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Russell-Silver Syndrome
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Welcome to the Russell-Silver Syndrome / Small for Gestational Age/ Intrauterine Growth Retardation- Message Board.
Please read before posting messages:
My name is Danielle and I am the moderator of this Board.
Messages which are posted via the form at the bottom of the page are emailed to me. Neither your email address nor name are known to me and will not appear anywhere unless you list them. (NEVER-post your last name or personal information. Instead, use something like---Jamie/Georgia so people can identify your message.) We take privacy seriously.
When I check my emails I will verify that they are appropriate (not sales stuff etc.) and then post them. If you have any difficulties, email jamie@magicfoundation.org.
If your child has another specific medical condition or an insurance problem, you may benefit from looking at/posting to the other message boards.
Remember comments posted here are family concerns not medical advice. Always contact your child's doctor for medical information prior to making decisions. Thanks!
As all of this effort does take funding to keep going- if you find our site helpful, or you feel that we help you, please consider donating $5 to help us keep going. Go to:https://magicfoundation.org/www/docs/908.1530/ and donate in the name of your child! It is tax deductible- thank you!
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On May 07 2008, Kim Wrote:
Hi this message is for Randi. I am mom to Sean who is 2. We live in a neighboring county of Philla. I'd love to network with you.
You can email me at r3sunz@comcast.net
On Apr 27 2008, anonymous Wrote:
On Apr 27 2008, Mary Jo Wrote:
Introducing myself & looking for some support/answers. I'm Mary Jo; my husband & I live in NY & we have a 5 month old son, Gregory who joined us after a complicated pregnancy & 3 months of bedrest when I was diagnosed w/ IUGR. He was born at 36 weeks; weighing in at 3 lbs, 7 oz; subsequently diagnosed SGA. He's currently 10 lbs & it's been a huge struggle to get him there. We have an endo who is NOT happy with my decision to try to breastfeed our son, a ped who is ambivalent, a GI who supports my decision, and several other varying opinions (speech pathology, PT, ped, LC, etc. etc.).
Gregory gained very well (1+ oz/day) from birth until he was about 2.5 months old, then suddenly stopped gaining well & cut his intake in half (also cut how many wet/soiled diapers he produced & his typical weight gain by half). It's been a very scary road since then & I'm desperate for more help, ideas, etc.
Has anyone successfully breastfed an SGA infant and still managed to get him/her to gain weight, or is formula the answer? Please email me at maryjopv@hotmail.com with any input or suggestions; I'd be most grateful for your responses!
On Mar 25 2008, Randi Wrote:
Hi my name is Randi and my daughter Lily is 1 year old and was diagnosed with RSS by Dr. Harbison 4 months ago. I live in the Philadelphia suburbs and am looking to connect with any parents of affected kids in my area. I also have some questions about g-tubes. Lily has had an NG tube for 4 months, and we are trying to schedule the g-tube surgery. How long is the recuperation for most kids? How long are they in the hospital? We are planning to do it at Mt. Sinai so Dr. Harbison can care for Lily.
On Mar 07 2008, Tammy(Jonathan's mom) Wrote:
Hello, my name is Tammy and my son, Jonathan was diagnosed with RSS when he turned 4. He is now 5 years old and doing well on the growth hormone.He has grown over 6 inches and gained 10 lbs in one year.He still is delayed in speech and gross motor, but he seems to be making great gains. I have two concerns, one being that he still struggles greatly over the nightly shot.I was led to believe that the shot wouldn't be such a big ordeal after a couple of months. Are other parents having this same issue? My second concern is that my son is very, very active and has to make physical contact much of the time with whom ever he is engaging with. He doesn't seem to understand the concept of personal space. He just gets so excited about everything.Lately, he has become moody, very oppositional, throws tantrums that become physical towards us, and so on. We took a trip in January and forgot his GH.He went a week without it. His behavior was defiant, aggressive, and very disrepectful. Things that were not like him. After two days back at school, we got a call from his preschool teachers with the same concerns. A week after being put back on the hormone he was back to normal at school and much better at home, but not totally like he was before. I tend to believe that it had something to do with being off the GH, because his behavior was 5 times worse during the week without it.Does anyone have a RSS child that is very excitable and very active?
Thanks for taking the time to read this!
