We took pictures of the sores because we thought he was going to die from lack of treatment and we would need them to sue.
These pictures show some of the awful sores on his legs, face and hands. We are not showing the pictures of his perianal region where the yeast was at its worst; they are much too gruesome. If you can imagine his perianal and genital region looking like a freshly cut, raw steak, then you're getting close.
I kept telling the doctor that I was sure that these sores were an external manifestation of an internal problem. I begged her to hospitalize my son or at least give me a referral to be seen out at Loma Linda where he was successfully treated before. She finally put Sammy in the local regional center, most probably to get me off of her back. This hospital did not have a pediatric ward. They didn't have central A/B monitors so that the nursing station would know when he was bradying. My husband and I did not leave his side for a second because he kept bradying and desaturating. The hospital didn't even have an oxygen flow regulator to measure pediatric levels of oxygen. His face was too broken down to wear the nasal cannula, and it took our insistance and most of the day for them to rig up some sort of an oxygen tent for Sammy.
All they were doing for him at the hospital was keeping his perianal region exposed to air and under a heat lamp to dry up the sores. They give him a mild I.V. antifungal medicine. When the IV for that became infiltrated, the doctor was going to send us home on oral medications, since there was "nothing more she could do for us." The sores were so bad that they were bleeding, and Sammy was in extreme pain. We missed our beautiful baby - it was so hard to see this bleeding, oozing baby who was reduced to wimpers because he became too weak to scream. We begged her to give him pain medication, but she refused. We begged her to put him on amphotericin due to his history of yeast infections when he was in the NICU. She refused to do this because it would mean transferring him to a tertiary care facility. We pleaded with her to send him to Loma Linda UMC. We insisted that she call in a dermatologist to diagnose the sores to which she finally agreed. The dermatologist was shocked at what he saw, and he couldn't believe that they weren't putting any strong medicines on the sores to fight the infection. He postulated that it may be a zinc deficiency that was causing the sores. He agreed that Sammy needed to be seen "out of group" at Loma Linda UMC.
Only after our desperate pleas for help, our continual demands to be seen by a specialist, and the recommendation from the dermatologist, were we finally transferred to Loma Linda University MC Children's Hospital where Sammy was put in isolation. We were seen by Pediatric Infectious Disease, Immunology, Hemoncology, and Genetics. They did many blood tests, skin cultures, a skin punch biopsy etc. He was diagnosed with a Candida infection. It was at this point that we discovered that he had hypogammaglobulinemia; he wasn't making antibodies. The lab result levels were so low that they thought the machine was malfunctioning. He was put on amphotericin yet again to fight the Candida. It took 19 weeks to clear up the infection. They had to surgically place a central thoracic catheter to administer the amphotericin since they couldn't start any more I.V.'s and we had blown two PICC lines (peripherally inserted central catheter). Sammy started to recover due to I.V. amphotericin, but the thrush and sores, albiet much improved, still lingered. We then started using "Fungizone" which is a cream form of amphotericin B. Within two days the sores were significantly better. Within one week, they were almost GONE!!! We also used two treatments of Gentian Violet which got rid of the thrush.
Due to Sammy's low immunoglobulin levels he was prone to infections and had to be isolated at home. After prolonged and severe respiratory infections through the fall of '96 and winter of '97, it became necessary to give him gammaglobulin therapy about once a month. The infusion was given through his central line, and lasted about two hours. It caused him significant discomfort. We had to premedicate with diphenhydramine to reduce the reaction and help sedate him.
We continued to keep Samuel isolated at home. We did not give IVIG during the summer months since that is a healthy time of year. Sammy did very well. We retested during the summer of 1997 and his IgA subclasses were still zero, but his IgG levels had increased for the first time. We first were ecstatic that he was starting to make his own IgG. However, after both my doctor and I did some research, we realized that we hadn't waited long enough since his last gammaglobulin infusion, and the IgG increase might just be residual from the IVIG. So...... we had to keep waiting and praying that he was actually making antibodies.
When Sammy was turning two in October of 1997, we wanted to have him dedicated at our church. We decided to draw blood levels again right before his second birthday to see was was happening. We found out the Friday before he was dedicated that he was starting to make some IgA for the first time ever, and his IgG was even higher than it was in the summer! Our little one was finally making some antibodies! At first the doctor told us that we could start bringing Sammy out into the world. She soon rescinded those orders. Within a week, Sammy developed a severe respiratory infection which lasted for the rest of the year. Then, he developed a fungal infection on his skin which persisted from the end of December into February of 1998. We kept him isolated through April which coincides with the end of RSV (respiratory syncytial virus) season. We did not give him IVIG and let him fight off the infections without it.
We retested his levels in April of 1998 and received wonderful news. His IgA had continued to climb, although it was still below low-normal range. His IgG also had increased to within the low limits of normal!
In May of 1999 we retested his antibody titers again and were delighted to find that all subclasses of antibodies were elevated and now within normal ranges! Our prayers have been answered! It has been a very long road living with the fear of infection, having to keep him completely isolated, having to care for his central venous catheter, and trying to provide a stimulating environment to a boy who has never played with another child. We are enjoying being able to expose him to the world like any normal child. Watch out world, here he comes!
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COPYRIGHT 1998 Susan Warren. The original story, pictures, art, isolette cover pattern and tiny feet background contained in the web site are not to be copied which is prohibited by law.