want to add to Brocs plate right now.
GI and Advanced Nutrition Team who manage his TPN are making small changes to his TPN recipe. They are concerned with the huge increase of steroids that Broc will start too, so keeping his calories on the lower end for now. They are a little concerned about his bone density as it is on the extreme lower end of the spectrum. Something that they will be keeping a close eye on.
Mark saw Brocs Rheumatology Dr as well. He doesn’t have Ehlers Danlos like Broc and I but has Hypermobility Syndrome Disorder. His score wasn’t high enough for him to get an EDS diagnosis. He does have iron depletion so he needs to start taking iron supplements as soon as possible to help replenish his stores. Eating iron rich foods is not enough for him. He is also needing to be evaluated for Autonomic Dysfunction. We are hoping that because he is close enough to an adult he will be able to see my cardiac Dr for Neurocardiogenic Syncope or POTS. He will also be seeing OT and PT for his extremely tight muscles and flat feet which runs in the family. He will be seeing them when we go back in November.
In the meantime my health has been taking some strain. Keeping up with all Brocs needs and then some has been very taxing on my health. No getting enough sleep is also a huge culprit. Broc requires medication every 3 hours around the clock so that leaves me with only a couple hours of sleep at night. I have been diagnosed with Seronegative Rheumatoid Arthritis. I have started treatment but it’s not working as well as they had hoped so we are in the process of getting another medication approved. We all know insurance has their own timetable.
Thank you for all your continued love and support.