On Feb 21 2008, anonymous Wrote:
Behavioral issues...RSS MUPD7 3 yr old boy
Hi! Alex, my 3 yrd old grandson's teachers have said he recently has been exhibiting 'aggressive and moody' behavior. We (parents and gparents) have noticed similar behavior...the 'big' question in the back of our minds was could it be the GHT? Alex has also gone thru (since the beginning of the year) some fairly big changes in his life, including; a new classroom, new teachers, new school nurse, not riding his beloved school bus anymore and including increase in GHT in Jan. at Dr H's appt. The school mentioned it could be because he's an only child and doesn't want to or know how to share..? We feel it is probably a combination of several factors.
Alex's mom emailed Dr. H this week about the behavior. Dr H's response was--"The behavior is not the GH. Some of it is probably that he is realizing that he is small and different and is reacting to this. Additionally the MUPD 7 boys frequently have attention issues in school especially if they have productive language issues." So, we've sighed a big sigh of relief and are now wondering how we can 'help' him thru this. Anyone else going thru/or have gone thru this?
Also, when it comes time to potty train (not really there yet) any hints? His feeing tube is taped to his diaper, so it's impossible for him to pull down 'big boy pants or diaper'. The tube is taped to keep it from pulling directly onto the button if it gets pulled. Dr. H had mentioned the 'bone' and to ask about it online, because she wasn't familiar with it, but had heard it was helpful....
thanks again!
On Feb 07 2008, anonymous Wrote:
Crystal - I think when you refer to the "tests" you are referring to the standard lab tests when beginning growth hormone therapy (GHT)? Before beginning GHT, the endocrinologist typically will run blood tests measuring specific things like insulin, glucose, and other items. These lab tests are then run once a year, and monitored during the course of GHT to make sure that no negative side effects occur.
However, you should also contact your physician to find out if he or she has already signed off on GHT, or if instead, the test that s/he is referring to is a GH stim test. If it is the latter, please write Dayna at daycarney@everestkc.net or myself magicrss@mindspring.com so that we can give you more information. The published medical research is unanimous in that unless an RSS child shows symptoms of also being growth hormone deficient, there is NO reason to put the child through a GH stim test. This is because most RSS children will test normal on this test, and yet their response to GHT does not differ at all from those RSS children who are also GH-deficient. I hope I am making sense.
So call and ask if your child is getting the normal pre-GH standard bloodwork, or if the physician is referring to an actual stim test.
Jennifer
On Feb 07 2008, Tricia Wrote:
Danielle and Shannon,
I'm also in Indiana. My son, Zane, has been under the care of Riley since birth. He is now 5 yrs. He began rhGH at age 4yrs. 4mo. and is doing amazing (sometimes I fear growing too fast!) He is SGA. His endo said many characteristics of RSS, but never refered us to genetics. This is my first time on this message board. What a coincidence with your current topic! We have just switched endos. Our first appt. with Dr. Riggs is in April. I'm so excited for a fresh view of Zane's case. Especially after reading your post! I'm very excited to see what he has to say. Zane being 5yrs. old now, I'm not sure if a visit to the genetics dept. is even something we need to pursue (I wish I had known, or been told more, when he was an infant). Zane still eats very poorly (but so much better with rhGH), but he is finally gaining weight. We have fortunately avoided the g-tube scenerio, but not by much. I just wanted to let you know I'm around and that I may have questions from time to time re: Dr. Riggs and possibly Dr. Escobar. If you have any questions, please feel free to ask!
On Feb 06 2008, Shannon, Gretta's mom Wrote:
Danielle, thanks for your comments. Would it be ok if I called you? If so, please email your # to me at shanjosmith@yahoo.com. I have some questions for you about Dr. Escobar.
On Feb 05 2008, Danielle Wrote:
Hi Shannon,
I am Danielle, Coby's Mom. We live on the north side of Indianapolis. I can give you the names and numbers of the doctors that I take Coby to see. You can also get a list of doctors thru MAGIC.
Coby's RSS traits are mild so when we first saw Dr. H at the convention she agreed that seeing him there once a year was plenty. She gave us a plan and our local endo follows it as long as he agrees. And so far it has worked out great.
Dr. Luis Escobar, Genetics and Developmental Pediatrics at St. Vincent’s Hospital in Indianapolis heads Coby's care. He refers us out to other specialists and keeps track of what all the other doctors are doing. In my opinion Dr. Escobar is Indiana's expert in RSS. He recognized Coby’s RSS at just a few days old and we have been seeing him every since…I love him!!!
