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4 month appt and ended up at the hospital - UPDATED Post 13


Forum: 2011 Playroom

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  #1  
October 4th, 2011, 06:16 PM
fancypants27's Avatar Mega Super Mommy
Join Date: Nov 2010
Location: Montreal, Quebec
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Brought Zoey in for her regular 4 month appointment today. Dr immediately noticed a ridge running from the top of zoeys head to her nose. (I had noticed it as well but just thought she had her dads forehead...now that DR mentioned it, DHs forehead is more of an indent and not a bump..so im kicking myself). Zoeys head size is not following her 5th percentile curve and has dropped, so dr was concerned and sent us to the hospital for some xrays and zoey will have to see a pediatric neurosurgeon.

She thinks it *might* be craniosynostosis. Does anyone have any experience or information at all on this?

I obviously wasnt prepared for this when we went to the pediatrician so didnt have a list of questions and since we got home from the hospital i have been using dr google. Ugh

Her appointment otherwise went great. She is up to 11.5 pounds and dr has said she can start eating cereals (rice, oatmeal and barley). She is almost in the 25th percentile now for length " 24 inches. She didn`t make a peep after the first needle, 2nd one she wailed for 2 minutes and then was great.
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Last edited by fancypants27; October 7th, 2011 at 12:24 PM.
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  #2  
October 4th, 2011, 08:15 PM
Petuniababoon's Avatar Super Mommy
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My nephew had it. They did surgery on him, and he has developed normally. I know this must be so scary for you right now, but hopefully her problems (if she has any) will be easily corrected. Keep us posted.
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  #3  
October 4th, 2011, 08:44 PM
angelsailor288's Avatar Platinum Supermommy
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I dont know anything about it but I hope everything is ok.
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  #4  
October 4th, 2011, 09:06 PM
fancypants27's Avatar Mega Super Mommy
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Quote:
Originally Posted by Petuniababoon View Post
My nephew had it. They did surgery on him, and he has developed normally. I know this must be so scary for you right now, but hopefully her problems (if she has any) will be easily corrected. Keep us posted.
Thank you for posting this! Ive read mostly good things about the surgery and outcome which is a bit of a relief.

How old was your nephew when he had the surgery? And do you know what type of cranio he had? Zoey ridge is the metopic ?thing?

The waiting is killing me... I just want to know either way.
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  #5  
October 4th, 2011, 10:31 PM
BlueEyes09's Avatar Mega Super Mommy
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I will be thinking of you and your LO. KUP!
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  #6  
October 5th, 2011, 02:12 PM
Petuniababoon's Avatar Super Mommy
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Quote:
Originally Posted by fancypants27 View Post
Thank you for posting this! Ive read mostly good things about the surgery and outcome which is a bit of a relief.

How old was your nephew when he had the surgery? And do you know what type of cranio he had? Zoey ridge is the metopic ?thing?

The waiting is killing me... I just want to know either way.
I had to call my SIL because I couldn't remember. She said his was the lambdoid (sp?) one, and that it was one of the rarer types. They did some genetic testing on my nephew because they were concerned that he might have some underlying hereditary syndrome, but his tests were all negative. He was about 5 months old when he had his surgery. Just the idea of doing head surgery so young is scary, but he healed well, and the one surgery completely solved the problem. I hope the neurosurgeon gives you good news!
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  #7  
October 5th, 2011, 02:12 PM
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I've never heard of this before but wanted to offer hugs!! Thinking of you guys! KUP!
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  #8  
October 5th, 2011, 04:33 PM
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I know that is so scary! ((Hugs))
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  #9  
October 5th, 2011, 04:53 PM
fancypants27's Avatar Mega Super Mommy
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thanks everyone I appreciate the well wishes. Very scary situation for us. We were told we would have news next week, so I will keep everyone posted.
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  #10  
October 5th, 2011, 06:16 PM
Rae-of-Sunshine's Avatar Mega Super Mommy
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I will be praying for you that this week goes by quickly and that the outlook is good for surgery to clear this up! I had never heard of it before either. How scary though to go in for a routine appt and end up at the hospital!
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  #11  
October 6th, 2011, 08:41 PM
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I just happened to be lurking... A good friend of mine has a baby with this. Her baby just had the surgery a couple months ago and is doing very well. I know it is so, so scary, but from what I know, it is something that can be fixed.

If you want to message her on Facebook, here's a link to her profile:
https://www.facebook.com/profile.php?id=668827183

And here is her blog:
Three Birds Singing

(If you contact her, you can tell her I gave you her info. My name is Emily Miller.)

I know she is also involved with this organization:

CRANIO ANGEL NETWORK

Best of luck! And big hugs! I hope this isn't it, but if so, I'm thankful there are procedures to fix it.

Last edited by Sneetch; October 6th, 2011 at 08:44 PM.
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  #12  
October 6th, 2011, 09:54 PM
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I happened to be lurking too, and had a good friend whose little boy had to have a head surgery too, and he was fine as well- he's like 6-7 now and just fine GOOD LUCK! Hopefully she's just fine and its not an issue, but we'll all be thinking about you just in case!
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  #13  
October 7th, 2011, 12:19 PM
fancypants27's Avatar Mega Super Mommy
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for those that dont use facebook, we got the results of the xrays this morning and the sutures are in fact fused. Pediatrician told us she will definitely need surgery. We go see the neurosurgeon on Tuesday morning. We should have some more information on our options then.

Good news in all this is that it was caught early and there doesnt seem to be any genetic factor or complication (besides her small head), so surgery should be able to correct it.

Thank you everyone for the T&Ps and the personal experiences as well as the links.
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  #14  
October 7th, 2011, 01:20 PM
ldhopkins's Avatar Veteran
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Just a lurker, but I had craniosynostosis as a baby. They thought I had encephalitis bc my head was so big (mind you this was 1985, medical science has advanced alot since then, lol). The only complication I had was some blood loss that required a transfusion, and I can still feel the scars on my head when I touch it. Just me, but I had a cutdown because they had a hard time with my IV, and I'm still a hard stick, lol. Good luck
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  #15  
October 8th, 2011, 03:23 AM
Julie
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Good luck, you and your lo will be in my thoughts and prayers!
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  #16  
October 8th, 2011, 05:24 AM
misfitinmn's Avatar little miss needs a nap
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It sounds like, although the thought of head surgery on such a small one is so scary, it definitely leads to positive results! Will keep your family in my prayers!
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  #17  
October 8th, 2011, 04:33 PM
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I hope everything goes well and you'll definitely be in my T&P's!
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  #18  
October 9th, 2011, 11:30 AM
Peace.Love.Pepsi's Avatar Just another mommy
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My cousin had it, hes 22 now and no ill effecs from the surgery.
With the funny way logans skull is growing, its a concern that is one of the possible problems. Ill know more next week. Hugs. such a scary thing
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