Has anyone ever heard of Russell Silvers Syndrome? It's a form of dwarfism that my sons geneticist seems to be fairly certain he has. It actually seems to be kind of manageable, where kids can grow to be just a little shorter than average adults with 10 years of growth hormone injections.
I'm just wondering if anyone else has heard of this?
Also I thought I would update a recent pic of my sweet jewel baby. Here's Rocky 
He's 4lbs 5oz now at 2 months old, and the sweetest little baby!
pomegranate / 3601 posts
@anonysquire: I am of no help with the RS syndrom but your little boy is beyond precious! I do have a friend that had to have growth hormone injections all throughout her child and adolescent years and she turned out to be a petite but normal sized adult. She now has a normally growing son as well.
grapefruit / 4045 posts
@anonysquire: I have no info to offer, but wanted to tell you that rocky is adorable! That's a great picture.
kiwi / 698 posts
I work in early intervention and had a child on my caseload with RS syndrome several years ago. The child was about 3, and doing great. Certainly on the small side, but developmentally was at age level with peers in all areas. I was simply monitoring based on the fact that it was an established diagnosis. I worked with the family for a short time and on a very limited basis, so don't have a ton of info re: the growth hormone injections/prognosis. Sorry I don't have more info for you!
Your little guys is so adorable!
wonderful clementine / 24134 posts
Hes adorable and I'm glad you have a diagnosis.
I have two family members who just went on growth hormone injections. Their kids tolerate it really well except for some minor bone pain from growth.
cantaloupe / 6923 posts
Thanks everyone! It's nice to hear that maybe the shots won't be as bad as in thinking they are haha!
coconut / 8079 posts
@anonysquire: He is the absolute cutest! What a great pic! I have no experience, but I hope you continue to get great care for your little one and find the resources you need. 
eggplant / 11824 posts
No insight on RS, but we do have a very close friend whose son (now 14) has been on growth hormone injections for about 5 years for height. He was quite small and is now not huge, but very much within the normal range for height for his age - the difference the shots have made has been really amazing. I know in his case the shots have absolutely been no big deal; he doesn't mind them and hasn't had any issues from the shots. Good luck!
blogger / pomelo / 5361 posts
Like others have said, no experience with RSS, but my friend's son has done great on growth hormone injections. He was older when he started (maybe 10-ish, it's been a few years, so I can't remember), but it worked well and didn't seem to have many side effects.
kiwi / 578 posts
No experience with RS, but there are two cases of XLH on DH's side. They had to have surgeries which were quite painful, but both are tall enough to drive normal vehicles and haven't needed to build a lot of adaptations into their homes.
Your wiggle worm is so cute!
cantaloupe / 6923 posts
@azjax: was it leg stretching surgeries? Ouch!!!!
I guess I didn't even know that you can just ask for injections if you are short? Is that what happened with your friends? @yoursilverlining: @Mrs. Blue: so interesting!!!! I'm hesitant to say yes to them. But I'm sure that my son will want them? I don't even know!! How do I even make that decision when I'll probably have to start them around 10-11 months. Ugh!!!
blogger / pomelo / 5361 posts
@anonysquire: My friend's son was well below "normal" for his height. He was about the height of his younger brother who was three years younger at the time. Because he was so far off the growth chart, their pedi recommended this course. He had a fairly severe seizure disorder that required him to be on a pretty insane diet as a little bitty kiddo. It helped immensely with the seizures, but the doctors felt like it probably stunted his growth during those years. So, he started the shots at an older age when he hadn't ever caught up on growth. I don't know exactly where he falls in height compared to his peers now (we don't live in the same city anymore), but he is definitely in the "normal" range now.
I have no advice on making that kind of decision. What do you feel are the pros and cons for him getting the injections?
cantaloupe / 6923 posts
@Mrs. Blue: oh I see!! That makes sense being off the growth curve so far. And I really haven't looked into it enough. I guess the only thing in worried about right now is will be think I didn't think he was perfect enough so I wanted him taller? Does that make sense? I haven't even researched them. I'm just trying to take it all in.
