Is there anyone, particularly in the UK who has this with their child as I am finding it hard to deal with and could do with someone else who could give me some pointers and support. Obviously would welcome anyhelp at all from anywhere in the world. Thanks :-)
Thanks. Am seeing the Consultant on Wed next week. It seems that we just have to get on with it and manage it with diet. Ketotic Hypoglycaemia is his diagnosis and some kids just get it. The grow out of it by the age og 7 or 8. Got 5 years to deal with it. Its so hard as hes not eating much and his BS are bordering on 3.5- 4.9 mmol if I am lucky.
I have a set of ketotic Hypo twins, they have had a confirmed diagnosis. They both are under St Thomas's. At first they thought it was a different condition - VLCAD and it is definately not diabetes. I am happy to give you any advice as to controlling this overnight. We leave our daughters sugar juice (ribena) for the night, and if they wake offer it to them. In addition, they have a box of their favourite biscuits to snack on, for when they get up in the morning.
We also carry dextrose tabs just incase, and if they are unwell, with temperatures or such like we have a special emergency food regime we follow, where they are giving a glucose drink - Maxijul, provided by the doctor.
It is so scarey to watch your child glaze over, go pale, get really tired and also mine, complain of feeling sick.
But if you have not been to the doctors, you need to go to be refered to a paed, so that they can rule out everything else. Ours had skin biopsys taken and genetic tests were carried out to establish what was going on.
Hi, I am in the UK with, my soon to be 7 yr old daughter was diagnosed in 2007, It's not a pleasant thing to see your child go through, she's been hospitalised 3 times due to this on two occassions she had a fit and was unresponsive, had MRI & EEG done it was a nightmare, but the good news is that they outgrow it at ages between 8&9 until then you just need to know what to do to manage it, I do pretty much what Twinsnikki suggests myself, we keep Glucose lozenges at hand, made sure they drink enough and don't go through long periods without eating etc, My daughter usually gets an episode if she has some viral infection or gastro problems, she will be sick and won't keep any food down, at this point I usually panic as she needs her food so that's qwhen Dextrose helps in that situation where I would give her something like Lucozade and the like, in her lunch box i make sure to pack extra healthy snacks like glucose biscuits, a fruit, yogurt etc. The most important thing it so make sure they do not fast for long and keep fluids around, always have some juice at hand as well, I normally give my daughter her breakfast within an hour of waking up and would give a drink at intervals etc. Good Luck to you, once you understand it, it's not hard to manage and once you do that you will feel so much better.
Hi - how's it going with the ketotic hypoglycemia? My daughter (almost 3) has just been diagnosed by St Thomas' as having ketotic hypogylcemia and my youngest (18 months) is pending more tests. My eldest goes 'floppy' when ill and not eating properly - we have had 3 episodes before we have started to understand what it is. She has been given an 'emergency regimen' with maxijul. The first episode was with vomiting - the more she was sick the more she lost consciousness, the subsequent two just with colds. Am worried about when she gets a sickness bug and what will happen to her. Have you (or anyone out there!) experienced this? There don't seem to be many people out there with children with KH and no support groups I can find. Would love to hear from someone who has or is going through this stressful condition
Hi - my 2.5 year old daughter is probably going to get diagnosed with this in the next few weeks - we have had 2 episodes and it's only through speaking to GP friends and googling I have found out what this is likely to be. She has all of the symptoms of KH down to a T so I am pretty sure that's what it is. It's very scary.
