Landon's Story

It all started in July 2008 while we were at church camp. My husband and I went to the evening chapel service and when we came out Landon was screaming in pain and his left knee was swollen up. He had a few red spots on him so I thought he may have been bit by a spider or something of that nature. Then as the night passed he was not getting any better so we took him to the local ER and they did x-rays on his leg, but they found nothing so they gave him a shot of morphine and sent us home.

The next day a rash started to appear on his legs and arms. Still I was unsure of what was going on and of course it was a weekend. Later that night he came to me and said that his bottom hurt so I look at it and I was shocked at what I saw. Both of his buttocks cheeks were covered with blood under the skin. It looked as if he had been beaten badly. We took him to another hospital that night. They said that he had Rocky Mountain Spotted Fever. I had a hard time agreeing with that since he had no fever and he had not been anywhere to get a tick.

That next day we took him to children’s Hospital in Dallas, TX. I felt that I needed to have a second opinion if for nothing else than peace of mind to know what he had. When we got to Children’s the Dr. there said that he has HSP. He told us that the rash was common with the joint pain but he should have no problem and be fine in a few weeks. So we went home and after about two weeks that rash started to go away and the joint pain had stopped. At that point I thought we were in the clear and the worst was behind us.

OH BUT IT WAS NOT. After about one week of normal life I noticed that Landon started to throw up all the time. He could keep liquid down but nothing solid. So we went to his pediatrician and he sent us for an ultrasound, CT scan, and a lot of blood work. They did not find that HSP had affected his GI track but the blood test and urine test showed that we was losing large amounts of blood and protein in his urine and that was causing him to develop fluid in his lungs now.

About that time his pediatrician started him on a low dose of steroids. The next day he had gained 6lbs. His stomach looked like he was a 9 months pregnant woman. He had an outey belly button, face was so swollen, and his scrotum was the size of a baseball. At that point his Dr. called for a specialist to see him in Dallas.

While we were waiting to have our first appointment with the renal specialist he had another change. It was a Wednesday night and he had awakened from a nap and was screaming again in pain. He cried for about 5 hours before I could get him to calm down. When he did calm down he said he needed to go potty so I took him, my heart fell with what I saw. All of his urine then was the color of RED kool-aid. I knew that was not normal at all, so we packed up the car and headed to Dallas. They kept us for two nights to watch him but did not know what was causing it at all. So we left with no answers, which was the hardest part of this. You see your child getting worse and all Dr’s will say is I don’t really know why this is happening.

We went home and then saw the renal specialist that next week. He said that we needed to put him on enalapril (for the high blood pressure he now had from the HSP) and that we needed to have a biopsy to make sure this was from HSP and not anything else. We left in tears, stressed by not knowing what was next and getting really tired at this point. The biopsy was scheduled for September 18, 2008, and we were asked to say over night. Landon's doctor wanted to start a series of pulsing of steroids for every 4 weeks that would last for 3 days each.

Well the results came back and the cause was HSP and 50% of his kidneys were not working and he said they looked to be pretty bad and he hoped to be able to reverse the damages with drug treatments. If the drugs do not work and his kidneys keep getting worse we may be looking at having to have a kidney transplant. When Landon went for his October treatment the doctor said that there was no change so he wanted to add another drug called CellCept. This drug is used for patients that have had a transplant and it completely shuts down your immune system. It also has some bad side effects that I was not too comfortable with. But I really had no other option so we added that drug.

After six months of treatment he is showing minimal blood in his urine and no protein loss at this time. He will remain on all his medications for a full year. We pray that the worst is behind us now.