Talan-24 yrs old
Diagnosis-IGg4 Systemic Sclerosing Disease
I just want to share with you my sons story and some pictures. My son now is 23 and will be 24 in April. He was a premature baby at just 29 weeks. He weighed 2 lbs 10 oz. You would never guess that now. His life consisted of on and off sickness that a premie would have, bronchitis, and pneumonia. As he entered school, he would call me and say he didnt feel good and to please come and get him. I asked him where he didnt feel good at, and he would tell me he couldnt explain it, that he just didnt feel good. When I would bring him home he would look very pale and start to throw up. We knew something was wrong very wrong but could never find it. As he entered middle school and High school he was a very natural athlete and played on the schools basketball and football teams. He succeeded and pushed through being sick off and on. He has had several sinus surgeries due to very bad staph infections in there. As a parent it is so hard to watch your child suffer. He was teased by friends, school teachers, yes school teachers and coaches that he was always sick and faking it. Nothing more unnerving than having peers that should be supporting him and helping him being the ones that were not nice. As time went on the teachers got better with him and knew for a fact something was wrong. His sophomore year in high school he was at football camp and during a drill he hit a kid head on. When Talan went to get up he couldnt. Come to find out he had broke his back. 3 months later he found himself at Shriners and Primary Childrens hospital to have back surgery. He had hardware put in and then 18 months later had it removed. At this point he did not go back to high school but finished community high. He was always told that he was lazy and that his parents should kick his butt and get him out to work. Oh how this torment has affected him to this day. No one understands how it is to be sick all the time and wonder why? Except those of us that go through it. This is when enough was enough for me and I started on the hunt for his disease.
It was when he was 17-18 that we were sent to the NIH for research to be done on him for cushings, because he was gaining and losing weight fast and his cortisol was all over the place. The findings were odd and they ruled out cushings but had us return again for more testing a year later. Still no findings again. They knew he was sick but when you are sent out there its only for what they are researching for and nothing else. This is where it gets frustrating! His pain level was horrible from his back, and the Dr that did his surgery couldnt understand why he was hurting so bad still. We took him to pain docs and were told to stay away from them. UM, yeah that wasnt an option. He was literally to where he couldnt walk after the two surgeries because of pain. I took him to you name it, about every doctor you could think of because of all the symptoms he was having. His symptoms were very random and would mimic all sorts of diseases. Finally he had had enough of Dr.s, until the day he started with what looked like shingles. It was awful, what ever it was made him raw and bleed for 4 months. We went to the U of U ground rounds to see if any of the Dr.s there could help. Dr. Gerald Gleich was willing to see him. He is an allergy, eosinophil, immune Dr.. He had us come to see him. Long story short after I had looked and looked over his labs from previous Dr.s I noticed that Dr. Gleich noticed one lab off. It wasnt ordered even though he questioned it. I called and begged him to recheck it. Just as I thought, he did have it checked and that certain lab that was drawn two years previous and it was off then was now 3 times higher. So of course as a mom you really start searching after no one wants to help you, if you dont fit their criteria, then your on your own. I cant tell you how many times this has happened to us. My son to this day cannot stand to go to a Dr. appt.. I dont blame him.
I came home and started researching why this lab was high. In the meantime he had a pain pump put inside of him to help him with his pain. When the Dr. put it in he came out and told us that his abdomen was as hard as a rock and it was very difficult to place his pump. So there was finally another clue for me. I started digging deeper into the journals from the Mayo clinic, NIH, Boston research, everything that would be legit. After researching, we went back to Dr. Gleich and I proposed that I thought Talan had IGg4 systemic sclerosing disease. As Dr. Gleich looked over his notes and compared what I had found he felt he had the same thing. Mind you, that Dr. Gleich does not deal with this kind of disease at all and didnt even know what it was. Talan also had tissue biopsies and it confirmed he was having eosinophils in his tissues, this is not normal and thats why we found ourselves at Dr. Gleichs office in the first place. So he sent us out to the Mayo Clinic to confirm he had IGg4 systemic sclerosing disease. Well, Dr. Gleich used to work at the Mayo for over 30 years and was chief of Staff there. Very renowned Dr.. While at the Mayo for 8 days NOT ONE TEST WAS DONE FOR IGg4, and I didnt know that until we came back to Dr. Gleich on returning from the Mayo. We were pushed off there to. Just because my son is on pain meds every Dr has had their say and pushes him off. I cannot tell you how awful Talan feels when no one believes him. I live with him and take care of him 24/7 and it is very sad to see and watch. HE does not want to be on them and HE wants a life. But anyway, sorry for my tangent. Talan came back from the Mayo and we did a stomach scope here in Tremonton Utah where we live, and I told the Dr. to take as many biopsies he could and then we needed to send them to the Mayo clinic for it to be tested for the IGg4. When the results came back, sure enough it was all through his digestive tract starting at the esophagus to the small intestines. We took the results back to Dr. Gleich and he confirmed that this was his disease. After 8-10 years of searching we finally have an answer, so we hope that this is the right diagnosis. Dr. Gleich said that Talan has had enough testing and he is just going to call it this. He also has eosinophils eating away at his tissues inside of his digestive tract. Its a constant battle for Talan every day, to find energy, be out of pain in more ways than one. Dr. Gleich was at least willing to try what Dr. Stone from Boston research has tried, and that is to do Rituxin infusions. Talan tried it twice, the first time seemed to help and the second round was unsuccessful. The only other option of treating this disease is steroids. Talan was told from his Dr at the NIH to stay away from steroids if at all possible because of his cortisol going out of wack all of the time. As you can see, we are so frustrated with having something so rare. This disease actually turns your tissues hard from the inside out. NO CURE, AND THEY HAVE NO IDEA HOW THEY GET IT, WHERE IT COMES FROM NOR DO THEY GIVE YOU A TIME FRAME OF LIFE? It is with great hopes there will be more research done on this disease. Dr. Gleich told us his colleges at the Mayo told him only 10 people have come through there with it. Why my son was never tested there for it is beyond me and Dr. Gleich because he specifically requested it.
To this day we do not have a Dr. looking over my son. No one wants to take him on because they dont know what to do for him. This is what is so frustrating and heart breaking for us and him. The only Dr. we have is a GP which will treat infections and his pain doc. Dr. Gleich has done his best to help, but is unsuccessful because he doesnt know anything about the disease but was willing to try to help us. We have been to Rheumotologists at the U of U and they were not helpful in any way shape or form. So Im in HIGH HOPES, that this new clinic coming will be able to help us, and others that are suffering and not pass judgement. We only want help! I was told that there is only about 10-15 people world wide that have this disease. I wish there was a way to be tested genetically for this, but I dont think they even know if thats where it comes from. I’m at a loss, and this is why I’m so willing to help with any volunteering with anything I can. Being an advocate for so long, I want to raise awareness about rare disease and help all that I can. My son takes 24/7 care, some days are better than others. My husband is a Box Elder County commissioner and I’m having him send out emails to all the politicians he knows for the Rare disease day at the Capitol here in Utah.
I have a blog on my son, and a FB page to raise awareness for this disease. So far I have had 3 people contact me through it that has been diagnosed. One from Cedar City Utah he passed away in October and they didn’t know he had it until the autopsy came back, one from Australia a 15 year old boy, and a lady from Missouri. It has done what I was set out for to help others that suffer.
Here is the blog on Talan its talansfight.blogspot.com
FB page is Talan’s Fight – Never Give Up https://www.facebook.com/talansfight