Definately need more research
Dec 5, 2012 19:39:49 GMT
Post by Charlie Arnold on Dec 5, 2012 19:39:49 GMT
Dear all,
I hope everyone is ok and trugging along well. sorry I haven't added anything for a while, to be honest I have become a bit disillusioned with this whole sugar malabsorption business as we just aren't getting anywhere with Megan. As I am sure you all have experienced, you think you've cracked it, then you realise you haven't. I am trying to find a better consultant at the moment who has some experience in these conditions as ours so obviously haven't.
But the most glaringly obvious problem I have come across in my research is that very little is known at the end of the day about them as there are so few cases in each area they may never have come across it before. So we really do need to start putting together plans, trusting in our own experiences that others can use to go forwards with their own diagnosis and not end up with having to use trial and error like we have.
So many of these children especially those that have had it from birth or weaning seem to have multiple sugar malabsorptions mainly in the intestines, but which one is causing which.
Meg has just had her lactose tolerance test and although I don't know yet if the hydrogen levels changed I certainly didn't notice any behavioural changes this time. Mind you, I'm still not convinced they are doing it properly as they only get her to puff into the bag. The article I read said they had to hold their breath for 15 seconds then deep breath out, so maybe the hydrogen should build up into the breath that way. If this is the case then how many missed diagnoses have there been. I didn't like to critisize as I had already made a fuss as they weren't aware they were supposed to be taking bloods if she reacted........ Lucky I had a copy of the consultants letter. Like I said, time to change hospitals.
We still continue to stuggle with the school who are convinced Megan has me wrapped round her little finger and is taking unnecessary days off...................... hey ho. I now am going to have to keep taking her to the doctor every time she feels or is sick or drag her into school no matter how she feels and let her throw up on them....................
Anyway, just wanted to catch up with you all, hope everyone is ok.
Charlie
I hope everyone is ok and trugging along well. sorry I haven't added anything for a while, to be honest I have become a bit disillusioned with this whole sugar malabsorption business as we just aren't getting anywhere with Megan. As I am sure you all have experienced, you think you've cracked it, then you realise you haven't. I am trying to find a better consultant at the moment who has some experience in these conditions as ours so obviously haven't.
But the most glaringly obvious problem I have come across in my research is that very little is known at the end of the day about them as there are so few cases in each area they may never have come across it before. So we really do need to start putting together plans, trusting in our own experiences that others can use to go forwards with their own diagnosis and not end up with having to use trial and error like we have.
So many of these children especially those that have had it from birth or weaning seem to have multiple sugar malabsorptions mainly in the intestines, but which one is causing which.
Meg has just had her lactose tolerance test and although I don't know yet if the hydrogen levels changed I certainly didn't notice any behavioural changes this time. Mind you, I'm still not convinced they are doing it properly as they only get her to puff into the bag. The article I read said they had to hold their breath for 15 seconds then deep breath out, so maybe the hydrogen should build up into the breath that way. If this is the case then how many missed diagnoses have there been. I didn't like to critisize as I had already made a fuss as they weren't aware they were supposed to be taking bloods if she reacted........ Lucky I had a copy of the consultants letter. Like I said, time to change hospitals.
We still continue to stuggle with the school who are convinced Megan has me wrapped round her little finger and is taking unnecessary days off...................... hey ho. I now am going to have to keep taking her to the doctor every time she feels or is sick or drag her into school no matter how she feels and let her throw up on them....................
Anyway, just wanted to catch up with you all, hope everyone is ok.
Charlie
