Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 , I'm so sorry to hear about Caden still being ill. I'm sure that must break your heart. I'm curious, have you tried Cimetidine yet? Again, it doesn't work for everyone, for some...not at all, but some kids have seen complete relief with it. Also, I'm sure you've done all the other genetic tests, but if not, don't hesitate. This whole thing is such a monster that it's tough to get your head around all the possibilities. Both you and your son will be in my sincere prayers. Rosemarie Mom to Danny age 10 Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 , I'm so sorry to hear about Caden still being ill. I'm sure that must break your heart. I'm curious, have you tried Cimetidine yet? Again, it doesn't work for everyone, for some...not at all, but some kids have seen complete relief with it. Also, I'm sure you've done all the other genetic tests, but if not, don't hesitate. This whole thing is such a monster that it's tough to get your head around all the possibilities. Both you and your son will be in my sincere prayers. Rosemarie Mom to Danny age 10 Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Thank you for your thoughts. We actually have not tried Cimetidine or even steroids yet. Caden was initially diagnosed with cyclic neutropenia in May of this year. We just completed 6 wks of blood testing showing he does not have cyclic neutropenia. So, he just " officially " got his diagnosis of a couple of weeks ago. We are waiting for his next episode to try the steroids. We have not done genetic testing, but that will be our next step. Our Pediatric Hematologist and the Pediatric Immunologist did a full immune work up (to rule out HIDs etc) and all of that was fine. Unbelievably, he hasn't had a fever is 7 weeks - the longest he has gone since the tonsillectomy. Speaking of, that was done because they believed his recurrent fevers was tonsillitis. Thanks again. I look forward to getting more answers and trying the new therapy soon. Right now our big focus is just to keep him healthy and have him put on weight. Caden will be 5 in December and only weighs 32 pounds, yet he is average height. He is very thin. He gains a couple of pounds, then loses then during an episode. Anyone have advice on this??? Dallas, TX -- L. s shelleyluan@... (214) 223-7008 -------------- Original message -------------- > , > > I'm so sorry to hear about Caden still being ill. I'm sure that must break > your heart. > > I'm curious, have you tried Cimetidine yet? Again, it doesn't work for > everyone, for some...not at all, but some kids have seen complete relief > with it. > > Also, I'm sure you've done all the other genetic tests, but if not, don't > hesitate. This whole thing is such a monster that it's tough to get your > head around all the possibilities. > > Both you and your son will be in my sincere prayers. > > Rosemarie > Mom to Danny age 10 > Denver, CO > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Thank you for your thoughts. We actually have not tried Cimetidine or even steroids yet. Caden was initially diagnosed with cyclic neutropenia in May of this year. We just completed 6 wks of blood testing showing he does not have cyclic neutropenia. So, he just " officially " got his diagnosis of a couple of weeks ago. We are waiting for his next episode to try the steroids. We have not done genetic testing, but that will be our next step. Our Pediatric Hematologist and the Pediatric Immunologist did a full immune work up (to rule out HIDs etc) and all of that was fine. Unbelievably, he hasn't had a fever is 7 weeks - the longest he has gone since the tonsillectomy. Speaking of, that was done because they believed his recurrent fevers was tonsillitis. Thanks again. I look forward to getting more answers and trying the new therapy soon. Right now our big focus is just to keep him healthy and have him put on weight. Caden will be 5 in December and only weighs 32 pounds, yet he is average height. He is very thin. He gains a couple of pounds, then loses then during an episode. Anyone have advice on this??? Dallas, TX -- L. s shelleyluan@... (214) 223-7008 -------------- Original message -------------- > , > > I'm so sorry to hear about Caden still being ill. I'm sure that must break > your heart. > > I'm curious, have you tried Cimetidine yet? Again, it doesn't work for > everyone, for some...not at all, but some