I'm agonizing over our next visit to the hospital, next Monday. I woke at 5 am this morning and couldn't get back to sleep. Research on the internet for information is frightening and frustrating. I already know about Crohn's disease in general terms, and I have a lot of notes about the various treatments and the alternatives. None of them seem very good - most people relapse, and many need surgery for strictures and obstructions. (/p)
(p)A had a colonoscopy five weeks ago, and biopsies were taken which identified Crohn's as the disease he has been suffering from for the last 18 months. He has been on a liquid diet since the colonoscopy - not easy for a 12 year old. But I have been proud of him and the way that he has managed to follow the diet. He has even been cooking for the rest of us, as cookery is, cruelly, one of his favourite activities.(/P)
(p)When we went to the hospital a couple of weeks ago, his blood tests showed that things were moving in the right direction - his inflammation rate was down to normal again, his weight and blood iron rate were moving up. Even so, the consultant said that he would only agree that his Crohn's was in remission if the next colonoscopy on November 1 showed that all the inflammation was gone, AND the biopsies showed that there was no active Crohn's in his colon. (/P)
(p)He said that even if he appeared to be better, even if his blood results remained good, if there was active Crohn's he would advise prescribing a steroid.
(p)When I was in the room with the consultant, it all seemed to make perfect sense, but when I was recounting the conversation to my husband, and later to a friend, it no longer seemed to make sense. If he is improving, why would we want to add in an aggressive treatment like a steroid, which carries all its own side effects and risks? If he is improving why would we want a second colonoscopy, the first having been very distressing (although A was sedated not to remember the pain he suffered)?
(p)The consultant said that at A's age, the disease could be just as damaging as the steroids, but that isn't what I have read - the research I have seen indicates that the growth retardation of the disease is reversible, while that of the steroids is not.
(p)I am dreading the next appointment, because I don't feel I am good at challenging the doctors, and I know that my husband isn't. As a fellow professional (he's a solicitor) he has a very deep regard for the professional training of doctors. Even though this nearly killed him a couple of years ago. (Our local hospital admitted him for a bowel obstruction, and then ignored him for 10 days, dehydrated him so effectively that his kidneys stopped working for a while, and generally tried their best to finish him off on a number of occasions.
(p)Even when I demanded that a doctor should come and examine my husband, the junior doctor who came made comments like "Do you have any medical training, Mrs B?" When I remonstrated with him and said that no-one had examined my husband for days he said "I am here, I see him." I really lost it at that point and said "You know that seeing him is not the same as a proper examination. I'm very concerned about his condition, he has been deteriorating every day and no-one seems to take the slightest notice." He examined him, and suddenly everything was urgent and an emergency - although it still took them some 30 hours to get him into surgery.)
(p)I find that my son's diagnosis has sent me straight back to that time, and also to the time when he was my first baby, a time when the responsibility that was vested in me as his mother was almost overwhelming. I saw in his deep dark eyes that he trusted me, expected that I knew what I was doing, and I didn't!
(p)Meanwhile, life goes on, and I have the same stuff to deal with as usual. Not enough money, the endless, endless questions about why I am home educating. You'd think after three years that this would bother me less. I begin to think I should be like those snappy people who turn up on the web support lists, who simply roar "Mind your own business!" when asked why little Amy isn't in school.
(p)Yesterday I slipped out of the house leaving my husband in charge. A friend trades in Traidcraft and Tearcraft products, and every year at about this time she has an open day for people to order or buy Christmas cards and presents. The children normally go, but they all have stinking colds, and as J was around, I decided to go on my own. Where in previous years I have built up a huge order and paid by cheque, I raided J's wallet and only bought what I had the cash to pay for.
(p)I was enjoying my time away from the house - I was given a very pleasant cup of coffee, and she always bakes a lot of cakes and biscuits for this event, so I had a cube of ginger cake too, free, but with a donation to the world hunger fund if desired. I was enjoying them when a woman I have met on previous occasions came over and asked where the children were. I explained they were bunged up with a stinking cold, and no doubt infectious. She then began to browse on the table next to my chair and suddenly turned to say "What will you do about secondary education?"
(p)I replied that I intended to carry on home educating. "But what about physics? Chemistry? all those other subjects which schools offer?" I said that the children don't seem that interested in physics, although actually, thinking about it we have done quite a lot about magnetism and gravity. We have chemistry sets and have done some chemistry. I tried to explain that I think of things in such a different way now, that I regard education in its original sense as drawing out gifts and qualities from the child, and not filling them up with facts and figures.
(p)All the time I was really quite resentful. I shouldn't dream of approaching another parent and demanding to know why they have sent their children to a particular school, or to know how that school manages to teach independence of mind when all pupils are taught in the same way, or independent research when groups of pupils must work together in order to share out researces and time. Or why schools only measure academic performance, when the adult world requires so much more than this - creativity, innovation, initiative.
(p)I read the Times Educational Supplement (TES) each week, and was interested recently to see that Richard Rogers, the architect, didn't read until he was 11. There is a new test for teachers to give to children who aren't performing well academically, which tests their spatial awareness, as this was the area in which Rogers was a genius. It seems that many children with dyslexia and problems with literacy may have hidden talents for spatial awareness. Although what they will do with the information if teachers discover hoardes of children with a genius for spatial awareness is anyone's guess....