Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Hi , My name is Ginger. I live in land. We are in similiar boat- my 13 month old was just diagnosed on Monday. Even though I am glad to have a diagnosis I felt like I had been kicked in the stomach. And for you to have the double hit of your son's recent new diagnosis!I'm so sorry! Hopefully we can weather this together. ~Ginger Mommy to Meg (RSS) 13 months old 13 pounds, newly dx.~ > Hi my name is and we just received the diagnosis of RSS on my > daughter, Hannah yesterday (she will be 3 in 4 months. She weighed > 5lb8oz at birth and was 18 " . I really began searching for answers > when she dropped to 7 blocks off the growth charts in both height and > weight about 8 months ago(previously she was 3 blocks off and had > stayed there since birth. My doctor really didn't think anything was > wrong with her- even after receiving back abnormal blood work. I > spoke with a nutritionist and started her on at least 3-4 cans of > Pediasure daily as well as trying to get her to eat something aprox > every two hrs if she wasn't drinking a Pediasure. Her Blood Sugar was > running in the 50s after eating a large meal. She now weighs 22 1/2 > lbs and is 32 1/2 " which is 2 1/2 lb gain since her 2nd Birthday (her > head was in the 75th percantile for her age). I am wanting to know > if there are any parents that live in Oklahoma? How rare is this? > And basically what is next. To make my life even more interesting my > little boy was diagnosed with autism 3 wks ago. Anyone out there > please help with answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Hi , I am so sorry to hear of your difficulties. Hopefully you can find some help here. This is a great group of people. I have 4 year old boy/girl twins. My son, , has RSS. First, you mention abnormal blood work. That should have nothing to do with RSS so it should be investigated further to determine what that is. Second, many of " our " children have problems with hypoclycemia. Although mine does not, the key seems to be protein and complex carbs and eating often, even if just a few mouthfuls. Third, some of our children are eaters and some are not. Either way, most RSS children need what doctors believe is an extraordinary amount of calories to grow. You need to figure out how to get more (and maybe better) calories into your daughter. If you look at the database, there are some high calorie recipes that people have posted. Fourth, many of our children take a medication called periactic. It is a low-level antihistamine that has the side effect of stimulating the appetite. Fifth, you don't say what type of doctor you are seeing. You should see an endocrinologist and probably a gastroenterologist as well. Many RSS children digest their food very slowly. The main doctor for RSS is Dr Harbison located in NYC. I don't know if you would be able to get to NYC to see her. However, there is an annual convention in Chicago. Dr H does attend and sees as many people as possible while there. Feel free to post further or email me directly (you can do that by clicking on my email address above). Good luck, Judith, Steve, (RSS) and (non RSS) 4 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 hi alicia!! welcome to the group!!!! you will learn alot from this wonderful group of people on this list serve!! they are like an extened family. my son christopher is 3 and at birth weighed 5lbs 10oz 18 1/2 " he is now 23lbs 33 " . i hope you can now get the answeres you need!! do you have an endocrinologist? have you gone to the magic foundation web site yet? they will be able to send you all the info you want on rss, all you have to do is join and it is definitly worth it!! good luck!! jodie (nicholas-6 nonrss, christopher-3 rss 23lbs 33 " ght genotropin .6, johnathon-9m nonrss) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 hi ginger!! a warm welcome to you as well!! hope you too get the help and answeres you need through the help of this wonderful group!! good luck!! jodie (nicholas-6 nonrss, christopher-3 rss 23lbs 33 " ght genotropin .6, johnathon-9m nonrss) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Thanks Judith and Ginger for the support! It feels really good just to hear some feedback from someone that is going through the same thing! I have a question for anyone out there- I am in the process of trying to apply for SS benefits for my 3 yr old autistic son. Is this RSS something that I could apply for SS benefits also with any sucess? Any feedback would be great if anyone has had any experience in this area! Thanks - (Mom to Hannah 2 1/2 RSS and Braxton 3 1/2 nonRSS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Hi , I know of other parents of RSS children that have applied for benefits, so I know it can be done although we did not do it. Hopefully someone else with more experience in this area will respond. Judith, Steve, (RSS) and (non RSS) 4 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Jody- Thanks for your response. How is physically doing? Is he on a medications? Do the go by the severity of the child or the severity of the disease or do you know? Thanks- PS Where do you live? