Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Hi Carolyn, How is Nath (do you mind, if I call him that as I'm not very good at typing?) doing? I've been thinking of you guys and wondering whether you got any more help with the acidosis and continuing on the diet. I do hope you got some help from the hospital and dr.s and things are better. Saro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Saro, Thanks to worry about us because I haven't the feeling a lot of persons do...I sent a mail to tell my suffering with aël a few days later and noone respond me...I know I'm the only french one on this group maybe it is more difficult for you to come to me, I feel very lonely... We came back from hospital an other time, I'm so sad to see my little angel with so many seizures all the time. Sometimes it is a bit better but not really. He had a status seizure and doctors put him on gardenal , usually it makes him better at least 48 hours and this time 10 hours later he seizured again...They did him diazepam intra rectal, he seizured again, so they stopped and as he was a bit better they said I can go back home....So we're back home. He's a bit better now, I try to increase the ratio up to 2,5.1 instead of 2.1, I hope he won't go to acidosis again...Doctors said his acidosis is better now... I don't have any numbers about his acidosis... I continue the keto diet but still very difficult alone... Carolyn, aël's mum 6,unknown disease. Carolyn/ ael Hi Carolyn, How is Nath (do you mind, if I call him that as I'm not very good at typing?) doing? I've been thinking of you guys and wondering whether you got any more help with the acidosis and continuing on the diet. I do hope you got some help from the hospital and dr.s and things are better. Saro " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Hi Carolyn I'm sorry if you feel people don't care about you and ael, I know this is not true. I don't have a lot of time, but I have been following your posts when I can and I think about you a lot. I know how isolated it can feel when your child is so unwell and I now realise I should have not just thought about you, but let you know how much you have been in my thoughts as well. Earlier this year my daughter ended up in hospital after weeks of really bad seizures and I was fearful for her life. The emergency meds that were supposed to help her made her worse. Luckily we tried a small amount of Trileptal and it halted the seizures in their tracks. We have got rid of all the other meds and she is only on a small dose of Trileptal at night. She now hasn't had a seizure for over 3 months. I had almost given up hope that this would ever happen. So miracles do happen, so don't ever give up hope! It must be really difficult for you not having any useful support from doctors and hospitals there. I know that feeling of helplessness well. ael is lucky to have you for a Mum because despite the lack of support you are determined to do your best for him and are reaching out for answers. You are a great Mum! What medications is ael on? Perhaps if you could post details of his height & weight and details of his diet such as ratio, protein allowance etc people may be able to offer you some suggestions. The difficult thing is that all our children are so different and respond differently to treatments. Take care of yourself Carolyn, let us know how things are going. And know that you have lots of friends here who are thinking about you and hoping that things improve for ael. Hugs to you and ael Love Jill At 06:07 AM 12/09/2004, you wrote: >Saro, > >Thanks to worry about us because I haven't the feeling a lot of persons >do...I sent a mail to tell my suffering with aël a few days later >and noone respond me...I know I'm the only french one on this group maybe >it is more difficult for you to come to me, I feel very lonely... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Carolyn, I know so well the feeling of being in this nightmare alone, so I'm so very sorry I haven't posted to offer my support to you and ael. Even after dealing with the seizures for 18 months now, I'm still at a loss to offer much advice. We are doing very well right now, but after so many ups and downs, I feel the control we have is tenuous, at best. Claire had such a bad of time of it for many months, so I spend most of my time filling her days with happy times and not so much at the computer right now (she just started Kindergarten, which she loves, and is learning to ride a horse!). Our first stay in the hospital, I feared I would be bringing home a child who could no longer talk or walk and now you can't shut her up or slow her down : ) You're doing the best thing you can do--learning as much as you can here. This and another list helped me trust my own instincts and get my daughter back (I never stop worrying, though, that it will all turn bad again). We're not in the fortunate group of keto dieters who got control soon and easily-it may take a while and some changes to get it for ael, too. I'll keep you both in my prayers. Best of luck, Barbara (mom to Claire) caronath wrote: > Saro, > > Thanks to worry about us because I haven't the feeling a lot of > persons do...I sent a mail to tell my suffering with aël a few > days later and noone respond me...I know I'm the only french one on > this group maybe it is more difficult for you to come to me, I feel > very lonely... > > We came back from hospital an other time, I'm so sad to see my little > angel with so many seizures all the time. Sometimes it is a bit better > but not really. > He had a status seizure and doctors put him on gardenal , usually it > makes him better at least 48 hours and this time 10 hours later he > seizured again...They did him diazepam intra rectal, he seizured > again, so they stopped and as he was a bit better they said I can go > back home....So we're back home. > He's a bit better now, I try to increase the ratio up to 2,5.1 instead > of 2.1, I hope he won't go to acidosis again...Doctors said his > acidosis is better now... > I don't have any numbers about his acidosis... > I continue the keto diet but still very difficult alone... > > Carolyn, aël's mum 6,unknown disease. > Carolyn/ ael > > > Hi Carolyn, > > How is Nath (do you mind, if I call him that as I'm not very good > at typing?) doing? > I've been thinking of you guys and wondering whether you got any > more help with the acidosis and continuing on the diet. > I do hope you got some help from the hospital and dr.s and things > are better. > > Saro > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a > last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Oh Carolyn you are not alone, you