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Bone Age

11/23/2014

Belle

At the urging of our pediatrician we took Sabine to a Pediatric Endocrinologist at the end of October to consult on her stalling growth and small size. I really expected this to yield nothing more than a copay and insurance battle. I really expected to walk away able to tell everyone that my small kid is just fine. That did not happen.

The doctor was super sweet and down-to-earth. She looked Sabine over and then looked over her growth history. She took our familial histories and our histories. She noted my autoimmune problems. After an hour together she explained that yes, Sabine’s growth is slowing much more than normal. She agreed that she is small for her age but, and this is a big but, she is proportional. Sabine is not skinny. Her limbs are in proportion to the rest of her body. She is alert, curious and hitting milestones, although her milestones tend to hit at the later end of the spectrum.

Based on this, our histories and the fact that both the Professor and I are taller than average she recommended a series of basic blood tests. These looked at general organ function, thyroid, blood panels, and a few base autoimmune screens, including celiacs. She also recommended a bone age x-ray to make sure her bones were the appropriate age.

It took four weeks to get all this done and then wait for results. The doctor called this week and explained that all the preliminary blood work and autoimmune tests were normal, thankfully. The bone age, however, is not normal. Sabine’s bones are that of a 6 month old. She is 16, almost 17 months. This, the doctor said, is almost certainly why she is not walking. It also means that she is not growing bone at the proper rate, which is something that needs to be investigated further. The doctor then spent two days consulting with a team of specialists to get multiple opinions on how we proceed.

She called back on Friday and said all doctors agreed we need to move fast and that we should start with the least invasive tests first. We’ll be doing more blood work looking at her calcium, folate, vitamin D and vitamin B levels along with doing a genetic karyotype. The doctor assured me this is nothing we have done. This is not that my milk is not wholesome enough (Sabine was thriving the first four months of her life, then things started to taper off.) This has nothing to do with the fact that we don’t feed her junk food or highly processed “baby snacks.” This has nothing to do with her being a picky eater (she eats a wholesome diet of extremely bland and boring food). This is something that Sabine was born with and we will get to the bottom of it.

I am finding that much like infertility, the bulk of the world just sucks at supporting you when your child might be sick. They are either harsh and criticize the mother, calling her parenting choices into question, or they blow it off saying that the child “will be just fine.” I’ve had a really hard time finding the kind of support I need – a shoulder to cry on and an ear to listen. I need someone to listen when I need to vent about how scary this is. I don’t need an unqualified person to recommend random cures.

So here I am, back in my cozy little bubble of IFers who understand heart break and struggle more than most. I’ve made it to the other side and look at that, there are still more two week waits. There is still more stressful news to come over the telephone. There are still more doctors and needles and invasive tests but this time I am not the one who bears the brunt of it. Now it is my sweet miracle baby. It seems so maddeningly unfair.

(There are a handful of people reading this who know me in real life (thank you LG, MC, FP, KB and NF for being so supportive!) The Professor and I have decided that we are no longer telling people about Sabine’s medical issues as too often we walk away hurt or more stressed. If you want to offer that shoulder and a sincere and open ear please let me know and I will come to you when I need support. Otherwise, we are going about our days and enjoying this tiny and adorable kid. My new response when strangers remark on how small Sabine is is to simply say “good things come in small packages” and leave it at that. Finally, I might come here to talk about how I am feeling about everything. Scrambled Eggs has been my safe space for a long time. Sometimes these posts will be password protected. If you see a password protected post pop up and are one of my regular, long time readers (you know who you are!) please email and I’ll share the password.)

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53 Comments

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  1. Becky #
    November 23, 2014

    I’m so sorry that you received unexpected test results and that you now have to see your amazing little girl deal with doctors and medical tests. It’s just not fair. Hoping you start to get to the bottom of what’s going on soon.

  2. November 23, 2014

    Belle I am so sorry that they is the news that came back! I have met some really great people living through difficult medical situations with their children (some micropreemies, some not). But they know how to provide support. If you would like any further info, just let me know! Like you said, you’ll get to the bottom of this and figure out the best course of action for Sabine. Hugs.

  3. November 23, 2014

    Oh I’m so sorry Belle. I’ve been lurking here on your blog for over a year now throughout my year-long ivf tries and re-tries. Despite the fact that I so very rarely post, I think of you, the Professor and little Sabine very often — funny how blogs bring people so close, even if the author doesn’t know they exist…

    Sometimes learning that something is actually wrong can be a relief, as opposed to the constant noncommittal comments of “oh, she’s just fine”, but this news does indeed sound terrifying, and your reaction of withdrawing back into a safe and supportive space makes so much sense. I’m glad you like her Doctor, as that can make a huge difference in these scary times, and I hope you continue to be impressed by the whole team of investigators who will work to figure out what is going on with your little Sabine. What she lacks in size she sure seems to more than make up for with adorableness and personality. I hope you and the Professor both feel the love that all of us blogging buddies (lurkers and otherwise) are sending you. Good luck.

