Cameron's Case History

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I posted here in June asking many questions and at that time I read a lot of case histories, hoping my son would never be in this section. I want to share his story with all of you because C-diff has devasted my son Cameron. <BR>He is a 14 year old special needs child. He originally got c-diff in March 2002 after 3 weeks of IV antibiotics for a shunt infection. He had 2 months of non stop diarrhea before he was diagnosed with c-diff. The tests always came back negative until he got psuedomembranous entercolitis. He was hospitalized due to dehydration and feeding difficulties. Since this time he has been in hospital more than out. <BR>All of June - in hospital on IV fluids and placed on an elemantal formula (digested) so his system could tolerate nourishment. He had severe nausea and diarrhea despite continuos Vancomycin treatment, treatment with rafampin, cuturelle and florastor. While on the Vanco his stools would be negative for c-diff but within a week or 2 of coming off it he was positive again and extremely sick. <BR>July - we visited GI specialist at Childrens in Vancouver. They started him on VSL#3 and a formula called Peptamen with fos/Inulin. His feeding difficulties persisted. He was hospitalized again. <BR>August -he was transferred to BC Children's hospital and test were done on him. He had a gastric emptying study done which showed extremely delayed emptying. His stomach was barely working. The Dr. felt we should continue to push food on him inspite of his nausea. They were treating him with a chemotherapy nausea medication -ondansetron. He also had an endoscope done and it showed he had severe gastritis and h-pylori. <BR>His c-diff test came back negative so once again the Vanco was stopped and he was discharged. <BR>One week later he was once again admitted to our local hospital with c-diff and dehydration. This time his nausea was really bad, his stomach wouldn't work at all and he was started on TPN (total parental nutrition). It was felt he needed bowel rest and nutrition as he had lost so much weight. His H-pylori had to be treated with antibiotics as it was felt this was the problem with his stomach. So he was put on several antibiotics and Vanco. <BR>He was in our local hosptal for 5 weeks and then tranferred again to Children's hospital for another 6 weeks. They were trying to get his stomach to work so he could get off the TPN. Cameron has always been tube fed into his stomach by a g-tube. He has deformaties which interfere with his swallowing correctly. It was decided to put a j-tube into his small bowel through his g-tube site. This would be temporary and see if he could be nourished by by-passing his stomach. This was a long slow process to get him off the TPN and on formula again. One of the side effects of j-tube feeding is diarrhea. His diarrhea has never gone away since the beginnning of his c-diff in March. When he is on Vanco he only goes 2-5 times a day but off it he going 5-10 times a day. By the end of October Cameron was fully nourished by his Peptamen formula and stable enough to come home and wait a month for his surgery to place a permanent j-tube in him. He was home the whole month of November but he was still quite sick. We tried to take him off the Ondansetron (anti-nausea medication) but that was impossible. <BR>He went back to Children's hospital the beginning of Dec for surgery to get his permanent j-tube. He was in hospital until Dec 23. We actually made it home for Christmas. The surgery went well but he got infection in his incision. They didn't treat it with antibiotics and thought we could let it clear on its own. He came home with his incision still infected and needing soaks and dressing changes a few times a day. I had hoped we could avoid antibiotics but yesterday it really flared up and he is now on Biaxin and another round of full time Vancomycin just in case. I am very nervous of course because his last round of antibiotics nearly killed him. <BR>Cameron was born with brain damage and facial deformities. He is deaf and blind but he has had a great life. He has learned to sign and communicate quite well. He enjoyed life and was active. He went to school everyday. Since he got c-diff he has been so sick he hasn't attended school since March 2002. <BR>Before our set back yesterday Cameron was on a regime of Vancomycin every 3rd day to keep the c-diff away.He is living on Ondansetron as his nausea is still extreme even though nothing is gong in his stomach. I don't see an end in site to this. The Dr.'s at Childrens said we could do the fecal enema if he tests positive for c-diff again but he never will while living on Vancomycin and we are all too scared to take him off it. <BR>So who knows what the future will bring. My hope is now that Cameron is getting good nutrition again plus good probiotics slowly his body will heal from this horrible illness and he can get his old life back. I will keep you posted on how things go. It has been therapeutic to write this as I know all of you who read it can relate. <BR><BR>[Guest Posted by: 'Shelley']

[Guest]

An Update on Cameron <BR>I hope I don't jinx him writing this but he is doing quite good. He has been c-diff free since June 2003. He finally got off Vanco and was OK. He still has infection in his j-tube site but it clears up and comes back and he hasn't needed antibiotics for this all summer. He is still on Florastor and cultuelle. I think he will stay on these for ever. He still has nausea but we are weaning him off the ondansetron slowly as there is no study on the long term effects of ondansetron. I think Nausea will just be something he will have to live with. He still has loose BM's but only 2 a day. He has gained back all his weight and looks great. The best news is he feels great. He is nearly walking again and is back in school full time. He is back to my happy little boy.