@avivoca: thank you he's such a sweet little thing!
eggplant / 11824 posts
@anonysquire: Somewhat similar to MrsBlue, in our friends’ case, it wasn’t like their son was going to be short like 5’5” and they instead wanted him to be taller; he wasn’t growing on the normal curve during puberty and was much shorter than average. He wasn’t growing like he normally should be and was much shorter than peers and would have topped out at like 5’ as an adult. There were some medical reasons behind the ask for shots. Our friend’s son was old enough to understand/ask/want the shots, and he definitely wanted them. Would you *have* to start them in 10 months? I haven’t done any research on the injections myself but our friend is a doctor and he was totally comfortable with the shots, FWIW. I don’t know what I would do as a parent though.
pomelo / 5093 posts
Offering people below the 5th percentile in height growth hormone injections is a thing now. I'm at the 3rd percentile as an adult, and I don't mind it. I know that the stigma for short men is more serious, though, so I guess I'd consider it if I had a very short son. I think that one of my daughters will be very short like I am, but I'm not worried.
This is all within the 'normal' range, though. In a case of dwarfism, the calculations seem really different. Being able to drive a standard car sounds like a really great goal for height. Have you learned anything more about the process of growth hormone supplementation? Are there any negatives?
kiwi / 578 posts
@anonysquire: yes, they had leg surgeries not for height but to correct some bowing that could have interfered with normal mobility.
I have no idea when you should start injections if you choose to, but I don't think that will make your DS feel like you don't love him as is! The reality of the world is that driving and housing and many other things in life will be easier if he can be closer to 5 feet tall than 4 feet tall. I'm sure he will understand your desire to provide him with any advantage you can. Is there a possibility of a good outcome if you start when he is old enough to offer an opinion?
wonderful clementine / 24134 posts
Agree with others about the shots! The two I know were old enough to understand and they wanted them. The kids were just often getting picked on etc so they were more than willing. They did lots of testing and nutritional changes to try to get them back on the curve but in the end they all agreed this was worth it.
hostess / papaya / 10540 posts
@sarac: How do you figure out your percentile as an adult. I know if I had the option to add a few more inches to my height I would love it.
blogger / pomegranate / 3044 posts
I haven't heard of this particular condition, but if you ever want to talk to another special needs mom just wall me!
cherry / 248 posts
The family that moved in next door to my parents have a daughter with russell silver syndrome. I don't know much about it but I have met the little girl. I only know she has it since her father told me in passing as to why she's a bit small for her age. She actually didn't appear that small to me and I wouldn't have know anything was different. He mentioned her failure to thrive and feeding difficulties.
cantaloupe / 6923 posts
Just wanted to come back and update after our geneticist appt for my son. They will be doing some more testing (shocker haha) but have still narrowed his form of dwarfism down to Russell silvers. We are happy with the diagnosis That sounds wrong, jut happy to know the prognosis and to give it a name. But they were also concerned because his growth plates and pubic bone are cartilage instead of turned to bone. Basically none of his bones have ossified since birth. And they think he might have rickets. He is an incredibly low vitamin d level despite being on drops and a formula supplement.
We have lots of fun appts coming up with speech therapists for his feeding issues and to evaluate the need for a feeding tube, and OT and PT to help him with basic age milestones. Anyways, he's cute as heck if I say so sitting up and smiling. He's almost 4 months old and 6.5 pounds of adorableness.
grapefruit / 4089 posts
@anonysquire: he is SO cute! And he is very lucky to have you as his mama! Thanks for keeping us updated.
coconut / 8079 posts
@anonysquire: he just the cutest! Can't believe he's sitting up already. I hope everything goes smoothly with your upcoming appointments.
grapefruit / 4455 posts
@anonysquire: so happy to hear you're all doing well! He's so cute and I love their matching outfits!
cantaloupe / 6923 posts
Thank you ladies!! I should have said likes sitting up haha. He isn't sitting up unassisted. It takes a lot of propping
wonderful pear / 26210 posts
@anonysquire: I think that makes perfect sense, once you know what you're dealing with, no matter the capacity, it's as if you have a renewed sense of purpose.
He's adorable, and you're an amazing mom.
blogger / pomegranate / 3044 posts
Super adorable!
Lmk if you have any feeding tube questions.
pomelo / 5621 posts
He is super cute! Love the kids matching outfits.
Thanks for the update, it must be good to know what your next steps are with a diagnosis.
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