Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 Hi Jodi, nice to hear from you. Yes Immi was tube fed....she showed no interest in the bottle as a baby...she was in special care for 7 weeks and I remember one nurse said that she saw another nurse actually 'feeding' Immi with the bottle. She said to her 'how did you do that?' and the other nurse replied' Iwaited until she yawned and shoved the bottle in!!' Anyway...she wouldn't feed so she had to have a nose tube....that was a nightmare...I had to put her nose tube in once a week...a horrible experience for all involved..and of course the thing would get caught and be pulled out and I'd have to do it again before the week was out...then we were persuaded that a tummy tube would be just the thing. So she had that put in at 16months. But it's so time consunimg and restrictive for them isn;t it...being tied to the pump and then of course they vomit after. BUT....in 2001 when she was 3 and a half she started eating...our consultant said for us to keep the tube in for 3 months without using it to moniter her weight...and although she didn't gain much...she didn't lose...and that was good enough for us so the wretched thing was removed. Anyone else reading this who is still tangled up with tubes....it WILL end! They may be picky...they may not eat very much some days...but as long as they are happy and healthy in themselves that's all that matters!! Her health is generally good now. Inthe early years she had a few hospital visits because colds would effect her chest and her breathing became alarming. But that was years ago...she just gets the odd cold same as other children...her coughs do sound alarming but I have to explain to her teachers that this is due to the fact that everything about Immi is small...and her tubes are small so ordinary coughs sound bad. As you said before Jodi...she is 'super tiny' I like that!! Positive vibes...... Eileen rssboy2002@... wrote: Hi Eileen. It's Jodi R. again. I responded to your so positive post about our little ones. You have such a great outlook on all of this. And yes, even though Imogen is very small, she is doing well. So, was she ever tube fed? I forget if you said. I wish I could stop cramming full through his tube. He would be a lot happier. I hate hearing him gag all day and then of course throwing up a couple times, eventually. I HATE IT! I wish he would just be able to gain at a comfortable rate. We did try slowing him down there for a while and he didn't gain hardly anything. Dr. Harbison was so worried about him by the time we got to her. So, of course she made matters worse for me. I mean, I was already worried about him, but she reinforced that. I was just telling Jenyfer in another post, maybe once we get him to a certain point, we can back him down. I live for that day! ) But, I wanted to respond to you because you are so positive about all of this, and I thank you for your encouragement! ) How is Imogen doing healthwise? Take care, Jodi R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 Jodi....Eileen again....just had a look at the photos...... is very much like Imogen in looks and build.......very similar features.....tho' her hair is not quite that blonde and she doesn't have those lovely big brown eyes!! Must get some pics on soon... Eileen EILEEN REID eileenreid2003@...> wrote: Hi Jodi, nice to hear from you. Yes Immi was tube fed....she showed no interest in the bottle as a baby...she was in special care for 7 weeks and I remember one nurse said that she saw another nurse actually 'feeding' Immi with the bottle. She said to her 'how did you do that?' and the other nurse replied' Iwaited until she yawned and shoved the bottle in!!' Anyway...she wouldn't feed so she had to have a nose tube....that was a nightmare...I had to put her nose tube in once a week...a horrible experience for all involved..and of course the thing would get caught and be pulled out and I'd have to do it again before the week was out...then we were persuaded that a tummy tube would be just the thing. So she had that put in at 16months. But it's so time consunimg and restrictive for them isn;t it...being tied to the pump and then of course they vomit after. BUT....in 2001 when she was 3 and a half she started eating...our consultant said for us to keep the tube in for 3 months without using it to moniter her weight...and although she didn't gain much...she didn't lose...and that was good enough for us so the wretched thing was removed. Anyone else reading this who is still tangled up with tubes....it WILL end! They may be picky...they may not eat very much some days...but as long as they are happy and healthy in themselves that's all that matters!! Her health is generally good now. Inthe early years she had a few hospital visits because colds would effect her chest and her breathing became alarming. But that was years ago...she just gets the odd cold same as other children...her coughs do sound alarming but I have to explain to her teachers that this