Our Endo, Dr. Andrew Riggs, is also at St. Vincent’s Hospital. I really like that he stays up to date with all the latest research and developments in growth hormone and he always seems to be headed in the same direction as Dr. H. He gets the videos from the convention each year and watches them as well.
Dr. Escobar - 317-338-5288
Dr. Riggs - 317-338-3100
If there is anything else I can help you with please do not hesitate to ask.
Danielle
On Feb 04 2008, Crystal Wrote:
Hello I am new to all of this. I have been taking my son to the doctor for a year now trying to find out what is wrong with him. We were referred to a geneticist, he sent my son to the Endocrineologist. My son will start taking the growth hormone in July after they do more test on him. I found out last month that he does have RSS and would like to know what are the test that they will be running on him when he goes back in July. If anyone can help me understand what is going on with my son other then that he is small for his age please feel free to cantact me at hazeleyedbeauty1177@yahoo.com. My name is Crystal and my son's name is Emmanuel.
On Feb 04 2008, Shannon, Gretta's mom Wrote:
I was wondering if anyone can give me the name of a good endocrinologist in my area. I think I need to look for a new doctor. Right now Gretta's specialist doctor is a neonatologist and geneticist but he doesn't seem to know a lot of what I am learning through the Magic foundation. I live in Winchester IN which is east central Indiana. The closest large cities to me are Indianapolis IN, Ft. Wayne, IN; Dayton, OH; Cincinnati, OH; or Columbus. I’m just looking for a doctor who seems to be in tune with the information I am finding on the magic foundation. I know that Dr. H. is the best doctor to see and we may look into seeing her once a year, but I was hoping there was someone closer who knew something about RSS too. Thanks!
On Jan 22 2008, Mandy Haworth Wrote:
Shannon, The convention is a magical time and everyone gets so much from it all the kids that are there are in the same boat and for one long weekend in the year they are "normal". They get to mix with others who are just like them and make so many new friends. I really think it would be good if you could take Gretta & Noel with you to convention. There will be so many other kids there.
Look out for us there, my husband Carl is 39 in a few weeks and he is RSS also. We're flying over from the UK and would not miss it for anything. If you want to get in tough with us we are on the Networking list or ask Dayna or Dianne for our email.
On Jan 12 2008, Shannon, Gretta's mom Wrote:
Hi, I wanted to let you know how much I appreciate this message board and all of the information I can find on the MAGIC website. I am new to the magic foundation. My 2nd daughter, Gretta is 17 mos old and weighs 15 lbs. She was diagnosed with RSS when she was 7 months after continual struggles to help her grow and a very hard winter where she contracted RSV and whooping cough. In the past 10 months we have kept Gretta on a high calorie diet using a powder called DuoCal. It dissolves quickly in baby food adding 180 calories to every 4 oz jar and we even sprinkle it on table food now. Recently I have become concerned whether or not this is the right approach. A friend told me she had read that high calorie diets can cause more damage than good in the long run for kids w/ RSS. My doctor even encourages me to use chocolate syrup in her milk and sugar in her juice. She is drinking half & half for mild and we put butter on everything. Does this sound typical? Are you all doing this too? Another question I have is about Gretta’s walking. My other daughter, Noel, sees a physical therapist regularly. Our PT says that Gretta is a mystery to her. She is able to stand up without putting her hands down on the floor, yet her walk is still the maturity of a 12 month old holding her hands high in the air frequently to maintain balance and she falls down so much. I feel sorry for her. Gretta does have one leg slightly shorter and we are considering making the sole of her shoe thicker. Lastly, my husband and I are planning to attend the convention this year and we thought we would leave the girls home with grandparents. Will we be sorry if our 2 and 3 year old aren’t there with us?
On Dec 28 2007, Kelly McIntyre Wrote:
Hi, my name is Kelly, mom to Molly, 3 1/2 year old with RSS and mitochondrial disease. We live in Syracuse, NY. My husband and I are currently looking into growth hormone. She weighs 17 pounds and she recently has begun to level off with her growth. Does anyone know of a doctor who specializes in RSS and what is your experience with the use of growth hormone? We are concerned about long term affects of the use of growth hormone. Any advice you could give would be great. Also, the daily regiment of administering the growth hormone and side effects would be helpful as well. Thanks!
