https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Thu, 07 May 2026 14:29:51 +0000 https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2741471 Mon, 29 May 2017 22:22:52 +0000 ALV91711 2741471@https://boards.hellobee.com/ <p>He is super cute! Love the kids matching outfits. </p> <p>Thanks for the update, it must be good to know what your next steps are with a diagnosis. </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2741336 Mon, 29 May 2017 10:08:40 +0000 Mrs. Tiger 2741336@https://boards.hellobee.com/ <p>Super adorable! </p> <p>Lmk if you have any feeding tube questions. </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2741305 Mon, 29 May 2017 08:10:34 +0000 looch 2741305@https://boards.hellobee.com/ <p>@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.</p> <p>He's adorable, and you're an amazing mom. </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2741304 Mon, 29 May 2017 08:10:31 +0000 bhbee 2741304@https://boards.hellobee.com/ <p>So cute! And that shark hoodie too! </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2741302 Mon, 29 May 2017 08:02:33 +0000 arosebyany 2741302@https://boards.hellobee.com/ <p>I cannot get over how cute he is! :heart: </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2741278 Mon, 29 May 2017 00:01:38 +0000 oskarsmommy 2741278@https://boards.hellobee.com/ <p>He is soooo cute!!! </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2741276 Sun, 28 May 2017 23:23:16 +0000 anonysquire 2741276@https://boards.hellobee.com/ <p>Thank you ladies!! I should have said likes sitting up haha. He isn't sitting up unassisted. It takes a lot of propping :) </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2741264 Sun, 28 May 2017 21:37:27 +0000 2littlepumpkins 2741264@https://boards.hellobee.com/ <p>@anonysquire: so happy to hear you're all doing well! He's so cute and I love their matching outfits! </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2741262 Sun, 28 May 2017 21:30:10 +0000 jhd 2741262@https://boards.hellobee.com/ <p>@anonysquire: he just the cutest! Can't believe he's sitting up already. I hope everything goes smoothly with your upcoming appointments. :heart: </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2741261 Sun, 28 May 2017 21:27:43 +0000 Synchronicity 2741261@https://boards.hellobee.com/ <p>@anonysquire: he is SO cute! And he is very lucky to have you as his mama! Thanks for keeping us updated. </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2741260 Sun, 28 May 2017 21:25:07 +0000 MrsBrewer 2741260@https://boards.hellobee.com/ <p>@anonysquire: :heart: he is just adorable! </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2741256 Sun, 28 May 2017 20:34:58 +0000 anonysquire 2741256@https://boards.hellobee.com/ <p>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. </p> <p>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. </p> [attach=1857/17/oqoxqb.450x600.image.jpeg] [attach=1857/17/oqoxqc.450x600.image.jpeg] https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2721187 Thu, 06 Apr 2017 20:48:23 +0000 oliviaoblivia 2721187@https://boards.hellobee.com/ <p>What a cutie! </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2721182 Thu, 06 Apr 2017 20:47:02 +0000 threeplusme 2721182@https://boards.hellobee.com/ <p>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. </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720775 Thu, 06 Apr 2017 11:38:54 +0000 sarac 2720775@https://boards.hellobee.com/ <p>@Boogs: I used this calculator</p> <p><a href="https://tall.life/height-percentile-calculator-age-country/" rel="nofollow">https://tall.life/height-percentile-calculator-age-country/</a> </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720619 Thu, 06 Apr 2017 07:15:58 +0000 Mrs. Tiger 2720619@https://boards.hellobee.com/ <p>I haven't heard of this particular condition, but if you ever want to talk to another special needs mom just wall me! 😊 ps he's sooo adorable! </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720510 Wed, 05 Apr 2017 18:44:10 +0000 Boogs 2720510@https://boards.hellobee.com/ <p>@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. </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720458 Wed, 05 Apr 2017 14:50:51 +0000 T.H.O.U. 2720458@https://boards.hellobee.com/ <p>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. </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720455 Wed, 05 Apr 2017 14:47:26 +0000 azjax 2720455@https://boards.hellobee.com/ <p>@anonysquire: yes, they had leg surgeries not for height but to correct some bowing that could have interfered with normal mobility.</p> <p>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? </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720439 Wed, 05 Apr 2017 13:47:23 +0000 travellingbee 2720439@https://boards.hellobee.com/ <p>He is so stinking cute! </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720436 Wed, 05 Apr 2017 13:43:23 +0000 sarac 2720436@https://boards.hellobee.com/ <p>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.</p> <p>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? </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720410 Wed, 05 Apr 2017 12:48:13 +0000 yoursilverlining 2720410@https://boards.hellobee.com/ <p>@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. </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720407 Wed, 05 Apr 2017 12:46:23 +0000 anonysquire 2720407@https://boards.hellobee.com/ <p>@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. </p> <p>@avivoca: thank you :) he's such a sweet little thing! </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720392 Wed, 05 Apr 2017 12:00:28 +0000 avivoca 2720392@https://boards.hellobee.com/ <p>I don't have any experience with RS, but gosh Rocky is cute! </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720389 Wed, 05 Apr 2017 11:57:52 +0000 Mrs. Blue 2720389@https://boards.hellobee.com/ <p>@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. </p> <p>I have no advice on making that kind of decision. What do you feel are the pros and cons for him getting the injections? </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720376 Wed, 05 Apr 2017 11:38:02 +0000 anonysquire 2720376@https://boards.hellobee.com/ <p>@azjax: was it leg stretching surgeries? Ouch!!!!</p> <p>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!!! </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720277 Wed, 05 Apr 2017 08:38:15 +0000 azjax 2720277@https://boards.hellobee.com/ <p>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.</p> <p>Your wiggle worm is so cute! </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720249 Wed, 05 Apr 2017 08:18:44 +0000 Mrs. Blue 2720249@https://boards.hellobee.com/ <p>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. </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720247 Wed, 05 Apr 2017 08:17:06 +0000 yoursilverlining 2720247@https://boards.hellobee.com/ <p>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! </p> https://boards.hellobee.com/topic/russell-silvers-syndrome#post-2720245 Wed, 05 Apr 2017 08:14:12 +0000 jhd 2720245@https://boards.hellobee.com/ <p>@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. :heart: </p>