  4. November 23, 2014

    So sorry you are going through this. You have every right to be worried. I hope you find answers and solutions for beautiful little Sabine.

  5. November 23, 2014

    I’m so sorry that you and your family are having to go through this struggle. I’ll be thinking of you and your sweet Sabine.

  6. November 23, 2014

    Oh My!! As a mom I can totally understand the fear and worry you are having right now. I will not say the usual as you mentioned because clearly something is not right , but I will pray for Sabine and wish from the bottom of my heart that things are only positive for her and she recovers from all of this with a smile on her face and brings joy to you and the professor everyday.

  7. November 23, 2014

    When my son was 15 years old his bone age was 1year and 10 months behind his actual age. He was 5ft 2ins at 15 and all his peers were very much taller. He was late hitting puberty and looked very young for his age. It caused him much anxiety between the ages of 14 and 16, and me too, however I am happy to say (and I hope this helps) he is now 19 and 6ft Iins and fully fit and all fine although still very slim. I know this is not the same as your situation but mother nature eventually got him to where he needed to be and we were able to avoid any medical intervention although he was watched closely for a while. I wish Sabine has the same outcome.

  8. Melanie Meyer #
    November 23, 2014

    I think you will find in the group of ivfers the best support.
    I know that everyday, I look at my frozen embryo baby and think how can he be perfect and try not to overlook at things he might not be doing for his age.
    I think only the strongest people are given the biggest challenges in life. You are strong and little Sabine is too. You will go through this with our support always.
    You are her mother to help her go through any challenges she might have in her life, and you are the best thing on earth for her. You have fought for her and lately you fought again to get some answers. Now will be beside her to love and support her and we will be here to support you. We all know how you did everything right!
    Love from mom to a mom

  9. November 23, 2014

    oh man. here’s hoping the least invasive testing will bring some answers, and soon. I’m so sorry you guys are having to go through this. (((HUGS)))

  10. November 23, 2014

    I’m sorry hon. I hope the next round of tests come back with a diagnosis that’s a simple fix or explanation, and you’re sweet baby girl doesn’t have to get continually prodded.

  11. November 23, 2014

    I am so sorry to hear this mama, I can only imagine all the stress, confusion, and heart wrenching concern you much be dealing with. You’re such an amazing mama, we all know it. You guys will get to the bottom of it! We’re here to listen. Xoxo

  12. November 23, 2014

    Wow. There is only so much in having an “answer,” which leads to more questions. While my personal experience with this is none, I have watched and listened to my friend struggle with her daughter’s neuroblastoma diagnosis and what the future will hold for her. With my medical education, I gave her an ear that understood that it wasn’t all going to be”just fine” – I hope this diagnosis leads to further (correctible) answers. Either way Sabine is beautiful and smart and just perfect as she is.

  13. November 23, 2014

    Oh man how scary and frustrating! I love what you tell people “good things come in small packages!” I had a friend who struggled with something similar with her bebe and she would say, “there are worse things in life than being a petite female!” That always shut them right up. Sending you patience and strength so that you may persevere while they work to get to the bottom of things!

  14. sangela71 #
    November 23, 2014

    Belle, I’m so sorry you’ve gotten scary news about your precious and adorable little girl. I would think it would self-evident to anyone with sense that whatever is wrong cannot possible be attributed to your parenting choices, and I’m sorry that you haven’t found supportive people in real life. That makes the situation and waiting even harder, I’m sure.

    I guess the one bit of good news is that you are on top of things and appropriate testing is now underway. I’ll be sending lots of positive vibes that whatever the problem is, it’s something that can be treated/corrected.

  15. robin #
    November 23, 2014

    This is scary news but hopefully the first round of tests will reveal something so that you have a course of action instead of this waiting game! I am sorry you got news like this, but I do hope now you can stop blaming or questioning yourself and your actions for her size and development. I’m pretty sure my brother was also behind on his growing, I remember him having a series of tests when he was 2, he is still a small guy (5’5″ and very slim) but our family is not known for his height, so we’re not sure if he would have been much taller anyway. I think people feel the need to say “she will be fine” because most of the time that is the truth, most kids without intervention stay on the curve, but you know in your heart that more intervention is needed and I am glad you did not let your feelings get brushed aside. You are a great mom and advocate for Sabine, you will make sure what needs to get done will get done. HUGS to you and your bean!