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Hi - So you have a Hannah too! My dad lives in Plano and we are in that direction several times a year (if you are close maybe we could get together sometime) Has anyone given you a projected height on how tall your Hannah will be? Is there anyway to tell? Thanks . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Hi, We are a family that lives in north Texas. Our daughter was diagnosed with RSS about 8 years ago. The only advice I can give is to keep her going on the pediasure. This really helped with calorie intake. My Hannah turned 11 and we had to start watching what we ate in order to slow down on calorie intake. She didn't like that very much but we tried to keep it very positive. Good Luck! > Hi my name is and we just received the diagnosis of RSS on my > daughter, Hannah yesterday (she will be 3 in 4 months. She weighed > 5lb8oz at birth and was 18 " . I really began searching for answers > when she dropped to 7 blocks off the growth charts in both height and > weight about 8 months ago(previously she was 3 blocks off and had > stayed there since birth. My doctor really didn't think anything was > wrong with her- even after receiving back abnormal blood work. I > spoke with a nutritionist and started her on at least 3-4 cans of > Pediasure daily as well as trying to get her to eat something aprox > every two hrs if she wasn't drinking a Pediasure. Her Blood Sugar was > running in the 50s after eating a large meal. She now weighs 22 1/2 > lbs and is 32 1/2 " which is 2 1/2 lb gain since her 2nd Birthday (her > head was in the 75th percantile for her age). I am wanting to know > if there are any parents that live in Oklahoma? How rare is this? > And basically what is next. To make my life even more interesting my > little boy was diagnosed with autism 3 wks ago. Anyone out there > please help with answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 hi alicia!! i just started receiving ssi benefits for christopher in november!! they said it could take up to 6m but luckly i got it within 3m of filing for it. they will just need you to give them all of your dr info which then in turn they will contact and get all her medical info which they will go over and decide if she qualifies. it also goes by your income as well (unfortunatly) my son gets a check each month and a medicaid card which even though we have insuracne it is nice because it covers his copays and at $40 a pop for a specialists it comes in handy. good luck. jodie (nicholas-6 nonrss, christopher-3 rss 23lbs 33 " ght genotropin .6, johnathon-9m nonrss) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Hi , The only " prediction " we have had is that " hopefully " we can get to 5'. She is only 13 yrs. We will probably not get that tall but she is more than precious. I've always been told, " Don't worry, God doesn't give us anything we can't handle " . Even though we feel overwhelmed, confused and stupid. All parents feel this way, even with " normal " size children. > Hi - So you have a Hannah too! My dad lives in Plano and we are in that > direction several times a year (if you are close maybe we could get together > sometime) Has anyone given you a projected height on how tall your Hannah > will be? Is there anyway to tell? Thanks . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 I tend to lurk but wanted to pipe in here. My son who is RSS has recieved SSI benifits since September 03'. We were approved right away but I hear that is unusual. From what I am told most people get denied the first time, then you have to appeal. Good luck > > From: Onamishnjordans@... > Date: 2004/04/02 Fri AM 10:38:11 EST > To: RSS-Support > Subject: Re: Re: New Diagnosis of RSS > > Mommy to Keigan 4-15-03 (RSS) and Tristian 9-26-01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hi alicia!! christopher just recently started ght and that is the only medication he is on and ever has been on. physically he is fine, just small for his age 23lbs 33 " he is 3, he recieves some very light OT from school but it is more for using scissors and such his scores for the OT evaluation actually were around his age or just off by a month. actually he thinks he is spider man. there is a possiblity that he is ADHD, but is too young to be tested yet. we live in NJ. feel free to email me if you like at jlcals2003@ yahoo.com(no space after @ and yahoo). i think it really depends on how well your doctors respond on sending them all your childs info so they have their whole medical history to look at and not just a couple of things to base their decision on. good luck jodie (nicholas-6 nonrss, christopher-3 rss 23lbs 33 " ght genotropin.6, johnathon-9m nonrss) Quote Link to comment Share on other sites More sharing options...
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