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Cincinnati Babies
KYmama9286
member
It all makes sense now...
KYmama9286
member
So I need to get this out and I'm not ready/wanting to talk to family or IRL friends about this just yet so I will unload to you guys
I just had Nicholas' 4month well visit and it was hard to say the least. Our pedi isnt very happy with Nicholas' weight gain so far (a big concern for me as you can see based on my post from a few days ago) and based on some of Nicholas' physical characteristics the Pedi really thinks Nicholas has Russell Silver Syndrome which is a genetic condition that has a variety of different issues. So he tells us he wants us to go meet with genetics at Childrens and also Gastro at children's to see if there are any other underlying issues about why Nicholas isnt gaining well... Nicholas also has a flat spot that has continued to get worse and worse and there is a good chance that he will need a helmet also so we are also going to be consulting with plastics down at Childrens' and to top off my "awesome" (please note the sarcasm) visit he has to get his 4month shots too
Im just sitting there trying to hold back tears as I get a list of all the medical things going on--the sh*t I've been suspecting is hitting the proverbial fan at this point...So I'm not crying about things then Nicholas is sobbing from his shots and I basically just leave the pedi's office as quickly as I can...and of course when I get home I google Russell Silver Syndrome (RSS) and look at pictures and read about other characteristics and my heart sinks because it is like looking at pictures of Nicholas--there are pictures that I have of Nicky that are identical to some of the kids w/ RSS...I'm basically just overwhelmed and my thoughts are going to the worst possible place--in a sense if he does have RSS than alot of my nagging questions will be answered, we will know what caused the IUGR and we will know how to move forward but its still really hard to know that there is a good chance that Nicholas will need extra help
I dont really know or expect any sort of reaction to this but I needed to get it out and I dont feel like rehashing it to family/friends (except you guys 
) this next month is going to be alot of dr's appointments, worry, etc. ugh! I thought I was in the clear for a little (at least in regards to medical issues)
This discussion has been closed.
Re: It all makes sense now...
Oh sweetie, I am so sorry. You must have so many thought srunning through your head. I hope you get all the answers you need, rememember knowledge is power. We are all here if you need us.
On another note, Jack had Plagiocephaly and wore a helmet when he was 6 months old. It worked wonderfully and was so worth it. Feel free to ask any questions you have.
Best wishes to you!
OK, because I am a silver lining kind of girl and sometimes have an uncontrollable desire to help, I found this for you....
What Treatments are Available for Russell-Silver syndrome?
For RSS and non-RSS/SGA patients, the prospect for a normal life with a normal adult height is closer than ever before. By understanding the importance of aggressively feeding these children, no matter what it takes, we are able to avoid the malnutrition and low blood sugar that in the past has so negatively affected their growth and development. With the recent U. S. Food and Drug Administration's approval of growth hormone for the treatment of the growth failure associated with being born small-for-gestational age, these young children can start the first grade with a normal height if treated early. By taking medications to postpone puberty, called LHRH analogues [LHRHa], the older children can recover growth potential lost in-utero, in infancy and in early childhood. By continuing growth hormone until growth is finished, the teenagers have a better growth spurt during puberty. The figures comparing the average growth of a large sample of untreated, European RSS children to examples of currently treated Russell-Silver Syndrome children are available from MAGIC.
The RSS Division of MAGIC has information on current therapy and ongoing research involving Russell-Silver syndrome and Small for Gestational Age children. Please contact us if you have questions about treatment options for your child, difficulty arranging medical care for your child, or if you are interested in learning more about ongoing research in the field.
:::hugs::: (lots of em!)
What a rough visit... I couldn't imagine! Try to stay strong but don't be afraid to cry a little...it's a good stress reliever and it doesn't make you a weak person. Thank goodness that Cincinnati has such a fantastic childrens hospital and they will be able to take care of Nicolas and answer some much needed questions. Always remember you have our shoulders to lean on, esp in the upcoming month with the many visits.
Oh goodness - that is a lot of information to take in and try to digest. I'm certain that it feels very overwhelming, right now. I hope that you receive the information and support that you need from the specialists at Children's. Your little miracle is perfect just the way he is; and, more importantly, he has the Mommy he needs to help him through any/all of life's hurdles.
We're always here to offer an *ear*, encouragement, and support.
(((HUGS)))
I'm so sorry you had a rough (to say the least) appointment.
I hope you get some better news at some of your upcoming appointments and will keep you all in my prayers! You have a beautiful, precious boy!
::Hugs::
Vent away, you've got a lot on your plate right now. I'm sorry you have to deal with all of this.
Jennie
Hugs!! What a stressfull visit. Thankfully Cincinnati Childrens is awesome and hopefully they will be able to properly diagnose him and give him the best treatments available so he will live a full and healthy life.
More hugs!
Baby Blue Eyes
I'm sorry you got such overwhelming news today. It just adds insult to injury that Nicholas got shots today, it's just so darn hard to get news about your child that isn't happy and rosy.
We are definitely always here for you, I hope that's some comfort to you. Sending you lots and lots of hugs.
Tyler Anthony arrived on 9.21.09
The Chronicles of Justin and Tyler
Mom to Lily Gayle 4.25.06 Charlotte Kathleen 3.27.09 Samuel Thomas ~8.4.12~
Well, I know nothing about RSS but Sprads post "looks" like it is managable. I do say "looks" because I am sure it is not that simple. I do hope that you are able to get answers quickly and you DS is on his way to being a healthy fat boy:) Try not to look too much on the internet you know that will just cause you to worry more! I swear search engines only put the worse case stories on the top.
What an overwhelming visit Lauren, I'm so sorry! I hope that the specialists at Children's will be able to answer some questions, and provide you guys with a game plan on what to do next to help Nicholas.
I know that I'm sending some positive thoughts your way, and it sounds like you've got a lot of people doing the same. We're all definitely here for you when you need some support!
Elijah Matthew - 5/3/07 ~ Adalyn Rosemary - 3/23/11
*Photos by Kacy Cierley*
Photos courtesy of Jen Rose Photography
I am so sorry to hear this... we've never been through anything like what you're going through but I can certainly relate to caring for a child with a chronic illness/condition
I really hope that all of the testing will give you the answers you need to move forward and keep your little man happy and healthy and growing!
Hannah
Photo by Melissa Nicole Photography
Big hugs! I just read this post and your post about your roof. You are having a truly bad day.
I'll be thinking of you and saying a prayer for your little boy. We're here to listen so please keep us posted on what the Dr.'s say.