On Oct 25 2007, Alisa Wrote:
My daughter was born SGA and this website and the IUGR Yahoo group site saved me. I was feeling pretty down about the whole NICU experience and alone, not having answers or anyone I could relate to in real life. I want to thank all of you involved in this website from the bottom of my heart. I will try to make one of the conventions next time.
On Oct 16 2007, anonymous Wrote:
I have a 3 year old daughter with RSS and I absolutely love this web site. It answered and help me think of new questions to ask when we go for a follow up at the end of next month. I would also like to hear more on the RSS convention. Before coming to this site, I haven't really heard much on RSS groups. It's good to know that there is support out there, especially with parents with kids that have RSS.
On Sep 25 2007, anonymous Wrote:
Hi, my name is Stephanie and I have twin girls the age of 3. Savannah was diagnosed with RSS inutero (CVS & amnio), which was confirmed by the our pediatric genetics MD shortly after I gave birth. I live in South Florida (Southwest Broward County) and was wondering if there are any RSS parents in my area that would be able to assist me with information regarding schooling for Savannah. Thanks.
On Sep 14 2007, Danielle, Coby's Mom Wrote:
The diagnosis of RSS is still a judgment call on a physician's part because there is no definitive lab test that can answer yes or no in a specific case. Doctors generally base their diagnosis on characteristic and clinical findings that make up the RSS phenotype.
Generally, it is a Endocrinologist that makes the dignosis of RSS. However, my son was diagnosed by a genetistist. It is important to find a doctor in your area that is educated on RSS.
As I told Amber you can call our national office at: (708) 383-0808 ext. 200 and ask for the names and numbers of physicians in your area.
If you have any other questions please don't hesitate to ask.
On Sep 14 2007, Danielle, Coby's mom Wrote:
Hi Amber,
Our national office does maintain a list of Pediatric Endocrinologists (we are aware of) from throughout the United States and other countries. However, this list is constantly changing. Feel free to call our office at: (708) 383-0808 ext. 200 and ask for the names and numbers of physicians in your area.
Please let us know if we can help in any other way.
On Sep 13 2007, anonymous Wrote:
Hi, My daughter may have RSS. She has delicate features, one ear different, blue tinge to whites of eyes and weighs 8lb 9oz at 5 months. I had iugr pre birth. Would love to hear from anyone who can advise how diagnosis is made, and if there are actual tests to confirm RSS. Thanks and love to all.
On Sep 13 2007, anonymous Wrote:
Hi
my name is Amber and I am looking for some help. I live in Canada near Toronto and my daughter is small for her age. She is now almost 3 and is 23 pounds and 32 inches tall. Both myself and husband are tall. Her doctor has ran many tests on her but cannot explain why she is so small. I found the Magic foundation myself and I feel that she is sga. I was wondering if anyone knows of a doctor in canada near toronto that can help us. There seems to be no information here in Canada.
On Sep 05 2007, Danielle, Coby's mom Wrote:
Hello All,
I hope everyone is enjoying their summer and surviving the back to school rush!
I just wanted to remind everyone that it is that time of year again, time to start planning our annual Walks for MAGIC fundraisers.
I have done a walk for the past 3 yrs and would be happy to answer any questions you might have about getting started on your own walk a thon.
We have always had a great time and every contribution really does make a difference.
On Sep 05 2007, anonymous Wrote:
Shriners Hospitals are free FYI- there is contact information (free ortho as well as genetics screens) for the Shriner's Hospital in the MA area in this website in the additional resources area. They are always a great resource and lifelong free care to those who qualify. But you need to have the recommendation of a local Shriner to "get in" their system.
On Aug 21 2007, Dayna Wrote:
Regarding Shoe lift repair. Try a local shriner's hospital, cobbler or childrens hospital.
On Aug 21 2007, Dayna Wrote:
Katy,
Many RSS/SGA children go into adrenarche early. This is the hormonal changes that occur before puberty. During this time many children's bone ages, once previously delayed, will begin to RAPIDLY advance. This is very problematic as it is the bone age that predicts when growth will stop. Once bone plates fuse together at the end of puberty, a child cannot grow anymore. When a bone age rapidly advances the RSS/SGA child reaches this point sooner. An aromatase inhibitor (like arimidex) can greatly slow down an advancing bone age. The medication is not FDA approved for this use. I can tell you my own experience. My daughter got underarm odor at about 2 1/2 by 4 blood tests revealed she was in adrenarche and her bone age was nearly 2 1/2 yrs PAST her actual age. She began taking Arimidex, we've noticed no side effects, and her bone age has only advanced 3 months in an 18 month period. It is important to not that girls MUST stop taking an aromatase inhibitor once they begin puberty. At that time a family can choose an LHRH analog (like Lupron) to stop puberty and gain additional growing time by continuing to keep the bone plates from fusing. I hope this helps!
