Saethre-Chotzen Mama new to Cranio kids

[cheryl2]

Thank you for sharing Kate!@Cheryl- was it the same for you and Clara and far as the delays go?Did any of you get frustrated or sad about your Child's delays (if they had any)?! It's still pretty hard for me to accept that she will have these delays, even though it's something we've been told to expect. It's just that when I look at her now (as opposed to the first few weeks when we were still trying to soak this all in), I no longer notice that she's 'different'. I just simply see 'my beautiful baby' so I find that I'm constantly having to remind myself that she is different and that these delays are something we will need to expect.

Hi Tracy, Clara does have some minor delays, mostly in motor skills. Like Kate's daughter, Clara had torticollis (a persistent head tilt) due to strabismus. She still has a slight head tilt since she still has eye issues. Clara often was slightly behind or on the late side of normal meeting her developmental milestones.

Now Clara is going to be 9 years old on Saturday (!). She is in third grade and doing well. Her motor skills are still below average. Her handwriting isn't great and she still has trouble with buttons, snaps, etc. But she is a great reader and speller, she has a great sense of humor and she's very charming :).

Of course, none of us have crystal balls. So at times I would really worry about how Clara was doing developmentally. Is Darienne getting early intervention services? Any child from birth to age three can get a developmental evaluation for services. Clara had physical therapy and speech from early intervention.

I think it's good that you first see your beautiful baby. Has she already had cranio surgery? She is very young and you won't know what her delays will be or even if she will have delays. If you haven't already, I would get her evaluated by early intervention for peace of mind. And SCS kids often have eye issues, so I would also recommend that she see a pediatric ophthalmologist. I have heard very good things about CHOP so I'm sure she is in good hands. But mainly, enjoy your new baby :)

[D-Mama's Mama]

Thank you for sharing Cindy! I know she will surprise us out of no where. My family is convinced she will start walking crazy early at like 7 months just to prove us all wrong. (: lol I guess we will see!

[D-Mama's Mama]

Thank you Cheryl! Happy birthday to Clara! These SCS stories give me hope for Darienne. She actually has her early intervention evaluation next Wednesday so we will see of she 'qualifies' for services. She does do something weird with her neck and eyes where she pulls her head all the way back and is looking up with her eyes a lot of the time as if she is looking for something behind her, but nothing is there. Do this behavior sound familiar to anyone?As fat at the cranio, she has not had surgery yet. We meet with Dr Barlett on December 13th and hope to get a date for a CVR and FOA then!!

[rtkate]

What a coincidence Tracey, Gwen has a followup with Dr Bartlett on December 13th too! Good luck to you!!

[D-Mama's Mama]

OMG that's too funny! Small world!! (:

[D-Mama's Mama]

Here is a recent picture of Darienne. An resemblance to other SCS babies? They did show us a picture of another little girl at CHOP with SCS who looked almost identical to D, it was kinda freaky! Just wondering how similar (or different) SCS babies look

[D-Mama's Mama]

Whoa! That's huge! LolI'mSorry!!

[rtkate]

Aw she's sweet! I'm not sure there is a specific "look" to SCS babies. After doing a lot of reading on the subject, what is interesting about SCS is how each person affected can have such varying degrees of the syndrome. And I know not everyone with SCS even has cranio which is my husband's case (although he has never been formally tested it's suspected he has the syndrome) Characteristics my daughter has of SCS are her cranio of course, in her case, unicoronal, also she has smaller than average ears, feet and hands, and her big toes are way bigger than the rest of her toes in proportion. She is also tiny compared to other kids her age, but still normal on growth charts. She also has a small jaw, not sure if this is syndrome related or not. I have pictures of Gwen in my profile page.

[cheryl2]

I think the look varies by the type of cranio rather than the syndrome. Unicoronals have a certain look, and bi-coronals another look.

[D-Mama's Mama]

Yeah, i was under the impression that SCS didnt have a specific look, but seeing the picture of the other SCS baby @CHOP that looked just like her completely blew my mind! But I believe you're right Cheryl in that it depends on the type of cranio- as that baby also had bicoronal and metopic cranio (which is apparently a rare combination according to the Dr's?!). D's features, other than the cranio, are the low hair line, a prominent upper crus in the ear (I have no idea what this means- the geneticist told us this), and a few things with her eyes. Her fingers and toes show no signs. She also has a high palate, but I think that was more so a result of the cranio and not the syndrome itself.