Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 In a message dated 5/6/2004 12:06:14 AM Pacific Daylight Time, JMurraybel@... writes: > CHARGE kids have problems with low blood > sugar? > Yes, Tryny's, normal for him, blood glucose levels are low (usually ranging in the 40's) but for him that's normal. I have to take his glucose levels everyday being on this diet, and I don't usually do anything unless he drops below 36. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 In a message dated 5/6/2004 12:06:14 AM Pacific Daylight Time, JMurraybel@... writes: > CHARGE kids have problems with low blood > sugar? > Yes, Tryny's, normal for him, blood glucose levels are low (usually ranging in the 40's) but for him that's normal. I have to take his glucose levels everyday being on this diet, and I don't usually do anything unless he drops below 36. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 My son n had the exact experience. He was sick and almost coma like from the low blood sugar and actually turned blue and we had to call an ambulance. I didn't know at the time that is what was going on. I thought he had a seizure and I was freaked. After many tests in the emergency room at the San Diego Kaiser they realized it was low blood sugar. We were referred to an endocrinologist and he put n on Cortef and he takes it twice a day. When he gets sick we increase his dosage and if he can't keep the pills down we have injectable on hand in case of vomiting like you had. This all occurred when he was three years old. We did the finger prick blood test like diabetics do with the home machine to regulate and eventually I was able to recognize his symptoms and treat as necessary. If you need more info on dosage I will be glad to get that to you. n is now 13 years old and never misses a dose of Cortef. Sundi n 13yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 My son n had the exact experience. He was sick and almost coma like from the low blood sugar and actually turned blue and we had to call an ambulance. I didn't know at the time that is what was going on. I thought he had a seizure and I was freaked. After many tests in the emergency room at the San Diego Kaiser they realized it was low blood sugar. We were referred to an endocrinologist and he put n on Cortef and he takes it twice a day. When he gets sick we increase his dosage and if he can't keep the pills down we have injectable on hand in case of vomiting like you had. This all occurred when he was three years old. We did the finger prick blood test like diabetics do with the home machine to regulate and eventually I was able to recognize his symptoms and treat as necessary. If you need more info on dosage I will be glad to get that to you. n is now 13 years old and never misses a dose of Cortef. Sundi n 13yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 My son n had the exact experience. He was sick and almost coma like from the low blood sugar and actually turned blue and we had to call an ambulance. I didn't know at the time that is what was going on. I thought he had a seizure and I was freaked. After many tests in the emergency room at the San Diego Kaiser they realized it was low blood sugar. We were referred to an endocrinologist and he put n on Cortef and he takes it twice a day. When he gets sick we increase his dosage and if he can't keep the pills down we have injectable on hand in case of vomiting like you had. This all occurred when he was three years old. We did the finger prick blood test like diabetics do with the home machine to regulate and eventually I was able to recognize his symptoms and treat as necessary. If you need more info on dosage I will be glad to get that to you. n is now 13 years old and never misses a dose of Cortef. Sundi n 13yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 Hi Elaine, Ellen has always had problems with hypoglycaemia. This is due to a combination of things. Mainly she has problems when she has a big infection (as Jack has) but also because of her feeding difficulties and the limitations on the sorts of foods she can tolerate. Infections problems are usually dealt with by IV, but the episodes she has when " well " have been more difficult. We've learnt to recognise when an attack is coming on as she'll go the way diabetics do. Suddenly, unreasonably cranky, pale, sweaty and sometimes a bit disoriented. It'll come seemingly out of the blue, but if we check, we'll usually find that she's substantially overdue a feed for some reason. What we do is...give her a small quantity (say 50 mls) of a low GI fruit juice (say fresh apple juice), then start her feeds, slowly. This seems to work. We've found that a large quantity of juice or feed will start vomiting, but this may just be Ellen as she has severe dumping syndrome and can't tolerate sugars at all well. To keep her on an even keel, we find it's best to have her pump feeds going at a slower rate for a longer time, and to encourage her to try to get in small amounts of the things she can tolerate during the day. Silken tofu is wonderful as it's easy to swallow, doesn't affect the dumping and is nutritious. Another good one is oat milk if you can get that. It is pleasant to drink, has calories that aren't based on sucrose but isn't so dense that it causes dumping. Hope this is of some help. Jack's issues are hopefully just related to his bad infection and will go away once he is recovered. Regards, Marea Howe Hypoglycaemia > Hi All, > I just wondered how many of our CHARGE kids have problems with low blood > sugar? > Jack has been very unwell since last Friday. He had vomited constantly and > was very lethargic and unresponsive on Sunday so we took him to the GP who > referred us straight to the paeds. His blood sugar was only 1.7mmol so they gave > him bolus dextrose & put up a drip (when they eventually managed to get a > line in). This helped enormously and he was more responsive. His CRP level was > 133 so there seemed to be an infection going on somewhere and it turned out to > be another UTI. Anyway we were back up on Tuesday as they wanted to review > him and his own paed wanted BM's taken 2 hrly. They were 3.2, 4.1, 4.2.She is > still not happy with this as even though the second 2 are within normal > limits they are still on the low side. Also he is tolerating 1/2 amounts of bolus > 2hrly but not his overnight pump feed at 1/2 rate I have to phone again > this afternoon as they will have full culture & sensitivity results from his > urine samples on Sunday and Tuesday. > Anyway, just really wanted to ask if your child does have problems with > hypoglycaemia how were they detected and how do you monitor it etc. > Thanks in advance > Elaine, mum to Elise (11yrs) & Jack (6yrs) CHaRGE > Scotland > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 Thank you to everyone who replied about this. Hopefully it has just been a one off with Jack due to the UTI but I'm beginning to think it has maybe been a slight problem for a while now as there does seem to be signs that I hadn't recognised He had been on a low dose of Growth Hormone but this stopped in December last year. He is not actually GH deficient but they gave him a trial to see if it helped his growth. It did initially but it had levelled off so we decided to stop it and see what happens. He is due to have lithotripsy at the end of June to remove his kidney stones so it will be important to know what's going on before then as I don't want him fasting too long if his blood sugar is going to be a problem. Thanks again. Elaine, mum to Elise (11yrs) & Jack (6yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 Thank you to everyone who replied about this. Hopefully it has just been a one off with Jack due to the UTI but I'm beginning to think it has maybe been a slight problem for a while now as there does seem to be signs that I hadn't recognised He had been on a low dose of Growth Hormone but this stopped in December last year. He is not actually GH deficient but they gave him a trial to see if it helped his growth. It did initially but it had levelled off so we decided to stop it and see what happens. He is due to have lithotripsy at the end of June to remove his kidney stones so it will be important to know what's going on before then as I don't want him fasting too long if his blood sugar is going to be a problem. Thanks again. Elaine, mum to Elise (11yrs) & Jack (6yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Hi Elaine, Pretty late catching up on posts as we had a Yahoo problem so just read about Jack. I am afraid I have no words of wisdom but just wanted to say sorry to hear you/Jack are having a rough time of it. Poor little guy, hard to imagine him lethargic with his huge personality. Hopefully, things are a little more settled now? All the best... Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Hi Elaine, Pretty late catching up on posts as we had a Yahoo problem so just read about Jack. I am afraid I have no words of wisdom but just wanted to say sorry to hear you/Jack are having a rough time of it. Poor little guy, hard to imagine him lethargic with his huge personality. Hopefully, things are a little more settled now? All the best... Flo Quote Link to comment Share on other sites More sharing options...
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