A couple weeks ago Broc and I headed to Cincinnati to visit his team and a new Dr too. We have seen a Dr like this once before but were dismissed so I was very hesitant to visit a Rheumatologist again. I’m so happy we did. He is an incredible Dr with so much knowledge and so compassionate. We spent about 2 hours in his office. He asked a million questions and more. We got talking about Brocs dry eyes. I said well he’s had them for about 5-6 years and we were just told its his medications that he’s on. Then he looked at his other symptoms like his pancytopenia (which is extremely low blood counts), his unexplained fevers, chronic pain and illnesses which are causing him so many issues. He has been dealing with most of these symptoms since he was 2 years old. He asked me if I have ever heard of Childhood Sjogren’s Syndrome ? No. I had only heard of Sjogrens and that would be the disease that affects adults.
So he asked if we would be willing to start the process of all the testing. I said well what do we have to lose. He’s still undiagnosed and he’s not getting any better. If we can help him in any way to feel better we certainly want to do that. The testing involves an ultrasound of his saliva glands and neck, lots of bloodwork and lastly a biopsy of his inner lip to test the cells.
We will be heading back to Cincinnati next week for the ultrasound then next month again for the bloodwork. He has to be off his steroids to be able to have his bloodwork. Once we are done talking about Broc and the rest of my family he says to me Mom I think you should consider getting yourself tested too. So now I’m waiting for my appointment too.
He also referred Broc to Rheumatology Physical Therapy. We had a great evaluation with them. They gave us a few exercises to do with Broc at home. He is doing very well with them. There hope is that this will help him get stronger and stronger.
We also found out that Broc is Vit D deficient so he will be getting additional Vit D too. Unfortunately our only option is to put it through his J tube. It not a great idea as it only causes more belly issues for him but we don’t have many options.
We then moved to Dermatology. Again his skin issues are being blamed on auto immune. His toenails too. He keeps getting cellulitis around his toe nails and then another nail grows but the previous one doesn’t fall off. All they can do is treat the cellulitis.Next they looked at his legs and the hairs on his legs are growing like corkscrews so I guess that’s an issues and another vitamin deficiency. Vitamin C this time. He will be having bloodwork to check those levels.
It’s been a very busy few months. His immune system is really taking a hit. His dry eyes are causing infection in his eyes so we are medicating his eyes as much as we can with artificial tears 5-6 times a day and antibiotic drops. He is still having good and bad days.
He has really enjoyed going to meetings every Sunday to see all the friends. Unfortunately he has been sick a few days later every time he goes so we know his immune system is having a hard time. If he does indeed have this new Syndrome then we are hoping that starting treatment will bring him much relief.
We also discovered that his legs are turning purple when he sits and stands so we have been in contact with his vascular team and they recommended ultrasounds on his veins and arteries to a make sure there are no occlusions or blockages. If the ultrasounds are normal then once again it will be blamed as an auto immune symptom.
I will keep you all updated as we get the results. Thank you for all your continued love and support.