On Aug 16 2007, anonymous Wrote:
Hi Ginger and all RSS families,
I understand your frustration about communicating with others during the convention, and I apologize for not figuring out a way to make this work better for all the families attending. I will make sure your suggestion is passed on to see if there is a way we can make the communications better at future conventions. We did receive a few other comments of similar nature so we realize we must do something to help network the families more closely at the convention. Thanks for your input!!
Mary Andrews, CEO/Co-founder of MAGIC
On Jul 31 2007, anonymous Wrote:
Katy, When the bone age advances rapidly it usually means that andrenarche or early puberty is beginning. Is there body odor? pubic or underarm hair? breast buds? There are medications that can slow or stop puberty until it is appropriate. An early puberty means that growth will stop early too.
My daughter (RSS) did the same thing. ( It is not unusual for RSS children). She's been on Lupron since she was seven - she's now almost 11. There are blood tests that can show if they are entering puberty. Her Dr plans to take her off the medication in the fall and let puberty begin. The Lupron has worked - stopping puberty and slowing the bone age advancement. She has had those extra years of growing time (she's also on growth hormone - since she was three.)
There is a more active list serve: RSS-support@yahoo.groups.com. You will find a lot of answers, support and comfort there.
On Jul 28 2007, Katy Wrote:
Hi, I'm Katy....I'm an Iowa RN (I know, irrelevant except it aids in my research sometimes.) My granddaughter is, apparently, RSS/SGA and is now 6 years old and also lives in Iowa.
Mayo will not diagnose even though she's pretty obvious (I have no faith in Mayo on any level.) This year's physical is the first the doc suggested growth hormones "either now or wait until after next year's visit" because she had grown,but lost a little on the 'charts' and a little thinner for her height than two years ago. But her bone age used to always be months behind her real age which is good, but now it is ahead of her real age by 9 months.
If I'd known about the convention this year we'd have been there. Will there be any materials available from the convention for those of us who missed it?
If this is the only place to interact on this website.....any advice for us? Thanks!
On Jul 27 2007, Ginger (mimi (grandmother) to Alex, RSS 2 1/2) Wrote:
Thanks to everyones' efforts to make this year's conference a success! It is wonderful to see new and familiar faces!
This is my 1st message on the board/group/listserve? (I read the emails, but haven't ever used this form to communicate)
I would like to suggest some type of communication/message board to communicate family to family at the conference, ie, "I'm Alex's (2 1/2 RSS) grandmother and have _________ issues. Would like to visit with other families parents who have had these similar issues. I'll be in room A at 10:00."
I mentioned this at the convention and the response was there is a message board on-line. While the on-line board IS a great help, there are a lot of people who don't know how to use it, don't have a lot of time to spend on line, don't have a computer. The tables are set up 'colorwise' which helps put families face to face, but often times people are either too shy, or too much activity (bingo, fiesta) is going on to really be able to have a serious and informative discussion. So perhaps a message board would help ...
Once again....thanks so much for all you do!
On Jul 25 2007, anonymous Wrote:
I was wondering if anyone knew of a good online company to get shoe lift repair work done. Thanks for your help!
On Jul 24 2007, Maggie Sievert- Oma to Devan,Tyler,and Rori Wrote:
I am the grandmother to Devan Hanks, age2, RSS,UPD7. I just wanted to thank MAGIC for a wonderful convention at the Westin! We are just getting laundry done, catching up on sleep, and holding the "glow". This was our second year and I needed MAGIC to know how greatful we are for having you all in our lives. We learn so much from you and especially from the other families that attend. My grandchildren had a ball!
It gives us renewed hope for Devan!
We will certainly be there next year!
On Jul 17 2007, anonymous Wrote:
URGENT- if you are planning on attending the convention- please call the hotel to make sure your reservations are in tact. Call: Malia at 847-777-6500 (unless you have spoken with her in the past 3 days) to confirm: refrigerators, roll-a-ways and cribs!
