https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Tue, 12 May 2026 14:02:35 +0000 https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome/page/2#post-1081219 Wed, 11 Sep 2013 22:47:22 +0000 MrsMccarthy 1081219@https://boards.hellobee.com/ <p>She is so adorable I can't stand it. What a sweetheart. Love her! Doctors are people too and they can make mistakes. I'm glad you are getting her help where she needs it. That's the est you can do as a parent and watch her grow. </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome/page/2#post-1081144 Wed, 11 Sep 2013 22:01:42 +0000 aMohror 1081144@https://boards.hellobee.com/ <p>@Mrs. Jacks: I will keep that in mind, thank you! They have to refer us and I have no idea where or who the place even is! If I don't hear anything this week I will make sure to call the neurologist back and see what I can do! Thanks again! </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome/page/2#post-1081124 Wed, 11 Sep 2013 21:55:05 +0000 Mrs. Jacks 1081124@https://boards.hellobee.com/ <p>@aMohror: A little tip about genetics. I wouldn't wait on a call from them. I think I'd be proactive and call their scheduler... Otherwise, you could be waiting for a long time!</p> <p>Hang in there! </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome/page/2#post-1081112 Wed, 11 Sep 2013 21:53:03 +0000 aMohror 1081112@https://boards.hellobee.com/ <p>@LovelyPlum: Thank you very much :) I'm hoping all of the frustration will end soon but I guess we will see... :) </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome/page/2#post-1079186 Wed, 11 Sep 2013 11:42:24 +0000 LovelyPlum 1079186@https://boards.hellobee.com/ <p>She's so beautiful! What a crazy journey you've been on so far. I'm glad that you have gotten such good news, but it sounds super frustrating not to have answers. Hoping that your little girl continues to thrive, and that you can get some of the closure that you need. </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1079161 Wed, 11 Sep 2013 11:28:55 +0000 aMohror 1079161@https://boards.hellobee.com/ <p>Wow, I am completely blown away by your responses. Thank you all for your support, words of encouragement and such kind words :) It makes me feel like I am doing something right! I'm just trying to do as much as I can for her. Your posts made me tear up one after another. Thank you so much, I really appreciate you all :)</p> <p>@LuLu Mom: She is VERY tiny haha, She is about 17 lbs right now but I'm not worried about that because she is proportioned and with all of those rolls you would never know haha</p> <p>@Cole: Thank you for the advice about talking to the doctors nurse, I never would have thought of that. </p> <p>@Mrs. Pinata: She hasn't seen a GI at all. Lucky for us her food is no longer an issue!</p> <p>@banana: I remember! I can't believe it either....where does the time go?!</p> <p>@Corduroy: We actually showed the neurologist a picture of myself at the same age Camdyn is. She said she could see similarities in both my husband and I but that she still had a little bit different features. And yes, you would think they would be past that point by now...</p> <p>@Mrs. Jacks: When they mentioned Williams Syndrome she did have many of the symptoms but no heart problems. We did get referred to a Geneticist and we are waiting on a call to make the appointment. I'm very curious to see what happens there.</p> <p>@MrsMcD: It really is amazing how much therapy can help, I would have never know it if we didn't start when we did :)</p> <p>@bunnylove08: Not weird at all, thank you very much :)</p> <p>@looch: I believe you are correct, that seems to be where we are going.</p> <p>@mrs.cookie: It's true, not having answers is hard. </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1078127 Tue, 10 Sep 2013 23:44:03 +0000 birdofafeather 1078127@https://boards.hellobee.com/ <p>She's adorable! Hope you get answers, but it seems like you are in great spirits considering all the run around! You are a great advocate for her and it seems like she's doing great! Keep going mama! </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1078125 Tue, 10 Sep 2013 23:43:19 +0000 Mrs. High Heels 1078125@https://boards.hellobee.com/ <p>She is adorable!! Beautiful big blue eyes, and I love all her rolls! </p> <p>You sound like an amazing mother, and your daughter is obviously thriving under you! Wish you had clearer answers, and hope you get them soon. </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1078114 Tue, 10 Sep 2013 23:29:49 +0000 mrs.cookie 1078114@https://boards.hellobee.com/ <p>Your daughter is so gorgeous!! I don't have anything expert to add but that I understand how you would want an answer. I think that's