» Alternate Therapies
How making the connection made a difference for Ursula
The CdLS Connections meetings are held twice a year and are open to all families whether they have a newly diagnosed baby or an adult with CdLS. Families get the chance to meet professionals and sometimes get a different view on an old problem. This was the case for Anne and Francis Youell whose daughter 11-year-old Ursula suffers from reflux. She had received treatment but a visit to a CdLS family meeting helped them realise what more could be done.
She was also on Gaviscon, she had been on other medication for her reflux but none of it had really helped.
We visited the gastroenterologist at Alder Hey Hospital every six months and in 2004 it was suggested that Ursula have a fundoplication, we did not want this and in all fairness the consultant said Ursula did not present as a typical reflux patient she was thriving and putting weight on, however she still had the acid reflux.
We requested an endoscopy and the result was that Ursula had a severely inflamed oesophagus. Ursula seemed well in herself and it was decided to wait 12 months and do another endoscopy.
In March 2006 at the Gloucester CdLS conference we had a consultation with Peter Gillet. We gave him Ursula's history and his first question was what medication and what dosage was she on then he asked how long had she been on that dose and and we told him it had been for eight years.
He suggested there was plenty of scope for increasing the medication and suggested that we double it to 20mg twice daily, this we did and saw an immediate change in Ursula, she was happy, enjoying her food and not scratching her face or grinding her teeth.
In August 2006 Ursula had an endoscopy and the result was that her oesophagus was practically normal, a little inflammation but nothing to be concerned about.
The consultant was delighted with the result which was down to the increase in the medication and has made our appointments annual appointments as opposed to 6 monthly.
It did not occur to us as parents until Peter Gillet asked how long Ursula had been on her original dose of Losec that it should have been increased.
People may consider this remiss of us but she was always weighed at her hospital appointments and medication and dosages were always recorded but no one suggested increasing the dosage.
It gave us great pleasure to see Peter Gillet at Cambridge and thank him for his advice.
Ursula had not been well before the conference and we wondered if she was getting the reflux again Peter Gillet suggested giving Ursula 20mg in the morning 10mg at lunch and 20mg in the evening, this we did and she is back to her normal self and her dose of 20mg twice daily.
Reaching Out newsletter
December 2006