Our daughter was four months shy of her 11th birthday when she was diagnosed with systemic scleroderma in May 2006. The doctor who diagnosed her told us that she probably had had "below the radar symptoms for a while" and that it was very common to miss them. Looking back this was true.
In October 2005, Zoe came to me w/ a few cracks in her fingertips that I attributed to "dry skin." She'd been riding her bike to school and while the weather was getting colder she hadn't been wearing gloves. I thought it was a result of the colder weather. Though I noticed that these took a LONG time to heal, I wasn't too alarmed. Then in December 2005 we noticed that her fingertips were turning purple. We thought it was really odd and attributed it to her being cold and needing to wear more layers. Oh the excuses you make when you don't know, or want there to be, something seriously wrong. It was also around this time that we noticed that she was having difficulty twisting the lids and caps off jars and bottles. In January 2006, while at a routine visit w/ my family doctor I mentioned the cracked fingertips and purple fingers. Our doctor said that it sounded like Raynaud's and referred us to a rheumatologist because Zoe had also complained of pains in her shins. In early March '06, I called the rheumatologist to set up an appointment. By this time, Zoe was frequently waking up in the mornings nauseous. Again, there seemed a "logical" explanation. With everything in bloom, we were told it was post-nasal drip and that this was probably going down the back of her throat and making her sick to her stomach. In addition, she commented that she was having difficulty running the mile in the gym so I thought it was allergies or asthma. At this point I still didn't know of scleroderma.
After the diagnosis, Zoe was on Prevacid and Revatio from May - December 2006. The former was to protect her esophagus from acid reflux while the latter increased circulation to her hands and prevented ulcers from forming. In July 2006, we had (2), two-hour Prednisone IV drips. Zoe was to have four of these and then start Cytoxan. However, an ulcer on her right hand couldn't handle the drop in her immune system and she was hospitalized and ultimately given a picc line of IV antibiotics to treat the infection that had gotten into the bone of her finger. Zoe was on clindamycin for three weeks-450mg three times a day-at which point she broke out into a rash. The doctors assumed that she must have developed an allergic reaction and switched her to an oral antibiotic. A few weeks later, Zoe was given a routine pulmonary function test (PFT) to check-up on her lung capacity. We were getting ready to start her on Cytoxan and were told it would address her lung involvement and slow down the progression of the scleroderma. Interestingly enough, her PFT readings in some areas were now normal while still others saw modest improvement. Since we didn't have her on any medicines to specifically "help" her lungs, we immediately contacted her rheumatoid doctor to see if she might be able to account for the improvement and postponed the Cytoxan treatments indefinitely. As a concession, because we were still trying to "work with" the pediatric rheumatoid community, we agreed to put her on methotrexate injections that she took from September - December 2006. She was taken off these because it was harming her liver.
It would seem that her hospitalization in July '06 had a silver lining. It was at this time that I was on-line with the juvenile rheumatoid group I belong to and a mother posted an inquiry as to whether any one had heard of an antibiotic protocol (AP). She had recently put her 16 year-old daughter on it for scleroderma and was pleased with the results. I in turn Googled the term and learned that it is an IV and oral therapy that has been used for over thirty years by some doctors in the medical community who believe that rheumatoid illnesses are caused by bacteria. Furthermore, patients see their symptoms improve or go away altogether. What was so interesting to me was that the protocol initially calls for a 5-day, twice a day, and IV drip of Clindamycin. The very drug Zoe had been on back in July. This seemed a possible explanation for why we saw an improvement in her PFT as well as in the condition of the skin on her arms and hands.
I immediately followed up with this mom on-line as well as with several other folks who have used AP. After reading numerous on-line personal accounts and a book entitled "Scleroderma: The Proven Therapy that Can Save Your Life" by Henry Scammell, I was convinced that we had to at least try it. Our quest to get AP for Zoe led us to Ida Grove, Iowa during the last week of September 2006 where Dr. Sinnott has been practicing it for over thirty years. He is one of its early pioneers and has helped over 2000 patients. Dr. Sinnott met with us and given Zoe's history with a rash, he recommended we start with a low dose to see how she responded. If she didn't have a negative reaction he'd gradually bump it up. As it turns out, Zoe did just fine and after 7 doses of 300 mg she was moved up to 600 mg for the final three IVs. In terms of continuing care, Zoe takes the oral antibiotic minocycline twice daily and we have been back to Iowa on two other occasions (March 2007 and September 2007). On the subsequent trips the amount of clindamycin she gets has been bumped up.
Since her first getting clindamycin in the summer of 2006, my husband and I have noticed how much more supple the skin on Zoe's hands and arms are - early on they were as tight as a drum. She also has her upper lip back - it seemed to thin out and disappear for a time. Zoe also receives occupation therapy (OT) to help her regain strength in her hands as the infection left two of the fingers on her right hand in a bent position. For a time she saw an OT person four times a month and since last Summer (2007) is down to every other month, once a month.
In addition to the IVs in Iowa every six months, Zoe gets a "pulse" dose almost every month and is taking probiotics to offset the impact of antibiotics to her digestive track. We have also incorporated holistic methods and Zoe goes for acupuncture three days a week. We are cautiously optimistic that we are on the right track. One always worries to some degree and yet the anxiety level we experienced early on has diminished greatly.
Paula Krauza (Zoe's mum)
You can reach me at paula_krauza.com