might be the only lovely french mamma on here, but we are all in this together. I know from my life I have about 10 mins to check my mail and if stella is having a bad day I don't get to at all. I often think of you and ael and hope you find some peace soon. Do you have the VNS over there? What foods are you giving him? I use a lot of french triple cream brie and cucumbers and make little sandwiches out of them, it uses up lots of cream, then your butter is 85% fat which is great mixed with peanut butter and celery. I hope things improve soon for you. It is so frustrating to not have the medical support you deserve, I feel it on a much lower level than you, but completely relate to the frustrations you must have. Give ael a kiss. -- -mom to Stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa is almost 10 and a happy healthy girl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Dear Carolyn, I'm so sorry you feel not many people are listening to you. When I read your messages I am always on the verge of tears, it sounds so desperate and lonely. I cannot bear to think that you can be trying to cope with all this without the proper medical back-up. You can be sure that everyone who reads on this group will have their stomach churning for you and Nath and so much admiration for your courage. We all wish we could give you some answers. I tried to send you message a few weeks ago but I often find this site will just close down on me without warning, and so it did, just as I was about to send the message. Take care Rose - Mum of Ben Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Carolyn, I'm glad that ael is back home. Are you thinking of increasing his ratio as he is having more seizures at 2:1? I think he has stopped being sick after meals, am I right? I'm sorry I can't think of any helpful suggestions but if you post all his details of age, weight, height and what medicines he's on etc. people may be able to help. This list helped us a lot when we started and the parents here are great so I'm sure you'll get support. Mainly, don't feel you are on your own as we understand and care about ael and you. Sometimes I felt only the parents here who have similar problems understood. Do post all of your son's details regarding AEDs and the diet. Saro....Rohan's mum caronath wrote: >Saro, > >Thanks to worry about us because I haven't the feeling a lot of persons do...I sent a mail to tell my suffering with aël a few days later and noone respond me...I know I'm the only french one on this group maybe it is more difficult for you to come to me, I feel very lonely... > >We came back from hospital an other time, I'm so sad to see my little angel with so many seizures all the time. Sometimes it is a bit better but not really. >He had a status seizure and doctors put him on gardenal , usually it makes him better at least 48 hours and this time 10 hours later he seizured again...They did him diazepam intra rectal, he seizured again, so they stopped and as he was a bit better they said I can go back home....So we're back home. > He's a bit better now, I try to increase the ratio up to 2,5.1 instead of 2.1, I hope he won't go to acidosis again...Doctors said his acidosis is better now... >I don't have any numbers about his acidosis... >I continue the keto diet but still very difficult alone... > >Carolyn, aël's mum 6,unknown disease. > Carolyn/ ael > > > Hi Carolyn, > > How is Nath (do you mind, if I call him that as I'm not very good > at typing?) doing? > I've been thinking of you guys and wondering whether you got any > more help with the acidosis and continuing on the diet. > I do hope you got some help from the hospital and dr.s and things > are better. > > Saro > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Carolyn I am sorry you feel all alone. My geuss is maybe some people don't respond because we don't know what to say. We don't know how to help you so we read the post and feel for you and nathaniel but really have nothing in terms of good practical advice to offer you. I know thats how I feel. But I geuss we should never underestimate the value of just moral support Sure hope things get better for the little fellow soon caronath wrote: > Saro, > > Thanks to worry about us because I haven't the feeling a lot of > persons do...I sent a mail to tell my suffering with aël a few > days later and noone respond me...I know I'm the only french one on > this group maybe it is more difficult for you to come to me, I feel > very lonely... > > We came back from hospital an other time, I'm so sad to see my little > angel with so many seizures all the time. Sometimes it is a bit better > but not really. > He had a status seizure and doctors put him on gardenal , usually it > makes him better at least 48 hours and this time 10 hours later he > seizured again...They did him diazepam intra rectal, he seizured > again, so they stopped and as he was a bit better they said I can go > back home....So we're back home. > He's a bit better now, I try to increase the ratio up to 2,5.1 instead > of 2.1, I hope he won't go to acidosis again...Doctors said his > acidosis is better now... > I don't have any numbers about his acidosis... > I continue the keto diet but still very difficult alone... > > Carolyn, aël's mum 6,unknown disease. > Carolyn/ ael > > > Hi Carolyn, > > How is Nath (do you mind, if I call him that as I'm not very good > at typing?) doing? > I've been thinking of you guys and wondering whether you got any > more help with the acidosis and continuing on the diet. > I do hope you got some help from the hospital and dr.s and things > are better. > > Saro > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a > last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Dear Carolyn Please do not feel lonely,because you are not alone.I am sure everybody in this group feel for you,but probably not very many people know how to help your little angel.I am very sorry to hear you have no medical support there,I hope and pray ael will improve soon.I've been reading every your message and I really do feel for you but I do not really know how to help.I would like to if I could but I am very new myself and do not know much about ketogenic diet.Moreover it is really hard to help when we do not know all details and never saw the child.Hopefully somebody will come up with some suggestions for you after you posted some details. Again,please do not feel lonely. Thinking about you and ael Natasha,mom to 2 years old ph,suspected SMEI/Dravet's syndrome,keto kid since August 23 2004 Quote Link to comment Share on other sites More sharing options...
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