kids have seen complete relief > with it. > > Also, I'm sure you've done all the other genetic tests, but if not, don't > hesitate. This whole thing is such a monster that it's tough to get your > head around all the possibilities. > > Both you and your son will be in my sincere prayers. > > Rosemarie > Mom to Danny age 10 > Denver, CO > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 My daughter was like your son she is almost 5 and weighs 34 pounds and is average height. However we kept her weight up by letting her drink pediasure when ever she wanted it and making sure every calorie she consumed was healthy nutrient dense food. She had her tonsils out August 12th and has been eating like a horse since then and last night I noticed her ribs are finally not so well pronounced! I am hopeful maybe this is the turn around but to soon to tell. Christy mom to Missouri Valley Ia >>> shelleyluan@... 09/21/04 01:56PM >>> Thank you for your thoughts. We actually have not tried Cimetidine or even steroids yet. Caden was initially diagnosed with cyclic neutropenia in May of this year. We just completed 6 wks of blood testing showing he does not have cyclic neutropenia. So, he just " officially " got his diagnosis of a couple of weeks ago. We are waiting for his next episode to try the steroids. We have not done genetic testing, but that will be our next step. Our Pediatric Hematologist and the Pediatric Immunologist did a full immune work up (to rule out HIDs etc) and all of that was fine. Unbelievably, he hasn't had a fever is 7 weeks - the longest he has gone since the tonsillectomy. Speaking of, that was done because they believed his recurrent fevers was tonsillitis. Thanks again. I look forward to getting more answers and trying the new therapy soon. Right now our big focus is just to keep him healthy and have him put on weight. Caden will be 5 in December and only weighs 32 pounds, yet he is average height. He is very thin. He gains a couple of pounds, then loses then during an episode. Anyone have advice on this??? Dallas, TX -- L. s shelleyluan@... (214) 223-7008 -------------- Original message -------------- > , > > I'm so sorry to hear about Caden still being ill. I'm sure that must break > your heart. > > I'm curious, have you tried Cimetidine yet? Again, it doesn't work for > everyone, for some...not at all, but some kids have seen complete relief > with it. > > Also, I'm sure you've done all the other genetic tests, but if not, don't > hesitate. This whole thing is such a monster that it's tough to get your > head around all the possibilities. > > Both you and your son will be in my sincere prayers. > > Rosemarie > Mom to Danny age 10 > Denver, CO > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 My daughter was like your son she is almost 5 and weighs 34 pounds and is average height. However we kept her weight up by letting her drink pediasure when ever she wanted it and making sure every calorie she consumed was healthy nutrient dense food. She had her tonsils out August 12th and has been eating like a horse since then and last night I noticed her ribs are finally not so well pronounced! I am hopeful maybe this is the turn around but to soon to tell. Christy mom to Missouri Valley Ia >>> shelleyluan@... 09/21/04 01:56PM >>> Thank you for your thoughts. We actually have not tried Cimetidine or even steroids yet. Caden was initially diagnosed with cyclic neutropenia in May of this year. We just completed 6 wks of blood testing showing he does not have cyclic neutropenia. So, he just " officially " got his diagnosis of a couple of weeks ago. We are waiting for his next episode to try the steroids. We have not done genetic testing, but that will be our next step. Our Pediatric Hematologist and the Pediatric Immunologist did a full immune work up (to rule out HIDs etc) and all of that was fine. Unbelievably, he hasn't had a fever is 7 weeks - the longest he has gone since the tonsillectomy. Speaking of, that was done because they believed his recurrent fevers was tonsillitis. Thanks again. I look forward to getting more answers and trying the new therapy soon. Right now our big focus is just to keep him healthy and have him put on weight. Caden will be 5 in December and only weighs 32 pounds, yet he is average height. He is very thin. He gains a couple of pounds, then loses then during an episode. Anyone have advice on this??? Dallas, TX -- L. s shelleyluan@... (214) 223-7008 -------------- Original message -------------- > , > > I'm so sorry to hear about Caden still being ill. I'm sure that must break > your heart. > > I'm curious, have you tried Cimetidine yet? Again, it doesn't work for > everyone, for some...not at all, but some kids have seen complete relief > with it. > > Also, I'm sure you've done all the other genetic tests, but if not, don't > hesitate. This whole thing is such a monster that it's tough to get your > head around all the possibilities. > > Both you and your son will be in my sincere prayers. > > Rosemarie > Mom to Danny age 10 > Denver, CO > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 As for the weight issue, we told Danny that Ensure was a " milkshake " and he had one with every meal as well as one whenever he wanted it. We never tried pediasure, but only because he was 8 at the time and seemed to tolerate the Ensure ok (but NOT Ensure Plus...the extra fiber is not good for little kids). Re: Caden > Thank you for your thoughts. We actually have not tried Cimetidine or even steroids yet. Caden was initially diagnosed with cyclic neutropenia in May of this year. We just completed 6 wks of blood testing showing he does not have cyclic neutropenia. So, he just " officially " got his diagnosis of a couple of weeks ago. We are waiting for his next episode to try the steroids. > > We have not done genetic testing, but that will be our next step. Our Pediatric Hematologist and the Pediatric Immunologist did a full immune work up (to rule out HIDs etc) and all of that was fine. > > Unbelievably, he hasn't had a fever is 7 weeks - the longest he has gone since the tonsillectomy. Speaking of, that was done because they believed his recurrent fevers was tonsillitis. > > Thanks again. I look forward to getting more answers and trying the new therapy soon. Right now our big focus is just to keep him healthy and have him put on weight. Caden will be 5 in December and only weighs 32 pounds, yet he is average height. He is very thin. He gains a couple of pounds, then loses then during an episode. Anyone have advice on this??? > > > Dallas, TX > > -- > L. s > shelleyluan@... > (214) 223-7008 > > > > > -------------- Original message -------------- > > > , > > > > I'm so sorry to hear about Caden still being ill. I'm sure that must break > > your heart. > > > > I'm curious, have you tried Cimetidine yet? Again, it doesn't work for > > everyone, for some...not at all, but some kids have seen complete relief > > with it. > > > > Also, I'm sure you've done all the other genetic tests, but if not, don't > > hesitate. This whole thing is such a monster that it's tough to get your > > head around all the possibilities. > > > > Both you and your son will be in my sincere prayers. > > > > Rosemarie > > Mom to Danny age 10 > > Denver, CO > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 As for the weight issue, we told Danny that Ensure was a " milkshake " and he had one with every meal as well as one whenever he wanted it. We never tried pediasure, but only because he was 8 at the time and seemed to tolerate the Ensure ok (but NOT Ensure Plus...the extra fiber is not good for little kids). Re: Caden > Thank you for your thoughts. We actually have not tried Cimetidine or even steroids yet. Caden was initially diagnosed with cyclic neutropenia in May of this year. We just completed 6 wks of blood testing showing he does not have cyclic neutropenia. So, he just " officially " got his diagnosis of a couple of weeks ago. We are waiting for his next episode to try the steroids. > > We have not done genetic testing, but that will be our next step. Our Pediatric Hematologist and the Pediatric Immunologist did a full immune work up (to rule out HIDs etc) and all of that was fine. > > Unbelievably, he hasn't had a fever is 7 weeks - the longest he has gone since the tonsillectomy. Speaking of, that was done because they believed his recurrent fevers was tonsillitis. > > Thanks again. I look forward to getting more answers and trying the new therapy soon. Right now our big focus is just to keep him healthy and have him put on weight. Caden will be 5 in December and only weighs 32 pounds, yet he is average height. He is very thin. He gains a couple of pounds, then loses then during an episode. Anyone have advice on this??? > > > Dallas, TX > > -- > L. s > shelleyluan@... > (214) 