  16. jesicabrennan #
    November 23, 2014

    Oh Belle, I’ve been meaning to ask you how all the testing went, I’m sorry to hear it didn’t go as you hoped. I am SO GLAD that you took your ped’s recommendation and did the further testing, I was definitely of the mindset that it wasn’t a big deal that she was small but I was so clearly wrong! I hope the solution for this is something relatively easy and this is not a lifelong ordeal for little miss Sabine. Good luck Mama! Be strong for your baby girl!

  17. November 23, 2014

    Well shit! I was hoping it would be something easy to diagnose and manage. I am hoping and praying that once its diagnosed, it is easier to manage.

    My sisters 10 year old daughter is still small for her age and the docs say she’ll never hit 5 feet (she had undiagnosed severe celiac for too long), and it’s very stressful for my sister. People always ask, “is she sick?”. Gah! You best not be too big, or too small by societys standards or there’s something “wrong” with you. I love your response that you have prepared! My sister says, “though she may be small, she is mighty!” when people comment.

    Hugs.

  18. November 23, 2014

    Belle, I’m so sorry your sweet Sabine has to endure all this testing. I hope the doctors will be able to provide a swift, definitive answer to this problem and that there is a non-invasive solution. Abiding with you and your family.

  19. November 23, 2014

    Thinking of you. And please use this space to vent!!!!!

  20. nam #
    November 23, 2014

    Hi Belle, I am a long time silent reader of your blog my son is the same age as Sabine. I am so sorry to hear the news will keep you all in my prayers…
    nam

  21. Stacey #
    November 23, 2014

    That is so stressful!!! But good for you, mama, knowing to take your child in and getting her to knowledgable doctors that can help. She is lucky to have such a caring family. Poop to anyone who isn’t supportive. You are a role model mama.

  22. November 23, 2014

    Belle, I am so sorry that you have received bad news. I can only imagine how stressful it must be to get any kind of bad health news about your baby. I have never heard of bone age differing from actual age. Is it something they think they can fix if they get to the root of what’s causing it? I hope you get some helpful answers soon.

  23. Amy #
    November 23, 2014

    This sounds so scary! I’m sorry for you all. I think so many people look to parenting choices because it makes them think it couldn’t happen to them because they do things *right*. I also think we try to justify why bad things happen to people. But, both of those responses are insensitive. I agree with another comment that people say * it will be fine* because it so often is. Please remember that children are very resilient. They can overcome so much to find joy & a happy life. I’m praying for you & please keep us updated every step of the way.

  24. November 23, 2014

    Oh my goodness I am so sorry. How stressful. Hearing bad news about your child and seeing them go through tests is so frightening. I can relate to the new 2ww especially when Jeremiah and Avani were in the NICU and we were waiting for test results to be interpreted. You are such a strong woman and Sabine is lucky to have you as her mom.

  25. Mo #
    November 23, 2014

    Fuck. I am so incredibly sorry that you’re going through this. I will just say two things that I know for a fact: 1) you are an amazing mother 2) You have an amazing baby girl who is an absolute joy to be around.
    I am hoping against all hope that you get only good news from here on in, but whatever happens – you are strong, you will get through it.
    Always here if you need a shoulder.
    Lots and lots and lots of love.

  26. El #
    November 23, 2014

    So sorry to hear this, this must be incredibly scary. I hope you get some answers pretty soon. My son, who is a few weeks older than Sabine, had minor surgery a couple of weeks ago. Unfortunately not everything went as planned so recovery is also not going as it should. As a mom this stresses me out big time and I so wish I could change things for my little fellow. Everything somebody says everything will be fine, I wanna bite their head off. I know it will but if your little one is in pain, you can’t think clear. So I can imagine not knowing what is going on, is heartbreaking. Know we are thinking of you and Sabine, even on the other side of the ocean. A very big hug! Btw, I think you are a wonderful mom!

  27. Jaclyn #
    November 23, 2014

    I’m so sorry you got this news. I’m really glad you are in ny, where you are close to a lot of specialists who will hopefully soon be able to come up with a plan that can help your wonderful girl.

