Questions about Craniosynostosis and pd for us please!

[Pembo]

We spent the morning at a childrens plastic surgeon with our 5 mo dd. She has Craniosynostosis which means that the sutures on one part of her head closed earlier than they should. So her head is mildly misshapen. It's nothing life threatening and doesn't affect her brain development but still needs to be corrected?! We had to have her head xrayed today and next week go for a CT scan. Surgery may be in our near future.

If anyone knows anything or has experience with us, please pm me. I'm feeling pretty scared right now. I'm researching on the internet today. Sometimes that makes things worse!

She's just so little and she cried pretty hard during the xrays. She didn't like having her head held still. Poor thing.

Thanks for listening.......

 

[2disneywego]

I don't have any information to offer you, but plenty of {{hugs}} and PD for your little one.
My prayers are with you.

 

[RitaZ.]

No information to share, but plenty of {{{hugs}}} and good thoughts for your little girl and you.

 

[nativetxn]

I know nothing about this surgery. I know it's scary though. 5 month olds are so tiny and you can't explain to them what is happening and they get scared too. That really hurts to watch when you are a mom. {{{HUGS}}} sweetie. I hope the surgery is easy and successful for your daughter. This will be behind you soon and that will be a relief.

Katholyn

 

[Rajah]

No info, but P&PD for you!!

 

[tkyes]

oh, poor thing.

I'll be thinking good thoughts for her Pembo.

{{{hugs}}}

tamie

 

[paras4ri]

I'm so sorry. I'm pretty sure I saw a segment on this on The Learning Channel not long ago. I'm going to see if I can find a reference on their website for you.

 

[SilverLily]

We thought my DD may have had it, but CAT scans showed all of her sutures were still open. It ended up my DD had plagiocephaly.

Before we had our diagnosis, I learned a lot about craniosynostosis from a yahoo group. Just go to www.groups.yahoo.com and do a search on craniosynostosis. I was able to read about many parents whose children went through the surgery. In most cases that I read, they said that their child looked bad after the surgery with all of the bandgages, but they usually recovered very quickly and didn't seem to be in much pain.

I hope it all goes well. Good luck.

 

[mrsdon]

My son is 20 and just went through his 3rd major brain surgery.
He had 2 brain tumors and then he had a blood vessel that was threating to busrt.
He had a bone broken on his scalp and it hasnt healed properly.
You cant see it when all of his hair is in place.
While all sugery is dangerous, I would think that this one is a "common" type procedure. Im so sorry to hear about your daughters pain.
Keep us updated.
Debbie

 

[Marla Hellwig]

Sending massive dose of pixie dust and HUGS

 

[CamColt]

Oh my! The poor little thing. I dont have any advice for you, but I know how scary it can be when a little one has a problem(DS had surgery at 5 weeks old). Just try to stay calm and let the doctors do what they do best...easier said than done I know, but try.
Prayers & pixie dust on the way!!!!

 

[WilmaBud]

Awww, I'm so sorry for you and your little one. It must be really scary to be going through this. Prayers and PD to you all!

 

[Pembo]

Thank you everyone.

I'm scouring the internet and finding out that she will most likely have to have surgery. I was just hoping it was a positional thing that could be corrected with a helmet but I don't think that is the case. We'll know more after her CT scan which is next week and then our follow-up appt is on Feb. 3. Let the time fly by.......

 

[dizneenut]

I'm so sorry to hear this, Barb.
My prayers are with you all.
{{{hugs}}}
Please keep us updated.

 

[December99]

Oh Pembo...sorry to hear this. I will keep her in my thoughts and prayers and hope things go well.

 

[Boots]

Don't know anything about it. But am sending {{{{HUGS}}}}, pixie dust, and prayers.

 

[ripleysmom]

I don't know about Craniosynostosis but good thoughts are coming your way for the little one.

 

[tiggerlover]

{{{{{{{{{{HUGS}}}}}}}}}}}} I have been in your shoes before and know the fear, but in the end it ended up that DS did not have craniosynistosis. My best advice for you right now is to get a second opinion!!! I am so glad we did before they did surgery.

We were on an emotional roller coaster for weeks, I did the research and some of what I saw and read scared the heck out of me. We sat with the first set of doctors and x-ray technicians and they were showing us where the sutures were closed and we could see it, but apparently his eye was as untrained as ours. We went to a specialist in Washington, D.C. and he couldn't understand how the x-rays could have been misread, he said DS just had a small head and that all was well and that was four and a half years ago.

My prayers and thoughts are with you. I hope everything works out well.

 

[The LK 4]

Pembo, tons of P&PD & {{{{{{{{{hugs}}}}}}}}} from our family to yours! I will be thinking of your DD a lot and hoping that everything turns out well for her. Please update us soon!

 

[mamajoan]

Pembo, God Love ya, this is a difficult situation. I am sure you will be rec'ing an abundance of prayer and good wishes, mine included.

I agree with Tiggerlover on getting the 2nd opinion.
I am sure you have great docs for your dd, it is just that a new pair of trained eyes may see/know something different.
It is good to have options.

I have dealt with numerous pediatric Physical Therapy patients with a wide variety of diagnosis. I am sorry that I do not have experience with this particular dx. The kids I have seen who have had skull deformities or problems that needed surgical intervention have usually tolerated the surgery well. I believe that any information you can find on the subject will help you to deal with the situation. Yes, some of the info may be scary but you need to know as much as possible so that you can make informed decisions. May I suggest that you write down any and all of your questions and concerns BEFORE you see the next Doc.
Tell him at the begining of the appt that you have a list and you need it completely addressed before you make decisions.
God Bless you and your family.
Joan