Help Holly

WHAT HAPPENED: Our little girl became ill in July 2006 (then aged 3) with serious bladder & bowel problems. Although Holly has had problems, on & off, since she was only 4 weeks old, the Doctors just called it "colic" or "constipation", but I knew it was more serious. Holly had many infections, especially urine infections, a bowel condition called Intussusception when she was 21 months old, and was diagnosed with an enlarged kidney and duplex ureters to that same kidney. Holly also has a slight problem with her immune system, so she can get quite sick with infections. Then after a fairly good year of health, Holly became much worse in July 2006 and then she was in hospital for 6 weeks during September/October 2006, and had many tests to try and find out what was causing her symptoms of severe tummy pain, loss of appetite, tiredness, pains in her legs etc. One test showed she had a very enlarged bowel (esp. the large intestine) a very large bladder, and large stomach. Her bowel also doesn't work properly as it's " too slow", although the laxatives she is on now are helping her. She cannot tolerate solid food very well and was given prescription drinks, in October 2006, called Scandishakes to take the place of normal meals. The main condition that was mentioned in October 2006 is Hollow Visceral Myopathy. Although a year later we were told that it isn't this condition. Then in July 2007 Holly was put on a dairy-free diet and her Scandishakes were replaced with ProvidExtra drinks. ****************************************************** HOLLY ALSO SUFFERS WITH A BLADDER CONDITION: Along with Holly's bowel condition, Holly's bladder also stopped working properly in September 2006 and caused very painful urine-retention, and now she has a catheter through her tummy straight into her bladder, called a supra-pubic catheter. After having the suprapubic catheter for 22 months, Holly was going to move onto using Intermittent Catheters to help reduce the amount of urine infections she is getting, but the Neocate drinks she was on for her bowel, helped her bladder condition too and her bladder started to recover: The suprapubic catheter was removed in Aug 2008. In 2006, Doctors thought that the illness went undiagnosed for so long, it caused her bowel to swell and this pressed on her bladder, squashed it, and stopped it emptying properly. Although in 2008 some other Doctors think it is more complex than that, and that she has the same condition in her bladder as in her bowel. In the bladder the condition is called Eosinophilic Cystitis. To date, we still don't know for sure what is causing her bladder condition. Holly's bladder is still very large and she still has some urine rentention which is being treated by a speacialist nurse.****************************************************** HOW HOLLY GOT A DIAGNOSIS FOR HER BOWEL: After Holly had colonoscopies and biopsies in October 2006 and again in July 2007, we then saw a private Doctor at GOSH in October 2007 and the conditions Holly has been diagnosed with is: Eosinophilic Enterocolitis. Holly has to avoid Dairy & Lactose to help her overcome this condition, some dieticians call this a "MEWS" diet because Holly also has to avoid Milk, Eggs, Wheat & Soya. In Oct 2007, Holly's diet has been restricted even more, and now she is having special drinks called Neocate Active on prescription. Then during the winter of 2007/08, Holly had one infection after another and this caused a "flare-up" in her Eosinophilic condition. By February 2008 Holly could only tolerate JUST Neocate, she had an Ng (nasal-gastric tube) fitted to help her to take the Neocate drinks (as she hates them!). Holly couldn't eat for 4 months! The Neocate diet helped Holly so much that in June 2008 Holly started eating "safe" foods and we are reintroducing one new food a week, but in keeping with her Hypoallergenic Diet. In August, after 5 months, the Ng was removed. ****************************************************** Since getting this diagnosis for Holly I have set up a new page on here called "EOSINOPHILIC SUPPORT". I started it on the 1st November 2007. It was set up to try and give others the information I was finding so hard to get hold of myself! Please click the banner of Holly below to go to it.I edited my profile with Thomas Myspace Editor V4.4 (www.strikefile.com/myspace)