On Jul 15 2007, anonymous Wrote:
For clothes for very thin kids -
Gap For kids has the skinniest slim sizes I have ever seen. They're expensive but they work for our thin children
On Jul 13 2007, anonymous Wrote:
Rick,
Places like the Gap, Old Navy & the Children's Place often have "big Kid" clothes in small sizes. They tend to have grown up clothes in even infant sizes and especially toddlers!
Good Luck!!
Dayna
On Jul 04 2007, Rick Wrote:
Does anyone have any suggestions on age appropriate clothing for a 9 year old with RSS who is small? My son hates wearing what he calls "baby" clothes.
Thanks!
On Jun 26 2007, Jill Wrote:
Magic Foundation changed my life. I stumbled across it on the internet when I was trying to understand why my 4 year old was not catching up as he should (born at 28 weeks, 1lb, 14 0z). He was born in Boston at Brigham and Womens and we were so lucky to have that staff of talented people. Once I discoverd Magic I felt armed with information and resources. I went to town and got on the phone with my doctor, then an endo, then my insurance, etc. I am so happy to report that my son is now 6 1/2 and is finally on the charts! He weighs 42 lbs and this Summer he looks wonderful! He has been on Humatrope for a year and a half and I have to say that this has been a miracle drug for us. It not only helped with height, it helped with weight and I swear everything else like sleep, learning, and energy went along with it. He had a developmental delay and was on a plan at school. He is now off of that development plan and moving on to 1st grade with no assistance needed and in his school picture he looks just like the rest of his classmates (always someone bigger and smaller--but he's right there with the rest!). Thank you Magic Foundation for changing my life and helping me to figure out what was such a mystery for so long! For those of you who may be new to all of this, reach out to others. It makes all the difference in the world! We are here to help and support others!
On Jun 26 2007, Carl Haworth, Plymouth, UK Wrote:
My name is Carl, I have RSS and am 38 years old from Plymouth, UK. Me and my wife will be coming to Chicago next month for the convention. Very interested to read Judith's comments that Jason experiences OCD. I have had really serious spells of OCD in the past. Before I left home I would stand in the kitchen at my parents house for 45 minutes to an hour checking that plugs were switched off, doors locked and windows shut. This went on for a long time and was about 20 years ago so before the WWW. I am mostly OK now, although I do still hoard things (CD's, books, clothes etc). Mostly I have overcome this. Judith if you want to contact me my Email address is carl_southamptonsaints@hotmail.com. Maybe we'll meet at the convention.
On Jun 26 2007, Rosie Osborne Wrote:
I am so glad there is this group message board now, I have a 6 year old with SGA she only weighs 26 pounds and a little over three foot tall. She can wear 24 month clothes. It is good to hear that I am not the only one that has to watch their child struggle with this problem...
On Jun 22 2007, Jamie Wrote:
FYI- MAGIC is working on establishing a new message board for everyone (all disorders) which is about Insurance issues. It should be up next week. If you have questions, personal experiences which you can share to help others-please look out for this Board and post so that families can finally get some real help from those who have been there! If you have a problem, feel free to post it...I am sure you will not be alone!
On Jun 20 2007, Laura Wrote:
Hola me llamo Laura,y tengo 22 años y sindrome de Silver Russell,me lo diagnosticaron a los 17 años,hace casi cinco años me sometí a alargamiento de tibias,de la cual estoy muy contenta y he crecido 10cm,ahora me estoy recuperando pero todo va muy bien.
Hay un grupo de apoyo en yahoo del cual hay una persona muy especial que es Megan, a la cual le agradezco mucho.
Ahora estoy escribiendo un libro(Un ángel llamado Esperanza),si alguno de los miembros quiere participar contando la historia de su hijo/a yo encantada,pero si puede ser antes del 1 de septiembre,besos a todos.
Laura (España)
On Jun 19 2007, anonymous Wrote:
Hello everyone!
My daughter is 4 years old and is SGA. She was not diagnosed until she was 3 years old. We struggle with eating and managing hypoglycemia on a daily basis. We attended the convention for the first time last year and it literally saved her life. I have made so many long lasting friendships here, and the information and resources are invaluable! We met Dr. H at the convention last year and now she is a secondary endocrinologist on Jordan's "team".
On Jun 12 2007, anonymous Wrote:
Team Lapish is here!
Glad to have a message board @ MAGIC.
Hope to see everybody in July @ the convention.
It will be here before we know it.
Dan, Jenyfer, Tully, Pippin (RSS) and Ryker
On May 30 2007, Saskia Wrote:
Hi, my name is Saskia and my son has been diagnosed with Rss one week after birth. He is now 7,5 months old.
