developmental delay question

[Tanya]

I don't think it has really helped since they only come once a month but they do give good ideas on how I can work with her myself.

[Josiah'sMommy]

Ladies, my son just had a CVR last week at age 3 because we thought surgery would just be cosmetic. It is a bit of a long story but I encourage you to read "Josiah's Story" on the "Our Story" Board. He has always been developmentally delayed and I feel strongly it is related to his cranio. After reading our story let me know if you have any questions.

[kelly(worried mum)]

hi there,

im new to this so plz bare with me

i am a mum of a 2 year old boy who was born with a ridge from his hair line to his nose, he seen a ped who said everythin was normal and she would continue to messure his head every 6 months. he is nearly 3 years of age now and has development delays i.e speech, delayed motor development. he also has physiotheripy because he has a problem with balance. i am really worried as i haven't had any answers or diognosis for whats wrong with him.

[JJ&L mom]

I am not sure where you are located but you should make an appt to see a pediatric cranio facial plastic surgeon and neurosurgeon team. We met with the CFPS first and then met with the neurosurgeons he works with the most after the CT results were in. My pediatrician did not EVER catch the saggital cranio in spite of my repeated questioning of the same ridge you mention. Upon seeing the CT results - there was no doubt the sutures were closed and had closed prematurely.

Now, your boy is 2 so those sutures should be closed already but they should be able to help determine if they this it happened prematurely, if there is any intra cranial pressure.

One thing to brace yourself for is; I doubt either specialist will say you really need surgery - unless there is intra cranial pressure, they leave it up to the parents to decide. That can be hard as we want to know FOR SURE surgery is needed. You will have to be comfortable making that call with the information you gather. Read the stories on this site and that may help you decide what course of action to take.

Best wishes in your journey.

[kelly(worried mum)]

thankyou for the reply,

im from the liverpool area.
my son has had this ridge since he was born, so does that mean it did close early? i sent an email to a neurosurgeon asking for advice, i explained that my boy was born with this ridge and about his delays and could he have metopic synostosis, he replied straight away and said the answer is yes and he needs to be referred straight away. i took this email to my dr who has now referred him..... i am now just waiting for the referral to come through but i crnt help worrying whats going to happen next.

[kelly(worried mum)]

i have now uploaded pics to my profile

[Lori999]

My dd was diagnosed at age 2 (sat sutures). At time of diagnosis, we have been participating in Early Intervention since she was 7 months old. She is about 4-6 months behind with fine motor skills and speech. We were going once a month like you and worked with her at home. She is stating their toddler program next month so she will get both services twice a week. I don't want to be in the wait and see by the 2 PS and 2 NS both think she has a mild enough case not to operate. Very frustrating. They say they don't know for use if her delays are due to crainosynstosis or not. We are also seeking genetic testing. No other diagnosis yet.

[2beaglemama]

I too am stuck in the "wait and see" category, and we had developmental delays at the time of diagnosis; they were part of the reason we did genetic testing. That was at 5/6 months; she was not rolling or holding her head off the floor at that point. After getting her involved with Early Intervention on a weekly basis, she finally rolled at 8 months. Now that I've had a second non-cranio baby, I've realized just how behind she was. I don't think she could hear for the first 6 months. She's now 13 months and still not walking, her speech has actually regressed (maybe due to the new baby), and she doesn't seem to process sounds correctly. Like, she gets the intonation (sing-song sound) of "uh-oh" but she won't say the correct sounds. Now I'm noticing more skull changes and it's really frustrating... I'm actually hoping we get sent for another CT scan to see if something's changed. I'd really like to get this taken care of...