sometimes the hardest part about being a parent, often there isn't an answer! To the big and small questions. Like previous posters, I really admire what you've dine already to help her be her best self. I think that even if you can't find a definitive answer, if you keep identifying interventions or therapies that can help her, and advocating for her to have that help, that's still pretty darn good. You are doing an amazing job raising a beautiful girl :) </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1078084 Tue, 10 Sep 2013 22:34:38 +0000 stargal 1078084@https://boards.hellobee.com/ <p>your daughter is gorgeous and perfect. absolutely perfect. :heart: :heart: </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1078079 Tue, 10 Sep 2013 22:26:14 +0000 HLK208 1078079@https://boards.hellobee.com/ <p>She is beautiful! I hope you get some answers soon. I'm so sorry that it's been a stressful process of undergoing testing. She is thriving though and that's so very important! </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1078059 Tue, 10 Sep 2013 22:08:10 +0000 MrsF 1078059@https://boards.hellobee.com/ <p>Your daughter is so beautiful and it sounds like she is such a happy little girl. She is lucky to have you as an advocate. I hope you find the support and answers that you need. </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1078058 Tue, 10 Sep 2013 22:07:07 +0000 Pepper 1078058@https://boards.hellobee.com/ <p>She is beautiful!! What a sweetie. I'm sorry you've been dealing with so much regarding her health. It sounds like you are doing a wonderful job being an advocate for her, and being an amazing mama. I hope you get the answers you're looking for. Hugs! </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1078048 Tue, 10 Sep 2013 22:01:55 +0000 immabeetoo 1078048@https://boards.hellobee.com/ <p>@aMohror: she is so beautiful! it sounds like you're doing an amazing job working through diagnosis options and getting her early intervention therapies - she is lucky to have you as a mama :) </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077990 Tue, 10 Sep 2013 21:32:54 +0000 Mrs. Confetti 1077990@https://boards.hellobee.com/ <p>I am so blown away by how incredible of a mom you are! Your daughter is so lucky to have such dedicated parents taking care of her (and she is SO cute!!). Sadly, I have no medical expertise, but I wish you all the best in finding the answers you seek. </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077985 Tue, 10 Sep 2013 21:31:21 +0000 looch 1077985@https://boards.hellobee.com/ <p>I think sometimes, a diagnosis comes via the process of elimination. I think the diagnosis is important for continuation of services, if needed, so I'd keep going until there was nothing else.</p> <p>You are so strong! Keep it up mom! </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077963 Tue, 10 Sep 2013 21:24:16 +0000 bunnylove08 1077963@https://boards.hellobee.com/ <p>She is so adorable!! I want to give her hugs and kisses (sorry if that's weird) I'm sending hugs your way and I'm glad she is doing well and is thriving. You and your dh are doing a wonderful job for your little one. Keep up the good work! </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077799 Tue, 10 Sep 2013 20:03:57 +0000 littlek 1077799@https://boards.hellobee.com/ <p>@aMohror: Hugs.. she is adorable and you sound like a great mommy! </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077794 Tue, 10 Sep 2013 20:01:07 +0000 Raindrop 1077794@https://boards.hellobee.com/ <p>*hugs*</p> <p>No advice just hugs.</p> <p>Sounds like you are doing a great job getting this looked at early. :) </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077684 Tue, 10 Sep 2013 19:03:09 +0000 MamaMoose 1077684@https://boards.hellobee.com/ <p>I have no advice but I think you and your husband are doing an amazing job of taking care of your sweet girl. I just want to bite those gorgeous cheeks! </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077667 Tue, 10 Sep 2013 18:54:46 +0000 chrispygal 1077667@https://boards.hellobee.com/ <p>She is beautiful!! I can add nothing other than to offer your support and encourage you to do the same thing you've been doing - nurturing and encouraging your little girl! xoxo </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077623 Tue, 10 Sep 2013 18:36:06 +0000 Sophia 1077623@https://boards.hellobee.com/ <p>I'm so sorry you've had this stress! I have no words of wisdom, but I just felt the need to chime in and agree with previous posters. Your daughter is beautiful! And it sounds like she won the jackpot - she has awesome parents, too! </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077608 Tue, 10 Sep 