RE: To [wasSaw Neuro today>>>HELP]

[Guest guest]

:

You have a right to be upset... I've been told that neurosurgeons are just not great with bedside manner (ours was quite rude, too, more than once). Maybe someone should videotape them during a consultation....

My son, Quinn, was breech, and born via c-section with an elongated head. We did the CT scan at one week of age. His sagittal suture was 2 fingers wide apart. I asked for a referral to see a neurosurgeon when he was 4 weeks old. He told me "that's a big head." When I asked about options if nature didn't change the shape much, he told me that helmets were only for the opposite problem, flat back, wide front. He wanted to see us back in 3 months. You can see our "story" under the files section Parent's Stories titled "Getting the Word Out" --

8 months is NOT too late for a dynamic band like the DOC band or Starband, though I do not know if the Starband makes a specific band for an elongated/scaphocephalic shape. Cranial Technologies does -- instead of Velcro on one side it is in two pieces and uses rubber elastics on either side to hold it together.

We chose to go this route for a few reasons

1. His head had no slope whatsoever, the back of his head went straight back over an inch.

2. When he laid flat on his back his head sort of pushed his chin towards his chest.

3. His forehead was pinched at the temples

4. Of all the heads I looked at, I did see long ones, but never did I see one that just jutted straight out.

5. For the longest time when he sat up, his chin still sort of went towards his chest. He could hold it upright when something held his attention, but it wasn't, at the time, a natural position for him.

We were in the band for about 4and 1/2 months. We were cast on his six month birthday, started 3 weeks later and finished around 10 1/2 months. We had to travel from Cincinnati to Chicago every two weeks, but I'd do it again in a heartbeat. However, though he was perfectly well, and ate fine, he didn't have much of a growth spurt (only 2 lbs in that 4 months), and so we didn't see as much correction as we could have, I feel. My primary objectives were met, though, so we didn't go for a second band. I'm looking into cranial sacral therapy, possibly, for his back suture and front suture are still open a bit.

From what I've read, it's not really that common for the head to elongate after birth, so that is probably why the Dr. was so surprised. Did he offer any other possible reasons for this happening?

If you'd like to talk more, please feel free to e-mail me at tnt@...

some pictures are out on the plagiosite -- Under Head Shapes /Quinn

and HKali

I was going to update them tonight, with before and after photos, but have been getting "oops try again later messages." So I'll try again tomorrow.

Go with your gut. Know that there are treatment options out there if you decide to go that route, and make sure that you cover all avenues of why this would happen in the first place if one dr. can't give you that information. You have a right to know the different options available for your son, and to know what is best for your son. Let your instinct help you with the knowledge that you get -- and if you ever feel overwhelmed or scared, there are a WONDERFUL bunch of people here to help you through the rough times.... *smile*

Take care.

H.

(aka Kali, mom to Quinn (11/19/99), DOC band graduate for scaphocephalic head shape 10/00)