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[jbanever]

Hi everyone! I am new to this site and just wanted to say hi. My son Sam was diagnosed with saggital craniosynostosis when he was 12 months. He had a cranial vault reconstruction when he was 16 months old. He is 2 1/2 now and doing great although he is having alittle speech delay. He is having trouble with pronounciation. His condition was diagnosed late according to the doctor for various reasons. Did anyone here have a late diagnosis? Does anyone have issues with speech or language? This is a great site. I wish I found it sooner.

[Jennifer]

Welcome! I'm glad you found us! (Better late than never :giggle!) I hope you don't mind- I moved you post into it's own section so it would be seen more! There are a few on here who have had late diagnosis'- I believe a few with speech delays also.

Again :welcome

[Katie]

Welcome, I'm so glad you found us! I know we have a couple of mom's on here who had diagnosis's late also. If i remember right, expatjen and mikaylasmom both had children who were over 2 when they had surgery. Dillon does have a speech delay (he's almost 2.5 and at an 18 month level) which he is in speech therapy for. He also had delays with gross and fine motor skills, but has done great with catching up. His speech delay may be in part to a mild hearing loss. He's going through a lot right now, but in the future he will be just fine.
Thanks for joining and sharing your story, look forward to getting to know you :hugg

[Mom2William]

Welcome! my son also had a late diagnosis and had surgery at age 3 yrs. He is almost 4 yrs. old now. We had some speech issues and he is on the "low side of normal" for his pronunciation too. We just have check-ups for evals. with at speech therapist every 6 months. At this time, we do not need therapy but I have him checked to make sure we do not lag too far behind and can get him help if needed.
I am glad you found us and wish you the best with the speech issue.
Take care
Kim

[lucsdad]

welcome to the site! i love to hear how well the children are doing after surgery.

lisa

[mom2mykidos3]

:welcome
Glad to hear from you. I love to hear of older children. My daughter just had surgery and I love to hear good advice.
I think you will love this site. I know for me it has been a life saver.

[Jules]

Jess-

Welcome to Cranio Kids and Welcome to Denver! What a great time of the year to mover here!

Jess, I have been thinking about your post and your email. Now I'm a little worried. How well should a two year old be speaking? What is normal and what is cause for concern? Gabe is Mr. Jabber Jaw but half of what he says sounds like another luangage. Should I be worried? I've been thinking that he is right on and now I don't know.

[Jennifer]

Jess and Jules--- living in the same city and kids about the same age- do you know eachother????

Jules- what did your ped say at Gabe's 2 year appoinment? I'm sure he's fine you can always contact the ped to see what he/she thinks....Emily basically said nothing until she was 2- just the occassional ma or da and a few other single syllable words.....the ped was watching it, but wanted to 'wait and see' for a little bit longer. As soon as she turned 2- she just started talking- it was like something clicked in her- boom---the girl says everything.....not everything is fully understandable..but is talking....

[Melissa]

Welcome to the group! Bryson was diagnosed with Pfeiffer at birth and didn't have any speech issues, but my nephew Tyler (no medical issues, and turning 3 at Thanksgiving) has been slow to learn to talk. Six weeks ago Tyler only said a few words here and there, and half of them couldn't be understood. Now, you can't shut him up, LOL, and he's very clear in his speech. It's really amazed me the way he's changed practically overnight! I'd just suggest working with Sam as much as you can, and watching how you and family members talk - try to enunciate clearly and use words that are easier for him to pick up. For instance, instead of "carpet", say "floor" - he can always learn the different types of flooring later. I've also got friends who's children have different craniofacial anomalies and speech issues who've had good luck with basic sign language and a couple of other things (I think one is called the PECS system, or something similar). I hope things go well for you, and that you enjoy the group!

[laurensmom]

Hello and welcome..you found an awesome group! Our daughter's condition was diagnosed late as well and she was 2 when she had her surgery. I would love to see photos and hear more of your story.

[plukids]

Hello and welcome to CK! My daughter was diagnosed at almost 11 months and had surgery 1 week shy of her first birthday for left coronal & metopic cranio. She is right on track with speech. I cannot keep her quiet...LOL! My son (no cranio), Casey, has had and continues to have a hard time with his speech. Last year I was the only one who could understand a lot of what he said. He seems to be doing much better over the last year. I did have him evaluated in the Spring and was told he was still too young to tell. The speech therapist said he needed a little more time to develop (he had just turned 3). Hopefully you will see change over time. I agree....work with him. One of the suggestions for my 2nd son (also hard to understand early on) was to have him look in the mirror and watch his mouth form the sounds. He would put his tongue thru his teeth for s and t. The ST said to show him with my mouth the proper "look" of those sounds and have him mimic in the mirror. It has helped him quite a bit.

[frankiesmom]

welcome to the site. You will find alot of great info and good friends here!

[jbanever]

Hi Lauren! We thought that Sam just had alot of molding when he first born because his head was mishaped. I was in labor for 36 hours and finally had to have a emergency c-section. He wasn't moving down so I couldn't push. Turns out that it was because his head was already fused and not pliable enough to move down the birth canal. But everyone thought it was just because he was early and when he was born they thought just because labor was so long his head was just alittle awkward. We went 12 months. His head was always 99% on the growth curve and he had this ridge on the top of his head and the back was......well, the best I can describe is his head was like a bullet!!! At his well baby visit(12 months) my pediatrician decided it wasn't normal but because he was hitting all his milestones and developmentally right on, it wasn't that concerning. I insisted on a referral to a neurosurgeon. We saw 2 of them who right away knew what was wrong. I carried alot of guilt for not asking sooner. I even questioned whether or not to have surgery.....it was hard as you well know.Plus, I was pregnant with my other son at the same time. Ugh, nightmare! But he did great. I'll send pictures! I'd love to hear your story!!!













Hello and welcome..you found an awesome group! Our daughter's condition was diagnosed late as well and she was 2 when she had her surgery. I would love to see photos and hear more of your story.

[Matthews Mommy]

Yes, my Matthew had his surgery for sagittal at 5 months and has severe speech delay in articulation (pronounciation). My suggestion for anyone is getting a full developmental evaluation done by Early intervention, because sometimes with speech other delays or development issues are present. Thats not always the case but it does happen a lot and Matthew has a lot of other problems too although he has the IQ of a genius, he does not socialise, he is repetitive, limited attention and interests, frequent outbursts, no sense of danger, finger flapping etc. He was just diagnosed with Aspergers Syndrome (High functioning Autism) I also have an 8 year old son with Asperger's. Good Luck and let me know if there is anything you want to ask.