  28. November 23, 2014

    I’m so sorry for the medical mystery lurch you’ve been left in. This was approximately how I felt as Ike’s bizarro liver enzymes stayed out of whack for waaaay beyond the standard jaundice deal (like 1.5 years – when I couldn’t get the pediatrician’s and hepatologist’s offices to communicate prior to his two-year checkup, I gave up). I still think it was some kind of blood type/whatever incompatibility that made my breastmilk less than ideal for him, but nobody seemed as interested in investigating it as they were monitoring it, via those awful, awful blood draws. I hope you don’t have to have any more before you get something figured out! XOXOXOX…

  29. November 23, 2014

    this is heartbreaking news and terribly unfair that you are going through this pain of the unknown again. Sending you much love and support and hope that you will find an answer that will resolve this issue. Always use this as your safe space and never feel you should censor how you are feeling.

  30. November 23, 2014

    I echo much of what has already been said, so I’m not going to repeat many of those sentiments. I did want to commend you once again for following your instincts and taking her to a new ped for a second opinion. (I think your original ped was of the opinion that everything was fine).

    I also want to remind you to practice good self care during this stressful time. It’s impossible to not be worried and anxious right now, and it’s easy to focus 100% on Sabine and give the little you have left after that to the Prof/household. Please remember to take care of YOU, mama!

  31. November 23, 2014

    Very sorry to hear this news. I will echo what others have already said about you being an amazing parent. Keep doing what is best for you and Sabine and I’ll be thinking of you all as the next round of test results come in.

  32. November 23, 2014

    I’m so sorry to hear that. Hoping you will get to the bottom of this with as few invasive tests to your precious little girl as possible. Hugs.

  33. November 23, 2014

    I’m so very very sorry for this! I hope you get to the bottom of it quickly and that you get the best results possible. I’m also sorry that people have reacted so horrendously towards you in regards to her being sick. We experience the same thing. It’s not just random people that hurt you either, sometimes it’s medical professionals. One of the first physical therapists we took Paige too, basically blamed me saying “people just don’t know how important tummy time is” and implying that if we had just done more tummy time, Paige would be doing everything she should be…meanwhile…genetic disorder. I know you don’t know me IRL, but I’m serious in that if you ever need to vent to someone, someone to cry with, someone to rage at the world with, I’m here. Having a sick kid sucks. You’ll both get through it and make the best of it somehow.

  34. November 23, 2014

    I’m sorry you are having to deal with this… It’s so not fair! You finally get your miracle and then this? Totally sucks! I hope you keep us updated… I’ve been following you for so long that I feel like I know you! You have an adorable little girl there and I’m going to send you a ton of positive thoughts to get through it with a good ending! Hugs.

  35. Jos #
    November 23, 2014

    Oh Belle, I just don’t understand how anyone (IRL or online) could react to this news with parental judgement or criticism. That is just not right.

    I’m so sorry you’re going through this scary time of diagnoses and worry. Praying that there is an easy path to follow that will help her to grow strong and healthy more quickly than not.

  36. November 23, 2014

    I’m sorry you are going through this. I wish you had the support you need even if all you need is an ear to listen. I hate it when people try to make things better by saying stuff that they can’t guarantee like “Everything will be ok.” We will be here to listen to you though when you need to vent. I hope all the results come back soon and that you are able to find an easy solution.

  37. November 23, 2014

    I am sorry you are dealing with this, but I am also so glad that you are getting answers and that your doctor seems to be working diligently and quickly to come up with a game plan. This community is definitely here for you and I will be praying for you and Sabine.

  38. Romy #
    November 23, 2014

    I’m so sorry you’re dealing with stressful tests and a scary diagnosis. I really hope that the least invasive tests will give you all the answers you need and that the course of action/treatment will be as easy and quick as possible. I’ll keep you and Sabine in my thoughts.

  39. November 23, 2014

    I’m so sorry for what you’re going through and that you feel lost and alone and without support. I hope you find the kindness and thoughtfulness that you seek here at Scrambled Eggs. We have had to face a few health issues with Skittle and it’s scary and daunting and no one really seems to get the gravity of it, or how hard it is. I’m here, friend, and I’m thinking of you and Sabine and wishing you the answers and guidance that you need. xo

  40. mylifeisaboutthejourney #
    November 24, 2014

    Sorry Belle. Being a mommy is so tough. Thinking of Sabine and your family.

  41. Saskia #
    November 24, 2014

    So sorry to hear this. For what it’s worth (probably not much) my kid had a similar diagnosis and is now a healthy, happy, average-sized college student.

  42. nonsequiturchica #
    November 24, 2014

    I hope you get some answers soon! I will be sending all kinds of positive thoughts your family’s way.

