Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Hi, I thought I would jump in here because I remember you saying that Pernille gets physical therapy 2 times a month. Here in the US, my daughter gets physical therapy for her large motor skills (walking, running (well, not yet!), crawling, balance) and occupational therapy to help with tasks such as eating and speaking. My daughter gets physical therapy 2 times a week and occupational therapy 2 times a month. A nutritionist is someone trained in understanding food and how it works in your body. A nutritionist could see Pernille to make sure she is eating enough fruits or vegetables for example. My daughter Emerence also eats (many kids with Silver or SGA do not) but not a lot at a time. We feed her though breakfast, snack, lunch, snack, snack, dinner, snack. Have you tried high fat yogurt and using a blender with fruit and whole milk? My daughter loves those. Your English is fine by the way! , mom to 4.5 non RSS, Emerence 17.5 month 17 lb 7 oz, 28.5 in. SGA > > > Hi, I am a mom to a little girl named Pernille and we live in > > > Norway. we call it silver-russel over here. The doctors at our > > > hospital have after over a year finally come with a name of what > > > they think is wrong with my doughter. The problem here is that > > noone > > > has ever heard about this. And i found this site and so happy > that > > I > > > am not alone. > > > > > > I feel a little alone in this....... and wondered it anyone has > > > experienced anything that we have. > > > > > > Pernille eats well but is not gaining much waight. She turnes 2 > in > > > october and is only 74 cm and 7,8 kilos. i have a feeling that > > > everyone has problems with eating and keeping the food down, > > > reflux.... is this so? > > > > > > The 11 of august we are going to the hospital to do the bone x- > > ray, > > > take a sample of the spinalfluid, musclebiopsy, MR of her head. > > > > > > We have alredy done hormontest and are waiting for a new in > > > september. She has low blood suger. She was small at birth, only > > 44 > > > cm and 2,5 kilos, she was fullborned. > > > > > > Sorry my language, its alot of hard words to translate. > > > > > > Hope anyone are in my shoes. > > > > > > Love Stine mom of Kristoffer 4 years and Pernille soon 2 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Stine Welcome to the group.........a bunch of terrific people here and you will learn so much. I had to write when I saw your daughter's birthday. My son was born on October 9th as well (in 1992) as you can see he is almost 12. He is very small for his age and has RSS. Fortunately he never had a feeding tube or therapy. He was just over 2 years old before any doctor even thought there was something wrong. He was a very fat and chubby baby until his first birthday. He is a good eater as well as your daughter. He eats often, I just make sure there is always food around for him. A few years ago I changed the bottom drawer in my kitchen to " Adam's drawer " and I keep store bought puddings and crackers and stuff like that in there for him to help himself to whenever he is hungry. Now he's older and he makes things for himself (like sandwiches etc) using the fridge or microwave. He knows he can eat whenever and that has worked the best for us. Even though all our kids have RSS some have various symptoms of it and some have it more severely than others. Adam started to get his teeth just after his first birthday and his first adult tooth came through when he was just over 8 years old. Oh I should tell you we live in Canada, so you can tell your family this is truly a world wide network of families!! Ask any questions that you may have. I can't get into all the details of some of your questions because Adam was much older when we discovered the problems. But others will certainly chime in with answers for you. Welcome again and by the way, your English is excellent. Your emails are wonderful! Debby in Canada question for Gaby > Hi Stella. > > Thank you for your respond. Your Gaby sounds very much like my > Pernille. Pernille turns 2 on the 9. of october this year. > > Can i ask you some questions? When did you get the diagnosis for > Gaby? What was it that made the doctors say it was RSS? How much did > she weight at birth? What is Occuptional therapy? What is a > nutriotist? When did she start walking? Has she gotten all her > teeth? Does she eat a lot, Pernille does....But we dont know where > it goes(the food, its not staying on her body).....lol..... she is > always the last to finish a meal, and we are all sitting waiting for > her to finish..... > > Good luck on the potty training, maybe i shoud introduse the potty > for Pernille aswell? I think I will...... > > Thank you for your nice words. Its so good to talk to someone who > are in our shoes. Its so frustrating to hear : " oh, but she looks so > well and happy, there is nothing wrong with her " And my same > respons: we know there is something wrong and so do the doctors > say... > > Wrong is maybe a wrong translation, but cant find a better > word....lol > > Stine mom to Kristoffer 4 and Pernille soon 2 > > > > > Hi, I am a mom to a little girl named Pernille and we live in > > > Norway. we call it silver-russel over here. The doctors at our > > > hospital have after over a year finally come with a name of what > > > they think is wrong with my doughter. The problem here is that > > noone > > > has ever heard about this. And i found this site and so happy > that > > I > > > am not alone. > > > > > > I feel a little alone in this....... and wondered it anyone has > > > experienced anything that we have. > > > > > > Pernille eats well but is not gaining much waight. She turnes 2 > in > > > october and is only 74 cm and 7,8 kilos. i have a feeling that > > > everyone has problems with eating and keeping the food down, > > > reflux.... is this so? > > > > > > The 11 of august we are going to the hospital to do the bone x- > > ray, > > > take a sample of the spinalfluid, musclebiopsy, MR of her head. > > > > > > We have alredy done hormontest and are waiting for a new in > > > september. She has low blood suger. She was small at birth, only > > 44 > > > cm and 2,5 kilos, she was fullborned. > > > > > > Sorry my language, its alot of hard words to translate. > > > > > > Hope anyone are in my shoes. > > > > > > Love Stine mom of Kristoffer 4 years and Pernille soon 2 years. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2004 Report Share Posted August 1, 2004 Stine, First I am sorry I did not answer you back right away, The doctors were not able to figure what she had until she was around 8 months. All the specilist we saw told me she was just small and would catch up, but her regular Ped. doctor, did not take that as an answer and finally we went one more genetics and the minute she saw Gaby and saw her birth weigth she told us what gaby had. Gaby was 1.8 kilos when she was born. The doctors thought that I can not feed myself and that was the reason she was so small. I eat like there was not tomorrow, I always eat right and take care of my self when i am pregent. As for when Gaby starting was was a couple a weeks before she turn 1 yr old. and She almos has all her teeth. Occuptional Therapy teach a child how to hold a pencil, how to pick up small items, and how to use there hands and body. A Nutritienest,show you how to give her more clories in her food. this is improve so they do not devlop low blood sugar problems and at the same time to not become overwieght, for there size. Gaby eats a lot. Please remember that with RSS, we do not know why our children to not gain weight even thourgh they eat. What I do it leave a lot of food (like Grape, yogurt, cookie, orange) were she plays, which is all over the house and that way I know that she eat all the time. it is important that our kids eat every 3 to 4 hrs. There is a powder milk call " pepteman Junior " made by Nestle, which I add to her milk and this give her extra calories. I know that sometime it becames too much, but everything well be okay. Just have faith! Best wishe to you and your family. If you have any other questions please le me know, my pravite email is " asayed@... " . I always look at my email. Sincerely, Stella mom of Amani, Andres and Gaby > > > Hi, I am a mom to a little girl named Pernille and we live in > > > Norway. we call it silver-russel over here. The doctors at our > > > hospital have after over a year finally come with a name of what > > > they think is wrong with my doughter. The problem here is that > > noone > > > has ever heard about this. And i found this site and so happy > that > > I > > > am not alone. > > > > > > I feel a little alone in this....... and wondered it anyone has > > > experienced anything that we have. > > > > > > Pernille eats well but is not gaining much waight. She turnes 2 > in > > > october and is only 74 cm and 7,8 kilos. i have a feeling that > > > everyone has problems with eating and keeping the food down, > > > reflux.... is this so? > > > > > > The 11 of august we are going to the hospital to do the bone x- > > ray, > > > take a sample of the spinalfluid, musclebiopsy, MR of her head. > > > > > > We have alredy done hormontest and are waiting for a new in > > > september. She has low blood suger. She was small at birth, only > > 44 > > > cm and 2,5 kilos, she was fullborned. > > > > > > Sorry my language, its alot of hard words to translate. > > > > > > Hope anyone are in my shoes. > > > > > > Love Stine mom of Kristoffer 4 years and Pernille soon 2 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2004 Report Share Posted August 1, 2004 Stine, First I am sorry I did not answer you back right away, The doctors were not able to figure what she had until she was around 8 months. All the specilist we saw told me she was just small and would catch up, but her regular Ped. doctor, did not take that as an answer and finally we went one more genetics and the minute she saw Gaby and saw her birth weigth she told us what gaby had. Gaby was 1.8 kilos when she was born. The doctors thought that I can not feed myself and that was the reason she was so small. I eat like there was not tomorrow, I always eat right and take care of my self when i am pregent. As for when Gaby starting was was a couple a weeks before she turn 1 yr old. and She almos has all her teeth. Occuptional Therapy teach a child how to hold a pencil, how to pick up small items, and how to use there hands and body. A Nutritienest,show you how to give her more clories in her food. this is improve so they do not devlop low blood sugar problems and at the same time to not become overwieght, for there size. Gaby eats a lot. Please remember that with RSS, we do not know why our children to not gain weight even thourgh they eat. What I do it leave a lot of food (like Grape, yogurt, cookie, orange) were she plays, which is all over the house and that way I know that she eat all the time. it is important that our kids eat every 3 to 4 hrs. There is a powder milk call " pepteman Junior " made by Nestle, which I add to her milk and this give her extra calories. I know that sometime it becames too much, but everything well be okay. Just have faith! Best wishe to you and your family. If you have any other questions please le me know, my pravite email is " asayed@... " . I always look at my email. Sincerely, Stella mom of Amani, Andres and Gaby > > > Hi, I am a mom to a little girl named Pernille and we live in > > > Norway. we call it silver-russel over here. The doctors at our > > > hospital have after over a year finally come with a name of what > > > they think is wrong with my doughter. The problem here is that > > noone > > > has ever heard about this. And i found this site and so happy > that > > I > > > am not alone. > > > > > > I feel a little alone in this....... and wondered it anyone has > > > experienced anything that we have. > > > > > > Pernille eats well but is not gaining much waight. She turnes 2 > in > > > october and is only 74 cm and 7,8 kilos. i have a feeling that > > > everyone has problems with eating and keeping the food down, > > > reflux.... is this so? > > > > > > The 11 of august we are going to the hospital to do the bone x- > > ray, > > > take a sample of the spinalfluid, musclebiopsy, MR of her head. > > > > > > We have alredy done hormontest and are waiting for a new in > > > september. She has low blood suger. She was small at birth, only > > 44 > > > cm and 2,5 kilos, she was fullborned. > > > > > > Sorry my language, its alot of hard words to translate. > > > > > > Hope anyone are in my shoes. > > > > > > Love Stine mom of Kristoffer 4 years and Pernille soon 2 years. Quote Link to comment Share on other sites More sharing options...
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