is due to the fact that everything about Immi is small...and her tubes are small so ordinary coughs sound bad. As you said before Jodi...she is 'super tiny' I like that!! Positive vibes...... Eileen rssboy2002@... wrote: Hi Eileen. It's Jodi R. again. I responded to your so positive post about our little ones. You have such a great outlook on all of this. And yes, even though Imogen is very small, she is doing well. So, was she ever tube fed? I forget if you said. I wish I could stop cramming full through his tube. He would be a lot happier. I hate hearing him gag all day and then of course throwing up a couple times, eventually. I HATE IT! I wish he would just be able to gain at a comfortable rate. We did try slowing him down there for a while and he didn't gain hardly anything. Dr. Harbison was so worried about him by the time we got to her. So, of course she made matters worse for me. I mean, I was already worried about him, but she reinforced that. I was just telling Jenyfer in another post, maybe once we get him to a certain point, we can back him down. I live for that day! ) But, I wanted to respond to you because you are so positive about all of this, and I thank you for your encouragement! ) How is Imogen doing healthwise? Take care, Jodi R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Jodi....how I wish I was on the list when Imogen was on the pump feed sick merrygo round......those going through it now know how wretched it is......I'm glad I've found you lot now tho'........we are past those early problems...but there are still worries...and it is so fab to be able to share them with people who understand!! Happy New Year to everyone!! Eileen x Jodi Zwain magicrss@...> wrote: Thanks for the compliment, on Max's behalf. For now I am enjoying the nice " ride " where Max is handling things well and is happy and feeling good about himself. We never know when the other shoe will drop, so to speak, so we just go on with our lives and hope it doesn't happen soon. Max has definitely come a long way. You were not on the listserve when we went through the tough times over the past year or so, but you would never know it now. Whew! Jodi Z. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Eileen, You can email me any time and I will try to help. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 that's very much appreciated...thankyou Jodi Eileen x Jodi Zwain magicrss@...> wrote: Eileen, You can email me any time and I will try to help. Jodi --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Thanks Jodi...I will try and find that post. How sad eh? Puts our little troubles into perspective doesn't it! Take care Eileen x Jodi Rollison rssboy2002@...> wrote: Hi Eileen, I saw you had posted the question about the young man who passed away. I meant to get back to you sooner, but I see Jodi Z. responded to you. She is right, he did die in a care accident. If you want to read the original post from his brother, it is under #30604 or type in " Death of my brother who had RSS. " I think that is the way it was written. But, I think the two were twins, and both of them had/has RSS. Just wanted to let you know. Talk to you sson, Jodi R. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 eileen phelps mom to Becca almost 10, Mitochondrial Depletion Syndrome, and Alison 7, just A-Ok ************************** Eileen, What is mitochondrial depletion syndrome and how was it dx ? Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY ________________________________________________________________ Get your name as your email address. Includes spam protection, 1GB storage, no ads and more Only $1.99/ month - visit http://www.mysite.com/name today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 Hi Kim, The Mitochondrial Depletion Syndrome was dx'd after 8yrs of testing, and it was by Dr. at Albany Medical Center within the first 15 minutes of our first visit. He looked at the results of all her test's over the years, and then referred to the CK levels that were done 8mo prior to the visit and said just so matter of factly " She has MDS " My jaw hit the floor and he became my HERO! We have seen way to many " experts " that didn't know what she had, they just wanted to do more and more test's. I can't really put into words what MDS is, but I know that www.mda.org has a search feature, I'll find it on their website and cut and paste. eileen > > eileen phelps mom to Becca almost 10, Mitochondrial Depletion Syndrome, and Alison 7, just A-Ok > ************************** > Eileen, > What is mitochondrial depletion syndrome and how was it dx ? > > > > Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY > > ________________________________________________________________ > Get your name as your email address. > Includes spam protection, 1GB storage, no ads and more > Only $1.99/ month - visit http://www.mysite.com/name today! Quote Link to comment Share on other sites More sharing options...
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