Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 Good morning, I am the Mother of a beatiful 18 month old girl-who just happens to have Prader-Willi Syndrome. We are almost vegan (the soy cheese we eat contains casien and some of the veggie 'meat' products contain dairy) and must say that we feel so much better for it. We changed our diet at the beginning of the year in hopes of becoming more healthy and to help our daughter. She loves her soy milk and veggies! Our path is a bit more difficult as we must monitor our daughter's calories-while ensuring proper nutrition. Sadly, she was unable to nurse (most PWS children can not due to low tone) and due to health reasons I could only pump for 1 month. We have been blessed to find medical professionals who agree with our diet and have helped ensure our daughter receives all the proper nutrients. At any rate, she is the light of our lives-and I was wondering if there are any other parents/caregivers of special needs children out there. Take Care, Terri Curious about Prader-Willi Syndrome? check out www.pwsausa.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Hi there, My husband and I are vegetarian (not vegan, sorry) parents of a 10 month old exceedingly rambunctious little boy who happens to be blind. (My husband is blind as well and as it turns out he's a genetic mutant. :-) ) Although this has nothing to do with his diet (we chose to raise him vegetarian because of our belief system) I suppose we are parents of a 'special needs child' as well. tabrowning68 [TABrowning68] Monday, August 26, 2002 10:45 AM Any Special Needs Vegan Parents out there? Good morning, I am the Mother of a beatiful 18 month old girl-who just happens to have Prader-Willi Syndrome. We are almost vegan (the soy cheese we eat contains casien and some of the veggie 'meat' products contain dairy) and must say that we feel so much better for it. We changed our diet at the beginning of the year in hopes of becoming more healthy and to help our daughter. She loves her soy milk and veggies! Our path is a bit more difficult as we must monitor our daughter's calories-while ensuring proper nutrition. Sadly, she was unable to nurse (most PWS children can not due to low tone) and due to health reasons I could only pump for 1 month. We have been blessed to find medical professionals who agree with our diet and have helped ensure our daughter receives all the proper nutrients. At any rate, she is the light of our lives-and I was wondering if there are any other parents/caregivers of special needs children out there. Take Care, Terri Curious about Prader-Willi Syndrome? check out www.pwsausa.org For more information about vegetarianism, please visit the VRG website at http://www.vrg.org and for materials especially useful for families go to http://www.vrg.org/family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Terri, Nice to 'meet' you. My ds has a CHD (congenital heart defect). Most of the time I forget about it (he's always been very healthy), but we did go ahead with open heart surgery about a month and a half ago. Parker nurses (despite being in NICU for four days when he was born and not allowed anything). Most CHD kids can't nurse either so I completely understand. We also have some great cardiologists who are very supportive of our being vegan (three of them are vegetarian themselves), but it was tough when we were in the hospital. Linda IL, USA --- tabrowning68 <TABrowning68 wrote: > Good morning, I am the Mother of a beatiful 18 month > old girl-who > just happens to have Prader-Willi Syndrome. > We are almost vegan (the soy cheese we eat contains > casien and some > of the veggie 'meat' products contain dairy) and > must say that we > feel so much better for it. We changed our diet at > the beginning of > the year in hopes of becoming more healthy and to > help our daughter. > She loves her soy milk and veggies! > > Our path is a bit more difficult as we must monitor > our daughter's > calories-while ensuring proper nutrition. Sadly, > she was unable to > nurse (most PWS children can not due to low tone) > and due to health > reasons I could only pump for 1 month. We have been > blessed to find > medical professionals who agree with our diet and > have helped ensure > our daughter receives all the proper nutrients. > > At any rate, she is the light of our lives-and I was > wondering if > there are any other parents/caregivers of special > needs children out > there. > > Take Care, > Terri > Curious about Prader-Willi Syndrome? > check out www.pwsausa.org > > > > > Finance - Get real-time stock quotes http://finance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 , " tabrowning68 " <TABrowning68@h...> wrote: > > At any rate, she is the light of our lives-and I was wondering if > there are any other parents/caregivers of special needs children out > there. Hi Terri, We are vegetarians (not vegans), and my second son was born with a giant omphalocele. That is a birth defect in which the abdominal wall fails to close properly, and he was born with his liver and part of his bowel outside his body. He's had five surgeries to date to fix the damage (thank G-d it is just plumbing), just a couple of minor ones to go. He is now three years old and totally amazing ... despite 27 days in NICU he was fully breastfed as an infant and is now still nursing (although it is now somewhat prefunctory as I am temporarily a bit low on milk). Be well, Hadass in Winnipeg. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Hadass, I got shivers reading your post. My son was born with gastrochisis which sounds like a close cousin to what your son was born with. In gastrochisis, the majority of the bowel is outside the body at birth. My son spent 3 1/2 months in the NICU but now is a healthy 2 yr old, thankfully. But for the scar on his abdomen and his lack of a belly button, I often forget. Good luck on future surgeries. We are vegetarian not vegan. Although, I seem to be leaning more towards going vegan. I keep eliminating things from my own diet. Katie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 , nanulex@a... wrote: > Hadass, > > I got shivers reading your post. My son was born with gastrochisis which > sounds like a close cousin to what your son was born with. It is - they are generally discussed together in the literature, being both midline defects. Cleft palate apparently is also a midline defect, but obviously it is generally a little less dramatic than the abdominal ones (despite being more visible). In gastrochisis, > the majority of the bowel is outside the body at birth. My son spent 3 1/2 > months in the NICU but now is a healthy 2 yr old, thankfully. But for the > scar on his abdomen and his lack of a belly button, I often forget. Good > luck on future surgeries. Thanks! How does your son feel about not having a bellybutton? We tried to give Ari one at his last surgery, but the surgeon said that there wasn't enough subcutaneous fat there yet. Maybe in a few years' time ... Ari does talk about it, he clearly knows that he's different. > > We are vegetarian not vegan. Although, I seem to be leaning more towards > going vegan. I keep eliminating things from my own diet. I know the feeling ... although right now, being pregnant again, I'm a bit more cautious with that kind of experimentation 8-). Be well, Hadass in Winnipeg. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 In a message dated 9/3/2002 8:00:39 AM Eastern Standard Time, heviatar writes: > Thanks! How does your son feel about not having a bellybutton? We > tried to give Ari one at his last surgery, but the surgeon said that > there wasn't enough subcutaneous fat there yet. Maybe in a few years' > time ... Ari does talk about it, he clearly knows that he's different. > > Kyle hasn't really noticed it yet. He picks up his shirt and shoes off his belly just like his brother does. The way his scar runs you can sort of see where his belly button should be. (At least I think that's where it would be) The scar is sort of jagged and there is a puckering that at a quick glance you might think was his belly button. I think next summer will be his time to notice the difference (he'll be three then) Heart murmurs (which my son also has) is also considered a midline disorder and is common in kids with gastrochisis. If you don't mind me asking, why multiple surgeries over a few years? I guess I'm wondering why my son got so lucky and had all his surgical stuff wrapped up by 31/2 months. BTW, lest anyone think that these disorders are the result of a vegetarian diet, my son was adopted. From what i've read and been told these two disorders are rare and basically random. I didn't want anyone thinking it was a vegetarian or vegan thing. Thank you for sharing Katie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 , nanulex@a... wrote: Re: little guys with no bellybuttons > Kyle hasn't really noticed it yet. He picks up his shirt and shoes off his > belly just like his brother does. The way his scar runs you can sort of see > where his belly button should be. (At least I think that's where it would be) > The scar is sort of jagged and there is a puckering that at a quick glance > you might think was his belly button. I think next summer will be his time > to notice the difference (he'll be three then) That's pretty much when Ari started to talk about it. He says, " I'll have a bellybutton soon! " He also has a bit of a depression where the bellybutton should be (I think the docs do that on purpose!), but it obviously doesn't satisfy him 8-(. > > Heart murmurs (which my son also has) is also considered a midline disorder > and is common in kids with gastrochisis. Omphalocele as well, but thank G-d we have had no sign of it. > > If you don't mind me asking, why multiple surgeries over a few years? I > guess I'm wondering why my son got so lucky and had all his surgical stuff > wrapped up by 31/2 months. The main difference between gastroschisis and omphalocele is that the former involves only the bowel; in the latter, major organs such as the liver actually stay outside the body. So it is just not possible to put it all in that quickly, sometimes. They tried, but it put too much pressure on his vena cava and they had to take it out again. Also, the rectus muscles were just too far apart at that point to be attached together, had to wait until he grew into his abdomen, so to speak. > > BTW, lest anyone think that these disorders are the result of a vegetarian > diet, my son was adopted. From what i've read and been told these two > disorders are rare and basically random. I didn't want anyone thinking it > was a vegetarian or vegan thing. Absolutely not! I belong to an omphalocele group, and there is much speculation and discussion about the possible causes of this defect. AFAIK nobody has ever mentioned a vegetarian diet as a possibility 8- ). I guess that does make this off-topic ... but hey, this is a group for vegetarian PARENTS, right? ;-) BTW, Ari is not adopted, and I have a huge vertical C-section scar to show for it, alas ... and a so- called " elective " (ha!) C-section coming up for my current pregnancy as a result! Ah well. Be well, Hadass in Winnipeg. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 > I was wondering if > there are any other parents/caregivers of special needs children out > there. Terri, Sorry for the delay of this reply. I have been without a computer for the past 5 weeks! I wanted to answer this mail. Your daughter sounds like such a wonderful piece in the web of your lives. We have a totally different special need with our son. He is 6 1/2 yrs. old now. He was born with a bi-lateral sensori neural profound hearing loss. We finally figured it at around 18 months. The blessing is that he got a cochlear implant when he was 2 yrs. and 3 months. It works amazingly well. He is in a deaf and hard of hearing program and is mainstreamed in the same public school half of the day. He can hear me whisper and I can talk behind him and he will hear most of what I say. He has been vegan all his life. We have been sending snacks and food to school for the past 4 yrs. He did have a gross motor delay and has a leg length discrepancy. He has vestibular issues too; so we are starting sensory integration therapy with an OT this year outside of school. He nursed till just past 2 yrs. old and eats almost anothing in sight. His speech is the most challanging thing so far; but most people don't even realize that he has a hearing loss. F.Y.I - We choose not to immunize as well. Peace, Laura Quote Link to comment Share on other sites More sharing options...
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