223-7008 > > > > > -------------- Original message -------------- > > > , > > > > I'm so sorry to hear about Caden still being ill. I'm sure that must break > > your heart. > > > > I'm curious, have you tried Cimetidine yet? Again, it doesn't work for > > everyone, for some...not at all, but some kids have seen complete relief > > with it. > > > > Also, I'm sure you've done all the other genetic tests, but if not, don't > > hesitate. This whole thing is such a monster that it's tough to get your > > head around all the possibilities. > > > > Both you and your son will be in my sincere prayers. > > > > Rosemarie > > Mom to Danny age 10 > > Denver, CO > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 -, I am with Rosemarie, try the pediasure. I put it in a blender with a little ice, sometimes sugar (if he is really fussy) and he sucks it up. We bought special curvy straws and we even blend a banana in it. It is worth a try. You can even try a jamba juice with yogurt to see if he likes that. Full of all kinds of stuff. Just watch how his tummy reacts. Do you have Jamba juice there? If not, it is basically a fruit shake with yogurt. YUMMY. Good luck, -- In , " Rosemarie/Mike " <askent@c...> wrote: > As for the weight issue, we told Danny that Ensure was a " milkshake " and he > had one with every meal as well as one whenever he wanted it. We never > tried pediasure, but only because he was 8 at the time and seemed to > tolerate the Ensure ok (but NOT Ensure Plus...the extra fiber is not good > for little kids). > > > Re: Caden > > > > Thank you for your thoughts. We actually have not tried Cimetidine or > even steroids yet. Caden was initially diagnosed with cyclic neutropenia in > May of this year. We just completed 6 wks of blood testing showing he does > not have cyclic neutropenia. So, he just " officially " got his diagnosis of > a couple of weeks ago. We are waiting for his next episode to try the > steroids. > > > > We have not done genetic testing, but that will be our next step. Our > Pediatric Hematologist and the Pediatric Immunologist did a full immune work > up (to rule out HIDs etc) and all of that was fine. > > > > Unbelievably, he hasn't had a fever is 7 weeks - the longest he has gone > since the tonsillectomy. Speaking of, that was done because they believed > his recurrent fevers was tonsillitis. > > > > Thanks again. I look forward to getting more answers and trying the new > therapy soon. Right now our big focus is just to keep him healthy and have > him put on weight. Caden will be 5 in December and only weighs 32 pounds, > yet he is average height. He is very thin. He gains a couple of pounds, > then loses then during an episode. Anyone have advice on this??? > > > > > > Dallas, TX > > > > -- > > L. s > > shelleyluan@c... > > (214) 223-7008 > > > > > > > > > > -------------- Original message -------------- > > > > > , > > > > > > I'm so sorry to hear about Caden still being ill. I'm sure that must > break > > > your heart. > > > > > > I'm curious, have you tried Cimetidine yet? Again, it doesn't work for > > > everyone, for some...not at all, but some kids have seen complete relief > > > with it. > > > > > > Also, I'm sure you've done all the other genetic tests, but if not, > don't > > > hesitate. This whole thing is such a monster that it's tough to get your > > > head around all the possibilities. > > > > > > Both you and your son will be in my sincere prayers. > > > > > > Rosemarie > > > Mom to Danny age 10 > > > Denver, CO > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 -, I am with Rosemarie, try the pediasure. I put it in a blender with a little ice, sometimes sugar (if he is really fussy) and he sucks it up. We bought special curvy straws and we even blend a banana in it. It is worth a try. You can even try a jamba juice with yogurt to see if he likes that. Full of all kinds of stuff. Just watch how his tummy reacts. Do you have Jamba juice there? If not, it is basically a fruit shake with yogurt. YUMMY. Good luck, -- In , " Rosemarie/Mike " <askent@c...