2013 18:27:30 +0000 kml636 1077608@https://boards.hellobee.com/ <p>She is absolutely adorable!!! So sorry your family is going through this... hoping for the best for you! </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077604 Tue, 10 Sep 2013 18:27:08 +0000 banana 1077604@https://boards.hellobee.com/ <p>@Mrs. Jacks: Ah...thank you for the explanation. Definitely makes a lot of sense now. </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077593 Tue, 10 Sep 2013 18:23:56 +0000 Mrs. Jacks 1077593@https://boards.hellobee.com/ <p>@banana: great question! I think it's always ideal to know, but you have to balance the cost benefit ratio. So a normal karyotype and FISH has a cost associated with it, the snp microarray ha a higher cost (though coming down in price dramatically, recently... So much so that it will soon be cheaper than the karyotype/fish combo). Whole genome is in the tens of thousands of dollars. So it's prohibitively expensive unless there is a dramatic reason to do it (regression or reversible severity). Plus there is the added problem of interpretation. What do you make of previously undescribed or insignificant mutations? What if they find out something later that was previously deemed insignificant? Are you continuously comparing the genome with new findings as they evolve? What if something is thought to be significant and then is found out not to be? What if you discover that most things are fine, but there is a gene for Huntington's or Alzheimer's? Do you disclose that?</p> <p>The can of worms is so big, that the reasons for going down that road have to be really compelling. </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077557 Tue, 10 Sep 2013 18:14:03 +0000 winniebee 1077557@https://boards.hellobee.com/ <p>Your daughter is beautiful and it seems she is doing great recently!! Your post made me tear up :) </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077553 Tue, 10 Sep 2013 18:12:21 +0000 banana 1077553@https://boards.hellobee.com/ <p>@Mrs. Jacks: I was just wondering...Would it be beneficial for the parents to find out what the underlying issue is, even if the child doesn't currently show any signs of regression? Just so that they can be aware of possible future issues that may come along due to the underlying issue? I'm thinking that even if my child was developing fine, I'd probably still want to know. </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077542 Tue, 10 Sep 2013 18:08:32 +0000 Kimberlybee 1077542@https://boards.hellobee.com/ <p>@aMohror: Your baby is so cute! She is just too precious. Hope you find the answers soon. Keep hanging in there! </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077541 Tue, 10 Sep 2013 18:07:42 +0000 deactivated_account 1077541@https://boards.hellobee.com/ <p>Your little girl is gorgeous and you seem like such an amazing mother. It is amazing that you have started your daughter on occupational and speech therapy at such a young age. Regardless of what diagnosis your daughter ever receives - if a diagnosis is ever even needed for your seemingly perfect baby girl - the therapy will no doubt help her. My sister is a pre-k/k special ed teacher for mild-moderate students and there is such a significant difference between students who have and have not utilized therapies. Keep up the good work. Your little girl is seriously adorable. </p> https://boards.hellobee.com/topic/my-child-looks-like-she-has-syndrome#post-1077508 Tue, 10 Sep 2013 17:50:09 +0000 Mrs. Jacks 1077508@https://boards.hellobee.com/ <p>I can't obviously diagnose anything over the Internet, but the story is certainly suggestive of a unifying diagnosis. Williams was obviously my first thought (the beautiful blue eyes, cute elfin features... But comes usually with some heart problems).</p> <p>I would think they would do a snp microarray, but sometimes even with that, they aren't able to come to a clear diagnosis. At that point, I think the important thing is hat she's getting all the resources she needs to be her best self!</p> <p>I know it's frustrating, but sometimes we have to enjoy he journey. She's beautiful and making great strides, and that' the most important thing.</p> <p>Edited to add that I see you did the snp microarray and it was normal. Great news! The next step would be whole genome sequencing, but I personally wouldn't do that while my baby was thriving. If she was regressing or having severe problems I might consider it, but she's doing so well!</p> <p>Have you met with a geneticist? Often they'll just recognize a constellation of findings, or recommend the test that will reveal the underlying issue. They can also say "hey, she looks great. It's not worth pursuing this any further." </p>