  43. November 24, 2014

    Belle, I’m so sorry to hear this. It’s so nerve wracking, and doesn’t seem fair. Although there are still more pieces of the puzzle to put in place, you are doing all of the right steps to get an accurate diagnosis, and early intervention is so important. If you’d ever like support, I am colleagues with someone whose daughter was also very tiny as a baby, and I’m sure he’d be happy to listen to you or answer any questions. He’s a lovely guy. His daughter is 9 years old now (and still small for her age, but totally healthy!), and he knows how nerve wracking those early days are when you’re just getting a diagnosis, but he wanted me to reassure you that he understands what you’re going through.

  44. November 24, 2014

    Belle, I am so sorry your family is going through this stress and heartache. I hope this blog remains a place where you can vent and get support and encouragement. As a long time reader and IF commiserator, I’ll be checking in regularly to see how sweet, silly Sabine is doing. As the mom of a first percentile kid, I’ll be keeping an extra close eye on things. Here for you, out in the ether…

  45. Lisa @ hapahopes #
    November 24, 2014

    Oh Belle, that blows! Blows, blows, blows! I’m so sorry you are facing more scary crap. I’m so glad you listened to your gut. You know why you a) had a gut to listen to and b) actually listened to it? Because you are an awesome mom, that’s why. I hope you find an answer because the bone thing sounds no bueno. It sounds like you are in great hands.

    As someone under five feet tall, I will tell you that the “good things come in small packages” thing gets old after awhile (then again, I’ve been hearing it for 36 years, so…). When someone tells me that, I usually reply with, “Yes. Dynamite being one of those things.” Feel free to use that. Sabine surely fits the bill 😉

    Thinking of you!

  46. donna4211 #
    November 25, 2014

    I’m so sorry to hear this news about Sabine. My daughter had some health problems when she was a newborn and we had to wait 9 months to get the final tests and diagnosis done. The waiting is so frustrating! I’m hoping you get good news soon and that you end up with a good plan of action for sweet Sabine. I’m so sorry you haven’t been getting the support you need from people around you. That just makes the stress and fear that much worse. I know this is a scary time but it sounds like you have some really great doctors working for her and hopefully they will come up with an answer soon. Praying that you get a treatable diagnosis soon and that you get the support you need.

  47. Infertility Can Suck It #
    November 25, 2014

    Thinking of y all and your sweet little girl. We have had a few sets of friends go through “rare gene” diagnosis with their little ones and have seen the stress and worry. Sabine is so lucky to have a mom and dad who love her and who are taking such amazing care of her. Really really hoping there is a quick and easy resolution for you all. Big hugs!

  48. November 26, 2014

    I am so, so sorry to read this update. I’ll be thinking of you all and hoping for answers and steps for moving forward. I know support via the Internet isn’t the same as in person, but we are all here whenever you need/want to share and will always be rooting for you and Sabine.

  49. Trish #
    November 26, 2014

    Hi Belle,
    Like all the other posts I am so sorry to read about Sabine having to endure all the testing and you having to go through the stress. You are an absolutely wonderful Mother and don’t you ever doubt yourself even for a moment. You worked so hard to get your perfect Sabine. I have been following your blog forever it seems and I wish you, Sabine and the Professor nothing but the best. Sending positive thoughts and prayers for your family. I know you have a ton of support but I am available via email if you ever need to chat. I am sorry for any assholes that haven’t supported you. Screw them!!
    Take care!

  50. Michelle #
    November 26, 2014

    I’m a long time lurker- I also went through IVF and our girls were born less than 2 weeks apart! Just wanted to say I’m sorry to hear of Sabine’s health concerns and I hope you get answers soon.

  51. Karaleen #
    November 30, 2014

    Oh Belle, I’m sorry the test results were not as you hoped. I am happy that it seems you have found a team of doctors who are both compassionate and proactive. Sabine is a beautiful and perfectly made child. And you are right…..good things do come in small packages. I have been following your blog since well before your pregnancy with Sabine. It is evident from your posts and your passion that you and the professor are amazing parents who only do what is best for your child. Don’t listen to the nay-Sayers….even if they happen to be in the medical profession. Follow your gut. I have been in your shoes with our youngest and it is really hard to weigh your gut against the doctors. We got lucky like you and found a great team who partnered with us instead of just giving orders. We are on the other side now with a healthy child and I will be praying the same for you all. Would love to stay updated on Sabones progress and send tons of support and good wishes your way.
    From one mama to another….huge cyber hugs!
    Karaleen

  52. jak #
    December 3, 2014

    i am totally late on this but please have sabine checked for turner syndrome. i think that it is important to cross off your list asap. best wishes mama and bean!!!

  53. December 9, 2014

    I’m so, so sorry to hear this. Sending love and comfort to you and your sweet baby.

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