> wrote: > As for the weight issue, we told Danny that Ensure was a " milkshake " and he > had one with every meal as well as one whenever he wanted it. We never > tried pediasure, but only because he was 8 at the time and seemed to > tolerate the Ensure ok (but NOT Ensure Plus...the extra fiber is not good > for little kids). > > > Re: Caden > > > > Thank you for your thoughts. We actually have not tried Cimetidine or > even steroids yet. Caden was initially diagnosed with cyclic neutropenia in > May of this year. We just completed 6 wks of blood testing showing he does > not have cyclic neutropenia. So, he just " officially " got his diagnosis of > a couple of weeks ago. We are waiting for his next episode to try the > steroids. > > > > We have not done genetic testing, but that will be our next step. Our > Pediatric Hematologist and the Pediatric Immunologist did a full immune work > up (to rule out HIDs etc) and all of that was fine. > > > > Unbelievably, he hasn't had a fever is 7 weeks - the longest he has gone > since the tonsillectomy. Speaking of, that was done because they believed > his recurrent fevers was tonsillitis. > > > > Thanks again. I look forward to getting more answers and trying the new > therapy soon. Right now our big focus is just to keep him healthy and have > him put on weight. Caden will be 5 in December and only weighs 32 pounds, > yet he is average height. He is very thin. He gains a couple of pounds, > then loses then during an episode. Anyone have advice on this??? > > > > > > Dallas, TX > > > > -- > > L. s > > shelleyluan@c... > > (214) 223-7008 > > > > > > > > > > -------------- Original message -------------- > > > > > , > > > > > > I'm so sorry to hear about Caden still being ill. I'm sure that must > break > > > your heart. > > > > > > I'm curious, have you tried Cimetidine yet? Again, it doesn't work for > > > everyone, for some...not at all, but some kids have seen complete relief > > > with it. > > > > > > Also, I'm sure you've done all the other genetic tests, but if not, > don't > > > hesitate. This whole thing is such a monster that it's tough to get your > > > head around all the possibilities. > > > > > > Both you and your son will be in my sincere prayers. > > > > > > Rosemarie > > > Mom to Danny age 10 > > > Denver, CO > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 Hi , I have a little girl named Kianna who has , she was always underweight. She still gets her fevers but for whatever reason her body is getting used to it. She started getting her fevers at 10 mo. She is going to be 7. She now weighs 49lbs which for her is a lot. My 4 year old is quite large and until now was a mere 6 pounds lighter!!!! (and only inches shorter!!!) Hopefully like Kianna, Caden's body will adjust and he will gain some weight. Good luck. Azzoe shelleyluan@... wrote: Thank you for your thoughts. We actually have not tried Cimetidine or even steroids yet. Caden was initially diagnosed with cyclic neutropenia in May of this year. We just completed 6 wks of blood testing showing he does not have cyclic neutropenia. So, he just " officially " got his diagnosis of a couple of weeks ago. We are waiting for his next episode to try the steroids. We have not done genetic testing, but that will be our next step. Our Pediatric Hematologist and the Pediatric Immunologist did a full immune work up (to rule out HIDs etc) and all of that was fine. Unbelievably, he hasn't had a fever is 7 weeks - the longest he has gone since the tonsillectomy. Speaking of, that was done because they believed his recurrent fevers was tonsillitis. Thanks again. I look forward to getting more answers and trying the new therapy soon. Right now our big focus is just to keep him healthy and have him put on weight. Caden will be 5 in December and only weighs 32 pounds, yet he is average height. He is very thin. He gains a couple of pounds, then loses then during an episode. Anyone have advice on this??? Dallas, TX -- L. s shelleyluan@... (214) 223-7008 -------------- Original message -------------- > , > > I'm so sorry to hear about Caden still being ill. I'm sure that must break > your heart. > > I'm curious, have you tried Cimetidine yet? Again, it doesn't work for > everyone, for some...not at all, but some kids have seen complete relief > with it. > > Also, I'm sure you've done all the other genetic tests, but if not, don't > hesitate. This whole thing is such a monster that it's tough to get your > head around all the possibilities. > > Both you and your son will be in my sincere prayers. > > Rosemarie > Mom to Danny age 10 > Denver, CO > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 Hi , I have a little girl named Kianna who has , she was always underweight. She still gets her fevers but for whatever