So yesterday was a long day. We four were up at the crack of dawn ready to leave for London as Tom had finally been referred to the Feeding Clinic at GOSH (Great Ormond Street Hospital). Although the whole family was convened, Zack is still at school, and given his residential status, we all felt that his presence was not essential. And honestly, given Zack and Kesia's ability to cope with new situations, taking one of them only was a relief.
The first thing I have to say is that rail travel is EXPENSIVE!!! And my beloved family railcard is useless as you can only use it after 9:30am. So much money later, we caught our train just in time with dozens of other commuters. I can only praise Tom and Kesi, for they behaved beautifully. By the time we reached Clapham Junction, Kes was suffering from the crowd somewhat, but handled herself beautifully.
Once we had had a quick breakfast at the hospital canteen, we headed up to the CAMHS department (child and adolescent mental health services... I normally attend our local one, but the feeding clinic is part of GOSH's CAMHS... you gotta love those acronyms!!). Funny, despite having been really stressed up to arrival, I went into hospital mum mode: all practical and coping. Tom was weighed and measured (sigh, some weight loss), he and Kesia were led to the best hospital playroom you have ever seen: loads of space, two huge children's tables, a climbing frame, a water play circuit... and that's only what I took in at first glance! Nick and I shuffled into a distinctly more boring consulting room to begin a two and a half hour interview...
I do cling to some hope that this will turn out to be helpful, but I can't escape the fact that this service deals with behavioural and psychological issues, and that the medical is not their remit. I am feeling a little sceptical of their ability to open any medical doors needed to help my little boy with the fundamental cause of his feeding problems.
There's not a great deal to say just now about how the interview went. Two psychologists took copious notes as I answered their questions (Nick did a really good job of corroborating and supporting, despite feeling less than helpful). They will then hand all this out to various "ologists" and I will be given feedback next Friday. I find it very difficult to separate the children, and given that this service could do so much to help Kesia, keeping the focus on Tom was difficult for me. The more hopeful side of me wonders if they will have any advice for me about helping her...
My little girl found the day very hard... being in a strange place was no fun, and she did need to come and check in on us a few times. To the point that when lunchtime came, she found she was unable to choose anything from the menu...
We chose for her, and I'm glad to say she ate her fish fingers and chips nicely. Tom actually did very well. He refused his first plate of food spectacularly (unfamiliar food), hiding uder the table, crying, pushing the plate away etc... and categorically not touching ANY of the food on it. His second plate (chips) went down really well - some of his best work in fact! The third of four plates was finger food, with various crisp types, a biscuit and some chocolate buttons. He was feeling a little off by this time, but did eat the chocolate. The fourth plate was jelly and ice cream, and he LOVED the jelly. Gently coaxing was not enough to get him to sample the ice cream however. Both the kids loved the "magic room"... all we needed to do was wish out loud for something and it would be brought in: salt and vinegar, ketchup, the next course all arrived with oohs and ahhs of glee from Tom and Kesi. I think we did well, and it was as normal a meal as such a thing can be. We all had a good giggle when Kesi loudly and clearly asked, "Please could I have a kitten?... NOT cooked!".
After which it was time to go! A good dose of Aspie stress meant that Nick was feeling quite unwell by this time and we decided against an afternoon outing. This was confirmed when Kesi just shut down suddenly as we left the hospital. Crying and complaining of exhaustion, it took all our patience and gentle care to get her to her feet and moving. We decided to walk back to the station which turned out to be a wonderful decision. It was a beautiful day, and we all loved the walk across the river, pointing out the well-known buildings. It must be said that Kesia is very happy to call herself a country girl, and was delighted to get away from the big city with all its loud noises and horrid smells!
So now we wait... In a week I will go back and listen to what all these "ologists" think and what advice they have to give... Stress is still intrinsically tied to food here as each meal is a little mountain to climb. Tom, I do not worry about in spite of everything: I know that I can keep his health stable and his weight acceptable thanks to the tube. Kesia worries me so much. She herself acknowledges that her eating is not good at the moment. It has become rare for her to bring home an empty lunchbox, and she does not often finish her meals at home. I will be calling her therapist next week to relay this information and I have spoken to the GP. I am coming against the usual reaction: "children do not grow continually, it is normal to have times of lessened eating or growth, don't worry so much, her bmi is in the healthy range...." My answer (which I could not give in Kesi's presence...): "she has been losing weight since September, she is eating and drinking very little and has only grown a few millimetres since July, her history gives me real cause for concern, bmi is NOT an adequate measure of health for a child at risk of an eating disorder". I just want to avoid the crisis point which will tip her into anorexia. PLEASE! I know that food is probably always going to be a point of weakness for her, but we should be able to steer clear of the hellhole that full-blown anorexia is. Should. IF the various people helping her listen to me.
