Guest guest Posted May 9, 2002 Report Share Posted May 9, 2002 You are such a sweetie! Thanks for all you do! I have just read the info. that has sent to you and it was great! She sure is one busy lady. I am resting I promise. I went to bed early last night but couldn't sleep. I just laid in there and rested anyway.LOL Know you are in my thoughts and I am praying that all will go well with you! Again Thanks for being there! Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2002 Report Share Posted June 25, 2002 Susiecue, thanks so much for the update on your birthday. It sounds like it was WONDERFUL!! CONGRATULATIONS on the pred. Yippee.... lower and lower.. Doesn't it feel wonderful to start to see a difference in yourself. It is something for you to be very proud of. But let me tell you, you sure made me hungry telling us all the good stuff you ate. LOL ummmm, it all sounded so good. Now get some rest and recoup from the weekend. hugs PS. I have something I'm proud of too. It has been since Nov 23 since I have smoked. One day at a time is how I'm doing it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2005 Report Share Posted May 18, 2005 Amelietrice, I just wanted to say welcome to the group and I am so glad that you are feeling better already. I am just reading the posts, so I missed welcoming you in initially! ) I have a son, , who will be 3 on Monday. He was born at 34 weeks weighing 2 lbs. 12 1/2 oz. and 14 1/4 " long. He is now 22 lbs. 4 oz. and 32 " . He is on a feeding tube and gets 100% of his calories intake met this way. He is in the process of learning to eat and chew foods productively. I just wanted to tell you that you should really plan on coming to the MAGIC Convention in July. You will learn so much more about RSS or SGA and will meet so many wonderful people. PLUS, there is an expert in RSS, Dr. Madeleine Harbison, who sees patients at the Convention. She has made many diagnosis at the Convention alone. She is wonderful and she is such a wealth of info. You will totally not regret seeing her. I am sure many others will share about the Convention with you as well. Take care and welcome again, Jodi R. 's mommy > I just wanted to say thanks to all of you that have responded to my > post. You guys are quick! I feel a little better knowing that I am > already doing a few things right, like adding high calorie stuff to > his food. I guess we just have to wait and see how the blood work > turns out. The endocrinologist said we will start growth hormone in > another 6 months to a year, but he wants to watch his growth for a > couple of months before we start, to get a good baseline. He said it > was good that we are getting evaluated now when he is 13 months, lots > of opportunity to grow. I guess we'll be going down this road whether > he is SGA or RSS. It sounds like the periactin will be a good thing to > bring up, especially if it helps him take in more calories for the > extra growth. Do they automatically put them on it or will his > appetite increase with the growth hormone? (I know, I ask a million > questions; I'm a nurse so it comes with the territory.) When it comes > to info about this stuff I feel like I need to soak it up like a > sponge! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2005 Report Share Posted May 19, 2005 what is a upd#7 test? Re: Thanks Hi Amelietrice, Please don't expect a positive result from the UPD#7 test. Only about 10%of RSS kids have it because of UPD#7. The rest are idiopathic. You are right, it really doesn't matter if he is RSS or SGA, the treatment is the same. Although, in some research reported at the Magic convention by Dr. Wolman a fewyears ago, he noted that RSS kids have a higher deviation from the growth curve than SGA kids and that RSS kids showed a better result on growth hormone than SGA. I'm sure B. can give you the exact results he presented. No, doctors don't automatically put kids on periactin. In fact some object to it saying it does no good. You might have a bit of an argument with your doctor about this. If you do start periactin, often (but not always) there is a big appetite spike initially then it seems to taper off and not work. What is happening is kids adjust to it but it raises the long term average calorie intake. Maybe they eat an extra 50 to 100 calories a day. You might hardly notice that until you stop for awhile. Some doctors and parents go on a periactin hoilday. For my son, this proves to be a little rough becasue just when he is used to not having it, we start again and he has to readjust all over. For some kids it does cause drowsiness and irratbility. We avoid that by giving periactin just before dinner. He eats and shortly thereafter we put him to bed. Last, for my son, there seems to be synergistic affect between growth hormone and periactin. Stop one and the other becomes much less affective. Yes, growth hormone does have some appetite stimulating properites. But it is not a big affect, at least not for my son. Others have had different results. As a nurse, you probably notice that all the time. I hope this helps. Ken M > I just wanted to say thanks to all of you that have responded to my > post. You guys are quick! I feel a little better knowing that I am > already doing a few things right, like adding high calorie stuff to > his food. I guess we just have to wait and see how the blood work > turns out. The endocrinologist said we will start growth hormone in > another 6 months to a year, but he wants to watch his growth for a > couple of months before we start, to get a good baseline. He said it > was good that we are getting evaluated now when he is 13 months, lots > of opportunity to grow. I guess we'll be going down this road whether > he is SGA or RSS. It sounds like the periactin will be a good thing to > bring up, especially if it helps him take in more calories for the > extra growth. Do they automatically put them on it or will his > appetite increase with the growth hormone? (I know, I ask a million > questions; I'm a nurse so it comes with the territory.) When it comes > to info about this stuff I feel like I need to soak it up like a > sponge! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 > > > I just wanted to thank everyone for all the input I got and so quickly. I am > going to keep up the fruits/veggies etc and stay far as I can from > grains/sugars for my little guy but will wait to do the diet until I have > reread the book, cooked some of the food and am COMPLETELY prepared. I > thought that I could dive into it like I did the GFCF diet but did not > realize the multitude of restrictions and " can't haves " so instead of > stressing myself out... I am going to be prepared before I start this. > > It's nice to hear all the great stories and will keep checking in....and > hopefully I will have Cole on this diet before December! > > > Thanks, > > Tumpa Reinhardt Tumpa, Did I miss something as to why you are not starting until December? Just avoiding sugar and grain will help but will not eliminate all the bad bacteria and they mulitply very rapidly. We understand some people optfor a gradual transition but it slows things down. Waiting two months is losing valuable time. I am assuming you have a really important reason for waiting. Carol F. SCD 6 years Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.