reason her body is getting used to it. She started getting her fevers at 10 mo. She is going to be 7. She now weighs 49lbs which for her is a lot. My 4 year old is quite large and until now was a mere 6 pounds lighter!!!! (and only inches shorter!!!) Hopefully like Kianna, Caden's body will adjust and he will gain some weight. Good luck. Azzoe shelleyluan@... wrote: Thank you for your thoughts. We actually have not tried Cimetidine or even steroids yet. Caden was initially diagnosed with cyclic neutropenia in May of this year. We just completed 6 wks of blood testing showing he does not have cyclic neutropenia. So, he just " officially " got his diagnosis of a couple of weeks ago. We are waiting for his next episode to try the steroids. We have not done genetic testing, but that will be our next step. Our Pediatric Hematologist and the Pediatric Immunologist did a full immune work up (to rule out HIDs etc) and all of that was fine. Unbelievably, he hasn't had a fever is 7 weeks - the longest he has gone since the tonsillectomy. Speaking of, that was done because they believed his recurrent fevers was tonsillitis. Thanks again. I look forward to getting more answers and trying the new therapy soon. Right now our big focus is just to keep him healthy and have him put on weight. Caden will be 5 in December and only weighs 32 pounds, yet he is average height. He is very thin. He gains a couple of pounds, then loses then during an episode. Anyone have advice on this??? Dallas, TX -- L. s shelleyluan@... (214) 223-7008 -------------- Original message -------------- > , > > I'm so sorry to hear about Caden still being ill. I'm sure that must break > your heart. > > I'm curious, have you tried Cimetidine yet? Again, it doesn't work for > everyone, for some...not at all, but some kids have seen complete relief > with it. > > Also, I'm sure you've done all the other genetic tests, but if not, don't > hesitate. This whole thing is such a monster that it's tough to get your > head around all the possibilities. > > Both you and your son will be in my sincere prayers. > > Rosemarie > Mom to Danny age 10 > Denver, CO > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2011 Report Share Posted May 6, 2011 Im so glad to hear about Caden! Congrats! > Congrats to Cole!!! My son Caden also goes to Rochester to " Dr. R " and > went from 54 degrees down to 8 after 9 casts! He now wears a brace which > we have changed every 4 to 6 months. He no longer needs to go under > anesthesia either. He now stands still for brace measurements. > Sent from my Verizon Wireless BlackBerry > > * Cole is Cured! >> >> >> >> We are home from rochester and the news was amazing. Cole has been in a >> brace full time for 1 year now. We entered his brace at 10 degrees >> standing >> and 2 degrees laying down. After 1 year he is now at 7 standing and 0 >> laying >> down! >> >> His numbers up to that point were: >> Pre Cast 47 supine, estimated 60's - 70's standing at 17 months >> After Cast 1 (19 months): 23 supine, 50 standing >> After Cast 2 (21 months): 18 supine, 30 standing >> After Cast 3 (25 months): 13 supine, 15 standing >> After Cast 5 (17 months): 2 supine, 10 standing >> >> We could not be happier. Cole got a new brace moulded which he will be >> wearing at night only. Our doctor wanted us to stop all together (which >> is >> standard practice for him after 1 year of bracing) but due to a >> miscommunication we had a new brace made already and I felt more >> comfortable >> weaning him over 6 months. I also feel that he will be almost 4 and >> through >> all his rapid growth which is very reassuring to me! >> >> At our next follow up in 6 months we will discontinue the brace all >> together and will continue to follow up with our doctor. They will also >> be >> doing a pulmonary test. >> >> We are very excited. Cole LOVES the new space brace with pink straps >> (he >> had told us that was what he wanted for months now!)! I am a bit >> nervous >> about weaning but very very excited about our results! >> >> I took a video of cole being moulded, while awake for the brace and >> will >> get it up on youtube soon so everyone can see. It was very very easy >> and >> took less than 5 minutes start to finish. >> >> Jenn >> Mommy to Cole, 3, and Max, 9 months. >> >> >> > > Quote Link to comment Share on other sites More sharing options...
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