So first we deal with Tom, who
The first thing I have to say is that rail travel is EXPENSIVE!!! And my beloved family railcard is useless as you can only use it after 9:30am. So much money later, we caught our train just in time with dozens of other commuters. I can only praise Tom and Kesi, for they behaved beautifully. By the time we reached Clapham Junction, Kes was suffering from the crowd somewhat, but handled herself beautifully.
Once we had had a quick breakfast at the hospital canteen, we headed up to the CAMHS department (child and adolescent mental health services... I normally attend our local one, but the feeding clinic is part of GOSH's CAMHS... you gotta love those acronyms!!). Funny, despite having been really stressed up to arrival, I went into hospital mum mode: all practical and coping. Tom was weighed and measured (sigh, some weight loss), he and Kesia were led to the best hospital playroom you have ever seen: loads of space, two huge children's tables, a climbing frame, a water play circuit... and that's only what I took in at first glance! Nick and I shuffled into a distinctly more boring consulting room to begin a two and a half hour interview...
I do cling to some hope that this will turn out to be helpful, but I can't escape the fact that this service deals with behavioural and psychological issues, and that the medical is not their remit. I am feeling a little sceptical of their ability to open any medical doors needed to help my little boy with the fundamental cause of his feeding problems.
There's not a great deal to say just now about how the interview went. Two psychologists took copious notes as I answered their questions (Nick did a really good job of corroborating and supporting, despite feeling less than helpful). They will then hand all this out to various "ologists" and I will be given feedback next Friday. I find it very difficult to separate the children, and given that this service could do so much to help Kesia, keeping the focus on Tom was difficult for me. The more hopeful side of me wonders if they will have any advice for me about helping her...
My little girl found the day very hard... being in a strange place was no fun, and she did need to come and check in on us a few times. To the point that when lunchtime came, she found she was unable to choose anything from the menu...
We chose for her, and I'm glad to say she ate her fish fingers and chips nicely. Tom actually did very well. He refused his first plate of food spectacularly (unfamiliar food), hiding uder the table, crying, pushing the plate away etc... and categorically not touching ANY of the food on it. His second plate (chips) went down really well - some of his best work in fact! The third of four plates was finger food, with various crisp types, a biscuit and some chocolate buttons. He was feeling a little off by this time, but did eat the chocolate. The fourth plate was jelly and ice cream, and he LOVED the jelly. Gently coaxing was not enough to get him to sample the ice cream however. Both the kids loved the "magic room"... all we needed to do was wish out loud for something and it would be brought in: salt and vinegar, ketchup, the next course all arrived with oohs and ahhs of glee from Tom and Kesi. I think we did well, and it was as normal a meal as such a thing can be. We all had a good giggle when Kesi loudly and clearly asked, "Please could I have a kitten?... NOT cooked!".
After which it was time to go! A good dose of Aspie stress meant that Nick was feeling quite unwell by this time and we decided against an afternoon outing. This was confirmed when Kesi just shut down suddenly as we left the hospital. Crying and complaining of exhaustion, it took all our patience and gentle care to get her to her feet and moving. We decided to walk back to the station which turned out to be a wonderful decision. It was a beautiful day, and we all loved the walk across the river, pointing out the well-known buildings. It must be said that Kesia is very happy to call herself a country girl, and was delighted to get away from the big city with all its loud noises and horrid smells!
So now we wait... In a week I will go back and listen to what all these "ologists" think and what advice they have to give... Stress is still intrinsically tied to food here as each meal is a little mountain to climb. Tom, I do not worry about in spite of everything: I know that I can keep his health stable and his weight acceptable thanks to the tube. Kesia worries me so much. She herself acknowledges that her eating is not good at the moment. It has become rare for her to bring home an empty lunchbox, and she does not often finish her meals at home. I will be calling her therapist next week to relay this information and I have spoken to the GP. I am coming against the usual reaction: "children do not grow continually, it is normal to have times of lessened eating or growth, don't worry so much, her bmi is in the healthy range...." My answer (which I could not give in Kesi's presence...): "she has been losing weight since September, she is eating and drinking very little and has only grown a few millimetres since July, her history gives me real cause for concern, bmi is NOT an adequate measure of health for a child at risk of an eating disorder". I just want to avoid the crisis point which will tip her into anorexia. PLEASE! I know that food is probably always going to be a point of weakness for her, but we should be able to steer clear of the hellhole that full-blown anorexia is. Should. IF the various people helping her listen to me.
So first we deal with Tom, who
RSS Feed