Guest guest Posted June 28, 2003 Report Share Posted June 28, 2003 Sue, Tell us more about your son. Was he IUGR or SGA? If he was, then he may or may not have RSS, but the treatment is basically the same. Have you checked out the MAGIC Foundation site? It is www.magicfoundation.org. You will see that RSS and SGA (small for gestational age) are now grouped together for this reason. It's not the label that determines the treatment. One or the other, the treatment is the same. My son Max is going to be 15 on Wednesday. He has RSS and if you have been reading the latest posts, you know that we are going through a tough time with him - again. Not all RSS/SGA kids go through what Max has and is going through, so don't worry that that likes ahead for you all. Where do you live? Is it possible for you to attend the MAGIC Convention in July? It's from July 24-27 in Chicago. It is not expensive to attend and you could possibly get a chance for Dr. Harbison to examine your baby and let you know whether or not RSS is the diagnosis. She offers free consultations, but there are not many spots left. You would have to contact one of the division leaders - I know that is on vacation, so you would have to get in touch with Katy. If you email me privately at magicrss @hotmail.com, I can give you her email address. Whatever you decide, you have found a great place for support and information, whether the diagnosis is RSS, SGA or anything else. Stick with your gut feelings, as other said, and eventually things will straighten out. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 --- My son has always been below on the chart for height, however in the past couple of months he has had a great growth spurt!! He will be four in July (july 27) and he is 40 inches and 38lbs. the doctor is VERY happy with this success. If you want to know anything els just ask Madonna In RSS-Support , " amanisay " wrote: > Dear Sure, > Weclome to our site, you will learn a lot from all the parents > and support we get. My daughter was diagonis 4 month ago with RSS > and this site and foundation have been a huge help in getting my > daughter to the right doctor and the right help from Early Invention > progam, from our state. > I belive that you should take your daugther to see a genetics and > she can let you know of for sure your daughter has RSS. > > We saw two genetics and they both gave us the same conclusion. > Good Luck, > Stella > > > > I am new to this list and I am in the midst of trying to get my 32 > month old > > diagnosed who I susspect has RSS. She has many of the features I > have read > > about but my Doctor says she does not have it because she is too > tall. She's in > > the 10% for height but is only 221/2 pds. > > > > Do any of your kids with RSS have height in the 10th percentile or > are all of > > these children not even on the growth chart for height? > > > > I have read so much on this list about diagnosis being difficult > to get and I > > know my Doctor does not have a lot of experience with RSS so I > thought I'd > > pose the question to this list. > > Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 Hi Sue, Welcome to the list! Yes, my son Colin (almost 31 mo.) is somewhere around 10-15%ile for height. He is on the chart, but you have to keep in mind his twin sister is 95%ile for height so obviously even though he has a milder case of RSS, he is far from where his genetic height should be. He is g-tube fed so his weight is usually around the 25% ile. Colin (RSS) and Hayden - 12/6/00 > I am new to this list and I am in the midst of trying to get my 32 month old > diagnosed who I susspect has RSS. She has many of the features I have read > about but my Doctor says she does not have it because she is too tall. She's in > the 10% for height but is only 221/2 pds. > > Do any of your kids with RSS have height in the 10th percentile or are all of > these children not even on the growth chart for height? > > I have read so much on this list about diagnosis being difficult to get and I > know my Doctor does not have a lot of experience with RSS so I thought I'd > pose the question to this list. > Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 > diagnosed who I susspect has RSS. She has many of the features I have > read about but my Doctor says she does not have it because she is too > tall. She's in the 10% for height but is only 221/2 pds. > > Do any of your kids with RSS have height in the 10th percentile My 18 month old daughter Miranda has was diagnosed by her geneticist as having RSS at 8 months of age. She is currently in the 40% for height and off the bottom of the chart for weight (very skinny). The geneticist has questioned her diagnisis due to Miranda's nearly average height, but she has so many of the " features " of RSS one is compelled to believe it. (Low birth weight, low blood sugar, blue schlera, curved pinkies, hip dimples, asymmetry, large head, small triangular face, low set ears rotated toward the back, low muscle tone, downturned corners of the mouth). Both I and the geneticist have tried to contact Dr. H for