Just been googling KH. My 4 yr old son has just been discharged from hospital today after two KH seizures. He originally had very low BM's at birth and was in neo-natal care until they stabilised. He then became ill with Norovirus (sickness bug) at 22 months oldand that is when we first experienced a full seizure due to low BM's. He hadn't eaten before bed due to the sickness, my partner decided to sleep in his room to keep an eye on him and woke at 6am with him making strange noises, jerking and being unresponsive. He was rushed to A and E where he was treated with intravenous glucose which did the trick. After a 4 day stay and many tests, they came up with the KH diagnosis. The recent episode started the same way-vomiting due to bug, no calories before bed then seizure early hours. We treated him ourselves with Glucogel (provided after the 22 month diagnosis) which brought himround a little til the paramedics arrived. He crashed again in hospital and had to be given IV Glucose-this is the only thing that would bring his sugars back up as they had plummented to 1.1. It is so scarey to deal with. We were also given a shot of Glucagon to give him when he fits until medics arrive but it was so difficult to administer we could not manage it. The consultant who dealt with our son this time suggested keeping Lucozade for periods of illness and most of all dialling 999 straight away as we have now seen on 2occasions that BM's plummet so low so quickly that IV Glucose isi the only way to treat it. Good luck. xx
my 3 year year old son has been diognosed with kh. his foirst episode happended about 8 months ago, he was unconcious so we rushed him to hospital and his bm was 1.2. since then we have had an episode twice every week atleast to which we administor glucogen gel. we have the injection in the fridge but have yet had to use it thankfully. my son seems to have it quite bad and reoccurent episodes have proven to be part of everyday life now. i struggle to cope in the fact i feel like every day all i think about is his diet. its a constant worry. he is on cornstarch in the evening and that seems a bit hit and miss still. we are under great ormands street and have a follow up next monday. think we are going to have to discuss tube feeding as he is unable to eat during the night but is needing to. i feel so helpless and it really gets me down. ive applied for dla due to the fact that my sons food bill is simply ridiculas as he eats from the moment he wakes. i have an emergancy rageme that i have to use also. there isnt alot of support out there and i find that alot of people dont really understad how hard it is. good luck to all ur children xxx
We have an 18 month old and 6 year old with KT. 18 month old did the ICU trip at birth and came out of it after about a week.
Have you guys had any hormone testing done? Maybe common Google info, but in severe cases, there are deficient human growth hormones that exacerbate the KH. The test takes about five hours and is outpatient. Just fasting during the test. The hormone deficiency is a bigger deal than causing KH -- and its affects will get worse over time (a major deficiency)
Other than that, our docs said the second a meal is missed because of illness or vomiting, to head to the ER to spare ourselves midnight drama. Our magic window is 10 hours. Longer than that and it's off to the hospital.
Hi, iv just found out that my 18 month old son also has kh, he had a fit that lasted 5 minutes then another fit 2 days later that lasted about 1 minute, im scared that this will happen again the doctor at hospital has not explained anything to me all he has done has gave me a blood checker and told me to check his blood every 4 hours when hes ill and to give a tube of glucose gel if it goes below 1.7 and get him to hospital, im so worried im a single mother and live 100 miles away from my family any advice would be lovely thankyou x
We have a 5 year old who was diagnosed with KH when she was 3. Tests in Gt Ormond St and now just managed with diet. I find it stressful knowing whether she has eaten enough and school are supportive by giving extra snacks but if they forget she is very irritable after school until she has a sugary drink( Ribena usually). Just come home from Gt Ormond st with my 18 month old who we suspect also has it, he's had tests and been fasted for 18 hours to watch the sugar levels. Won't find out results yet. They don't know loads about it yet and want to know more. Hereditary condition and my nephew has MCAD (another more serious metabolic disorder) so it definitely runs in the family.
We speak to a dietician each time we go for a check up and I am currently looking into buying a book about the Glyceamic index as low GI foods are slower release and will help.
Good luck with it.
hi just read you post yes i think ourr sons who is 2 1/2 years old has this problem were he has been rushed to hospital with in last two weeks we live in uk and happy to chat about advice we have been give and what plans are set up on his release from our local hosp if you wish to have a chat
My son is 2.5, he's been vomiting in his sleep which wakes him up. He only does this while he's sleeping. No fever, acts perfect during the day. He's small for his age, and has no appetite at dinner. I've been trying to figure out why he's only puking in his sleep. Covers his entire pillow and sometimes more. Woke me up a few hours ago puking, but back to sleep now. I'm beginning to think this is what he has ketotic hypoglycemia. Will be getting him checked out bc this is the 3rd night.
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