BiographyTheo made rather a dramatic entry into this world 4 weeks early in October 2008… right from the start we knew he was trouble and would never take the easy road in life and we were apparently right!
Right from the start we had issues with his feeding and by 3 and a half months old we were referred to a local paediatrician who diagnosed Reflux. By 8 months old Theo’s problems had worsened dramatically and he was vomiting copiously, had cut out his solids diet and barely touched milk. He was put on a high calorie milk but he could only manage a tiny amount which would quickly resurface across the room. At this point he was referred to a surgeon in Leeds and when he was 10 months old he underwent a Nissans Fundoplication and had a gastrostomy placed. Everyone thought this should have been our cure, that our problems would be solved… well they weren’t, in fact, his issues seemed exacerbated.
His symptoms gradually worsened and in March 2011 he was diagnosed with multiple food protein intolerance and had a large amount of the food groups removed from his diet by his doctor. Theo still continued to deteriorate and his symptoms worsened. He suffered from severe bloating, reflux, facial rashes, facial swelling, problems with his bowels and vomiting bile.
In August 2011 Theo was referred down to Great Ormond street hospital and in November he was seen for the first time. Theo had scopes in December and commenced on steroids in January 2012. Unfortunately he didn’t respond to the steroids and was admitted to our local hospital in February. They tried various treatments but Theo continued to worsen and lost a lot of weight so in March 2012 he went to Leeds and had his gastrostomy changed to a gastro jejunostomy and they removed foods totally from his life.
Throughout this time Theo took everything in his stride and continually charmed all who came into contact with him, his bravery was amazing. He commenced on jejunal feeds and did well initially but then the inevitable happened and he went downhill again, he continued to lose weight and his hair began to fall out.
In June he was yet again admitted to Great Ormond Street and went through a set of tests which really were terrible for both him and for me to watch. These tests showed he had problems with his gut motility and they arranged for him to go back in September for a test which required surgery. Unfortunately Theo didn’t do well post operatively and required total parental nutrition for a short time to boost his system while they built a modular feed through his jejunal feed. They eventually managed to wean him off tpn and get him onto full feeds down his tube. A supposed few day admission had turned into 6 weeks but we walked away with a diagnosis and now knew Theo suffered Chronic Intestinal Pseudo Obstruction and has Eosinophilic gut disease underlying.
Currently things aren’t going well for Theo and his health is deteriorating further, we have been in our local hospital recently and are now awaiting to see our doctor at Great Ormond Street. We are hoping for a new plan for Theo.
Theo is an amazing little boy and with lots of love, laughter and cuddles, and we do our best to embrace life between the hospital admissions and appointments.
Added ....
The last time we updated we were waiting on an appointment with Theo’s consultant at Great Ormond Street. We went at the end of April and unfortunately the news isn’t good. The doctor was very unhappy with the state of Theo’s gut and the amount of distention he is getting. He also felt the level of Theo’s pain was unacceptable. The upshot of the appointment is that Theo requires a long term admission to Great Ormond Street to try to help him and his issues. Though this is gutting, as we are so far away when we are in there, it comes as a relief that they are going have him in and make a new plan of action.
While we are in Theo will have a new gastrojejunal tube placed as his isn’t in a good way and also have upper scopes and biopsies done and then the rest is in the hands of the doctors there.
So we wait… we wait for an admission date and a bed to be available and while we wait we continue to plod on and try to keep Theo as well and comfortable as possible.
Further update....
Theo has an admission date of the 8th july... Things have been very tough for Theo and i have no idea how our gorgeous boy keeps such a beautiful smile on his face....
|