her opinion, but have never received a response. Oh well. Miranda's appetite is reasonably good, but she never seems to put on any weight regardless of how much she eats. However, she is fairly healthy and while she is running a bit behind the curve in gross motor skills she seems to be responding well to physical therapy. She's doing fine on the fine motor skills and learning. She's recently started counting to 4. Elaine Proud mana of Miranda RSS, and Dorothea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Ja' Aryn is 6 yrs old she is 39 inches tall and 32 pounds. She has started complaining about headaches. Are there any parents out there with kids 6 and up complaining about headaches. She is RSS also contact me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 My daughter is 19 months old 30inc. and 16lbs. She is in the 10th perc. for height and has RSS> Most of the children on this listserve received a diagnosis from and Endocrinologist or a Geneticist. My pediatrician ( who we love) had never heard of RSS. This is a great group and I'm sure others will respond if they haven't already!! Dayna, Mom to Alyssa << >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Lindsey is also the 10 percent for height and she's less then the third percent for weight.At 7 she is 45 1/2 inches and 36 pounds. The genetist that diagnosed her said she has RSS,and if it wasnt for her father being 6'3 she would not be this big. In March we got a second opinion and she said she wants to look into other things since she is on the chart. This was a biggie with her. So I still don't know what to think. Jennie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Is your child on growth hormone? Pattie > Ja' Aryn is 6 yrs old she is 39 inches tall and 32 pounds. She has started > complaining about headaches. Are there any parents out there with kids 6 and up > complaining about headaches. She is RSS also contact me (225) 357- 5784 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Is your child on growth hormone? Pattie > Ja' Aryn is 6 yrs old she is 39 inches tall and 32 pounds. She has started > complaining about headaches. Are there any parents out there with kids 6 and up > complaining about headaches. She is RSS also contact me (225) 357- 5784 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 hello, I would like to suggest to the mum concern about her doughter headache to maybe test if she has any food intollerance, somentimes certain food can give this kind of side effects! mum of Francesco 7 yo --- pswmjp pattie@...> ha scritto: > Is your child on growth hormone? > > Pattie > > > > > Ja' Aryn is 6 yrs old she is 39 inches tall and 32 > pounds. She has > started > > complaining about headaches. Are there any > parents out there with > kids 6 and up > > complaining about headaches. She is RSS also > contact me (225) 357- > 5784 > > > > > > [Non-text portions of this message have been > removed] > > ______________________________________________________________________ Yahoo! Mail: 6MB di spazio gratuito, 30MB per i tuoi allegati, l'antivirus, il filtro Anti-spam http://it.yahoo.com/mail_it/foot/?http://it.mail.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 Thanks so much to all of you who responded to my question of the height of RSS kids. We were out of town all week so I just tonight read the responses. Most recommended I see a geneticts doctor or an endo but here's my situation. My regular pediatrician referred me to an academic pediatrician at A.I. Dupont Hospital in Delaware. This Dr. initially agreed with me that my daughter had a lot of the characteristics of RSS but said he had little experience with this so he would discuss it with the endos and genetic Doctors at this hospital to find the one who has seen the most RSS kids. Then he called me a week later and told me none of the doctors thought she had RSS because of her height. I left several photos with him to review with them. Also my daughter is adopted from Russia so I don't have a height for her birth father but know her birth mother's approximate height. My Dr. now feels my daughter is just small but everythin is probably ok, he had tons of blood taken for various tests. After hearing from several of you that there are RSS kids in the 10% for height I feel I must get another opinion. I live in the Philadelphia area and was wondering if anyone could recommend a Doctor around here who is very familiar with RSS. I am contemplating going to Dr. H as she's only a couple of hrs away but thought I'd ask this of the list first. Thanks so much, this list is GREAT!! Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 Have you taken your daughter to Dr. over at DuMont? He is a geneticist, very active in LPA, and the one to confirm Max's diagnosis of RSS. He is a kind, gentle man with a lot of compassion. He does not follow Max anymore because we don't need a geneticist, but I still remember the visits to him and his friendly, supportive manner. Jodi Quote Link to comment Share on other sites More sharing options...
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