I just wanted to say hi from the Netherlands and say thank you to Magic for all the info.
About the excema, my son had a very dry skin after birth, that turned into excema (cowmilkallergy etc).
Now we have it (mostly)under control by using ABC dophilus powder, probiotics and allergycare formular. (hopefully i used the right words)My daughter (non rss) has also excema since babytime, so i don´t think it´s (at least with my son)RSS related, but that´s just my thinking.
No toenail experiences..sorry.
On May 24 2007, Kim (rddeppy) Wrote:
I'm Kim mom to three boys. My youngest Sean Patrick is almost 18 months and was diagnosed with RSS in the NICU. We've never been to see Dr. H but will at the connvention. Sean was born at 36 weeks and was 3#12oz and 16.5 inches long.
On May 23 2007, Megan Wrote:
This is Megan again, I forgot to add we have a Spanish speaker support group.
Soy Megan, olvide agregar que tenemos un grupo de apoyo en ESPANOL :)
esperemos verte alla!
http://espanol.groups.yahoo.com/group/apoyosrsrss/
On May 23 2007, j. mom to A. Wrote:
Thank you again to the Magic Foundation for your resources. I wanted to alert to everyone that BCBS had denied continuation of GH for SGA this is a serious issue and we are fighting it. It will impact us all in the long run due to the fact that insurance companies like to follow the trend. Let's band together please
On May 23 2007, Judith Wrote:
Hi all,
I am a semi-regular posted on the yahoo group (when I have time) and just wanted to say hi here too. My son Jason is now 7. He was diagnosed RSS at 13 months. We are very lucky to live in NY about 40 minutes north of NYC. We are able to see Dr H on a regular basis. Jason is also PDD and OCD. Since starting GH 3 years ago, he has grown approximately 1 inch per quarter (12 inches in 3 years). He is now the same size as his twin sister. He is also eating way more (watch out ice cream bowl)!
On May 23 2007, anonymous Wrote:
I have a 13-year-old son with RSS. The MAGIC Foundation has been very helpful to us over the years, and the annual conventions in Chicago are an amazing experience - both for learning and meeting great people with similar issues who can understand what you deal with on a day-to-day basis. If you have an affected child, this is definitely the place to get answers to all your questions. For some of us, discovering the MAGIC Foundation has saved our children's lives.
On May 23 2007, Jody Gough Wrote:
Hi
My name is Jody, I have a 5 yr old with Russell Silver Syndrome, we live in Australia.
I have always relied on the magic foundation and its members for support and information.
We do have a small RSS group in Australia.
Very happy to correspond with new members especially in Aust
On May 22 2007, anonymous Wrote:
Will the Guide Book be ready by convention? I hope so. The local doctors are asking about it and looking forward to hearing what is new in the RSS/SGA world
On May 22 2007, Megan Wrote:
Hi,
I am Megan, mom to Emerence, 4 y/o SGA. Just wanted to say hi and let everyone know that after a year on GH she has put on 13 lbs and 4". However her IGF1s are way too high and we have reduced her dose 3-4 times to the lowest we can. Anyone with kids with double the high end of IGF??
We are in Massachusetts.
On May 22 2007, anonymous Wrote:
Hi, My name is Lisa and I'm in the RSS Yahoo group. I've never posted there; just "lurked" to find relevant information for my daughter. I thought I'd respond to the request for posts on this site.
There are two things that my daughter displays that I've not seen addressed on the RSS board. She has eczema and thickened pinky toenails, both since birth (she just turned 3). We're in Florida and my geneticist can't relate these two things to RSS. Does anyone else's child have these along with RSS? Thanks!
On May 22 2007, Dayna Wrote:
HELLO! Welcome to the MAGIC FOundation!! My name is Dayna and I am the co-division consultant for the RSS/SGA Division!! I want to welcome you!! My daughter ALyssa, now 5 was diagnosed at 9 months. She was born at 35wks at 2lbs 8 oz. It was a long 9 months trying to figure out why she wasn't catching up and why I was the ONLY one worried about it!! Finally, our 3rd pediatrician recommended a growth specialist that diagnoses her. The doctor gave me 2 pieces of paper when I left her office in disbelief and one of them was MAGIC's website. I don't know where we would be without the education, knowledge and support we have gained. I hope you find what you need too!!
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