Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 It seems like the good old UK are behind with everything - and I did leave your swearing in!!! Don't worry though, my dietician is so used to me that it would probably seem mild!!!! I tend to let off steam a little at times about the backward thinking there is in this country about the diet! I have to admit that I don't know when this extra 1.5cm occurred, the only thing that I have noticed is that is younger sister Alice who is 21 months younger than him is practically as tall as him. I have noticed this for a while now, but when he has had follow ups we really haven't tackled that subject and he had seemed to be doing so well and not having seizures it was along the lines of not 'rocking the boat' with anything. Because was effectively off the trial - the local dietician would not take him on and he did not have a local consultant - so I got to see our trial dietician and consultant once every 6 months because they were not going to leave me completely in the lurch. His weight has not fluctuated very much over the past year - maybe only going up .3g at times and then going back down - this is the biggest drop (or weight movement of any kind) we have had in a year. I know that growth can slow down on keto kiddies, so I presumed that that is what was happening and the fact that was doing so well otherwise I didn't worry too much and his dietician and consultant were happy with things as well. Boy, has that changed now!!!! I will be weighing and measuring him at least 1 a month if not twice (I know that the Keto book says fortnightly) and I have gone back to keeping a daily diary. I did stop doing this after the trial was finished and only put things in that were important such as things he was doing and when there was a change in ratio etc. I do feel that maybe I should not have been so complacent - whenever he had more seizures I would also check everything and he went to all his appointments etc and if I was concerned about anything I would always speak to his dietician - but this I just was not expecting or even thinking of. The guilt is setting in now - I had noticed he wasn't getting taller but he was doing so well and was bright and happy etc, all the time with a ticking timebomb ready to go off. Not a mistake I will be making again. Urrrrgh - I am so angry at myself for not pushing the fact harder that he had not grown. ended up having 3 seizures last night but with no meds - so that is an improvement on the night before (half of me is not wanting to write this in case he goes nuts again tonight) I will be monitoring him again tonight (sleep, what is that?!) Thanks again - you are a star! Emma. - Mum to a brighter today. P.S. We have had a lady that has come onto s Friends site from Wellington in New Zealand whose child has been on the diet for 7 years! She is called and she says that she is excited about talking to other families about the diet as she feels that she is on her own - 2 of us so far have replied to her and said that she has a wealth of knowledge in New Zealand - namely YOU!!! We have pointed her over to this site as well - so keep a look out for her. > Ugh - why no ree dx? Hard to comprehend that little ole' New Zealand has > these machines available and a UK hospital doesn't? > But that weight loss in a (supposedly) growing boy is a def red flag, so I > guess that will have to do for now as far as clues go. Our endo said that > even a weight standstill is equivalent to weight loss in a child, so one > step past that and actually seeing a def weight loss on the scales with > may mean even more so that there is (and poss has been for a while) > a def problem there. > How does that 1.5 cm height growth in the past year compare to non keto > kids on a growth chart? Like is his age one where he would normally have > shot up at this stage? Do you have any idea at what rate the 1.5 cm growth > was over? Like did he grow that much say Jan-Apr then stop altogether, or > has he gradually very slowly been inching up all the time? > 400 cals does sound like a very big increase, but I guess time will soon > tell....We had to do 300 cals all at once too after seeing 's ree dx > results though, and he was younger and smaller than , so hoping again > that it is a step in the right direction for you guys as well. > > > PS - No of course I don't mind you forwarding on any emails, er, as long > as you deleted any empathatic swearing that might have slipped in > > > ----- Original Message ----- > From: " ketomum68 " > > > Can't get a ree dx test - they don't do them for this kind of thing > > over here, but I have managed to get to see a local consultant this > > afternoon and he turned out to be lovely (thanks for the > > recommendation Val - you were right - he may not have a lot of keto > > experience which he freely admits to - but he listens and basically > > asked what I wanted him to do! now has a local consultant > > which is a first for about 3 years and I feel that I have a bit more > > support which is good). > > > > Height and weight were done again - has grown 1.5cms in the > > past year (or even less as is not great at standing up > > straight and fidgets!) His weight was done on the 8th July and he was > > 33.65kgs, today he was 32.4kgs. The extra calories do seem to be > > needed. Bloods were also taken today and everything is being > > checked, his blood gases results I have already and all are fine, the > > rest of the results I will get tomorrow as the consultant is going to > > phone me to let me know (unbelievable I know, but he really is a gem). > > > > I have spoken to his dietician again today and we are going to keep > > his calories at 400 extra for the time being and see how he goes. It > > may be that we will need to reduce them a little in time but we will > > have to see how it goes. > > > > She was very interested in what you had to say and I hope you > > don't mind but I forwarded to her the messages you have sent me and > > she is going to discuss them with the consultant next week - she is > > very good and is open to gaining all the knowledge she can as well. > > > > You have been an absolute star and I cannot thank you enough. > > I know that I am not out of the woods yet with but I think > > you have put us on the right road. > > > > Thank you everyone for your support - you have really helped me get > > through the past few days - I HOPE is recovering now - but > > time will tell on that one. > > > > Love and Prayers to you all. > > > > Emma. Mum to - who is hopefully getting better! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Banish the guilt and anger Emma - like I said last night, 20/20 hindsight and live and learn, it is not a common scenario and not one that most would be on the look out for. I felt that too initially though, hell I have felt it with just about everything I think that has gone wrong with 's treatments over the years fullstop, but we'll end up as little balls curled up on the floor if we don't let things like that go How is he doing now? Still improving? Keeping everything crossed for you. Will def keep a lookout for from NZ, and will try and pop into s friends later on this afternoon and see if I can log in to send a message, er, do we log in to do that btw? I saw the various forums, but wasn't sure if you had to be a member to say anything? Be gentle with me, pute techie, I am not..... ----- Original Message ----- > The guilt is setting in now - I had noticed he > wasn't getting taller but he was doing so well and was bright and > happy etc, all the time with a ticking timebomb ready to go off. > Not a mistake I will be making again. Urrrrgh - I am so angry at > myself for not pushing the fact harder that he had not grown. > ended up having 3 seizures last night but with no meds - so > that is an improvement on the night before (half of me is not wanting > to write this in case he goes nuts again tonight) I will be > monitoring him again tonight (sleep, what is that?!) > > Thanks again - you are a star! > > Emma. - Mum to a brighter today. > > P.S. We have had a lady that has come onto s Friends site > from Wellington in New Zealand whose child has been on the diet for 7 > years! She is called and she says that she is excited about > talking to other families about the diet as she feels that she is on > her own - 2 of us so far have replied to her and said that she has a > wealth of knowledge in New Zealand - namely YOU!!! We have pointed > her over to this site as well - so keep a look out for her. Quote Link to comment Share on other sites More sharing options...
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