I have met 3 other sagittal cranio families

[Bean]

Yeah, so last week when we were at the helmet place at BCH we met a family that was just picking up there sons helmet (same doc, same funky helmet). We exchanged emails and have been talking ever since. I told her to hop over here, but I don't know if she has yet ...

Then, today, while waiting for the elevator, I see a cute little boy come out of the elevator with a funky SAGITTAL helmet! Wow - so I started chatting with the Mom a bit (they had just picked up the helmet) ... but she didn't really seem into talking too much so, yeah ... that was that. (I can't say I blame her, either, because when we go to the helmet place we look like we are packing for vacation! I have already learned that it can take some time there and I have enough snacks and toys to keep Maggie busy for HOURS ... plus, I am always a bit frazzled after the ride and getting into the shop ... basically, I look like crap).

So then ... while waiting for our appt. a Dad came in with his daughter - with a funky sagittal helmet TOO. Crazy! We talked for quite a while, but the little girl started crying, then we were called in, so I didn't get to tell him about this awesome place or exchange emails. bummer. I have it in tight with the people that work there now, so next time I am there I am going to ask if I can post something ... ummmm ... what should I post? Should I make a flyer myself, or is there something I can just print out?

Pretty cool, though, eh? Now Maggie wants a helmet like Jake's. A pink one. Hmmm ... I tried the bike helmet thing, but it didn't fly. I will have to work Mommy magic with this one ...

[Jenny]

Thats awesome! Check out the resources section.. there's already some flyers and things made up. Katie also has business cards.

[dannlark]

That's so cool!!! I printed out a couple of the flyers on here to take to Dallas with me and I actually talked with a family that was seeing Dr. Fearon for Sagittal and gave them one. You should definately print a couple out and post one there if you can.

[amizzle]

How fun to meet other people in the same situation. Every time we get our helmets we meet other families who went to the same surgeon and who are in the same situtation. We also meet other families when we go follow up with our NS, since he opperates in a 'clinic' fashion with his cranio cases. It is always so fun to chit chat with the other families, I look forward to it at each of our appointments, glad you are having the same experience

[Bean]

Ha - Amy, I had no idea I would meet so many people with Cranio ... I met 2 more at Jake's appt last week. I thought it was so rare, and here it is, a month from Jake's surgery and I have met 5 other families ... not just cranio, but sagittal getting the same helmet.

If it's not as rare as I thought, than WHY don't peds know how to spot it? Why isn't it more well known? Why is it so hard to get a diagnosis and/or treatment? :pullhair

Like I said to my husband last night - if any one of US can spot a babe out and about or at the playground or pics here online and call it, why can't trained medical professionals? Anyone?

I have found the same to be true with Maggie's allergies, though, too. I guess so much changes in the first few months/years of life ... does anyone else have a "Grrrrrrrr" health issue with peds other than cranio?

[cadensfamily]

I met a gal scrapbooking this past weekend that her child has to have cranio surgery as well. We have the same PS. The gal works at Archiver's part time and I was working on Caden's surgery album and the hostess asked what happened and I told her and her co-worker was in the store with the baby.... it was such a wierd but great feeling.

[Ghadeer]

My son completed his 5 month age and i found out recently that he is a cranio sagittal, I did a cut scan for him and show the results to more than 5 doctors, some doctors are saying that i should go with surgery and some others are not recommending it..i'm really confiused..i heard about the helmet treatment, is't possible to use the helmet rather than doing the surgery?!! God Bless all your kids

[mummybeelee]

Hi Ghadeer and welcome to CK!

I am sorry you have recently received a Cranio diagnosis for your son. If you post a new thread over in the Welcome Mat http://www.craniokids.org/support/forumdisplay.php?f=4 I am sure you will get lots of info and advice from all the wonderful members here.

For craniosynostosis, a helmet on it's own will not work as the sutures are fused shut so growth can not take place like with a normal skull. Helmets are often used in the treatment of positional plagio where the head can be moulded as there are no sutures fused.
The helmets being discussed here are those used after endoscopic surgery. This surgery is less invasive than the CVR, is carried out at an earlier age and is followed by helmet therapy to shape the skull correctly afterwards. I am not 100% sure on the details but I think at 5 mths your son would be past the window for endoscopic to be carried out and would need the CVR surgery.