Logan’s Story

(Reprinted with permission from the Yahoo Groups page)

Amanda, Elizabeth, Susan and all the other parents out there,

This is Angela in Omaha Nebraska. I just wanted to chime in with our experience. It seems so many doctors handle this so differently on all levels. Logan was diagnosed the day his spots appeared at Childrens Hospital in Omaha. I thank my lucky stars for that. We were told he had HSP and that in 6 to 8 weeks it would go away and no treatment was necessary. This was Feb. 12th, 2007. 4 days later lots of purpura and excrutiating pain. He was put on Tylenol with codiene and steroids low dose. At this point we were just seeing a General Practitioner, we had no idea what we were dealing with. Then on Feb. 22nd, Logan was in lots of pain took to Childrens ER and they said he was impacted. He got an enema and was sent home after having a bowel movement. We got home and he was passing blood in his stool back to hospital and he now had an intussusception. He was hospitalized for 5 days and was very dehydrated. At this time Logan was 12 years old.

Then he left hospital with no purpura. Within one hour of being home from the hospital, he had dark spots or purpura covering his entire body worse that before. We called Dr. Amy LaCroix whom we met at Childrens Hospital she is a Pediatrician through University Medical Center of Nebraska. She explained that when he was on Prednisone through the IV it was much stronger and she assured us this was HSP and that it was just going to have to run its course but she did increase his Prednisone. Logan got the classic puffiness associated with Prednisone and gained lots of weight. Through this entire experience we were also seeing a Pediatric Nephrologist who was watching Logan's p/c ratio it was as high as 5.6 at one time. My doctor did not want to do anything until his purpura went away. So we continued to monitor his p/c ratio about once a month to once every two months. Not as often as some other doctors that I have heard you talk about. This worried me but I had to have faith. I did question it and was told by my Pediatrician and the Pediatric Nephrologist that testing too often was not necessary. Anyway Logan's active HSP stopped around the middle of September of 2007 6 months after it started. It was painful but got less painful each outbreak.

In September, we tested his p/c level again and it was over 6, the doctors and I were surprised because he had not had any active HSP for awhile. His protein in his blood was high as well. So they decided to do a kidney biopsy. On October 16th, 2007, he had a kidney biopsy he was now 13 years old. He had kidney damage and on October 26th, we had an appointment with our Pediatric Nephrologist and this is what they recommended, stating that it was a nationally known protocol for IgA nephritis in children. Cytoxan once a month for 6 months and then every other month for 6 months then quarterly for a year. Along with the cytoxan he is on Prednisone 60mg a day and Cozaar 12.5mg every evening. What confuses me is the difference between once a month and I know other children have had cytoxan for 12 weeks and then they are done.

Anyway here is the kicker, Logan has had 6 doses of Cytoxan. Once a month starting in December of 2007. He starts on July 5th, with his every other month regimen. Good news no bad side effects from the cytoxan. Zofran for antinausea is our best friend. During the chemo treatments. For those that are not aware Cytoxan is chemotherapy. Bad news his p/c ratio is still 6. After everything we have done his p/c ratio has not changed. The doctors and nurses say that we will not know for sure if it is working until next summer. One year and six months into the treatment is when we will know if it is working or not. How utterly frustrating!!!!

Logan has had a good attitude through most of this but I can see him wearing thin. The Prednisone has taken my beautiful son and made him extremely puffy. He had gained a ton of weight and in the fall he starts 9th grade. The kids have already started making fun of him. It breaks my heart. He does not like talking about it and just tries to pretend that every thing is okay. My point is like someone said before every case is different and some of us will deal with this for years where others will only have to deal with it for weeks. I think watching the urine is good but every week seems excessive. As far as activity, activity did seem to make Logan break out but if he wanted to play sports I let him anyway. I tried to keep him routine as normal as possible. As far as cause I think that varies as well too. Logan had not had shots, he had not been sick, nothing prior indicated a reason. Nothing!!!

I definitely know mine is not the worst case or the easiest but I am so grateful that in March of 2007 I found this group. Woman like Susan and others have been a huge encouragement to me and countless others. I wish a speedy recovery to all our children and May God bless us all.

Angela and Logan in Omaha Nebraska, Logan will be 14 in September VIP-mail-area