Questions about Craniosynostosis and pd for us please!

[kbeverina]

I'm so sorry to read this--I can imagine how scared you are because they believed my sister's baby had this last summer. It turned out he didn't, but I did a lot of reading in the meantime and found a few links.

Here's a message board:

http://pub32.ezboard.com/fcappsmessageboardfrm1

Unfortunately it looks like I deleted my other links when it turned out that he didn't have it. From what I remember, I did feel somewhat reassured when I looked into it and read how successful the surgery is. I also have a friend who is a photographer and it turned out that she was often asked to take the before and after pictures of the children--she was very reassuring as well. I'll be thinking of you--hope everything turns out well.

 

[Tuffcookie]

Barb, Prayers for you and your DH.

TC

 

[Mackey Mouse]

Hugs and PD Pembo. I will keep your little sweetie in my prayers..Please keep us informed how you are all doing..

 

[CathyCanada]

Hugs and prayers for you both!!!!
CC

 

[joeokw]

One of my friends youngest Ds had this condition when his Ds was about the same age as yours. . My Dw and I are RNs and we both worked on a neurological unit at a large NYC medical center ( World Renowed ranked 4th in the the US News and World Report) years ago. My friend Ds was exmained by 4 neurosurgeons 3 of them recomended surgery. the only nuerosurgeon who said that the non- surgical approach , the " wait and see" treatment could avoid surgery and it's complications. was possible. That neursourgeon was the one I worked. with. I know they were trianed with the latest techniques , but were always taught the conservative approach also. My friends were very relieved to find out that surgery was not the only alternative in their case. The brain is very resiliant in the early part of life .In their case, the child was examined every 4 weeks and he did very well and now is a heathly 8 yo. I do not know if this helps, but I hope that you will consider all the alternatives of treatment.

The name of this pediatric neurosurgeon is Dr. Goodrich Chairman of the Dept. of Pediatric Nuerosurgery
Montifiore Medical Center.
Bronx, New York

 

[joeokw]

Pembo I noticed You live in NE Ohio. The Clevland Clinic is one of the top 4 neurological programs in the country. Maybe you could get a consult from one of their pediatric neurosugeons.


God Bless

 

[Liz]

I'm sorry you and your dear one have to go through this. I hope everything goes real smooth for you.

Sometimes I hesitate to search on the internet for medical info because I'm such a worrier I'm likely to find something that will just upset me more!

Sending much pixie dust and prayers your way!

(((((((HUGS)))))))

 

[Dan Murphy]

Sorry to hear the news, Pem. I am sure things will go well, they usually do with the little ones, so resilient they are. Prayers and best wishes are with your daughter, you and famiily. {{Hugs}}

Dan

 

[Lars624]

Pembo-
I don't have any info or advice to give you. Just a {{hug}] and an offer of support.

 

[Dream]

I am so sorry you are having to deal with this. {{{hugs}}} and lots of prayers coming your way! Looks like you have gotten some excellent advice and info here. The only thing I can add is that I have seen a few children with this problem during the course of my hospital nursing days. They all did VERY well...surgery was the option of choice for all of them. The surgeoun performing those surgeries is now retired...but it's nice that you got a couple of names from this thread! The power of the dis. Hang in there and let us know how this goes.

 

[JasonLyons]

I just prayed for you guys

 

[Robinrs]

Pembo:

Sending major prayers for you and your baby. Give her a big hug for all of us.

God bless--

-- Robinrs

 

[wdwnutze]

No advice but LOTS of pd and hugs!!

 

[POLLY ANN]

Pembo, have gone through this whole process with ds4, who ended up having surgery.

If you have questions, please PM or email me and I will answer your questions the best I can.

 

[Towncrier]

Sue and I will keep that precious little baby girl of yours in our prayers. If there is anything more that we can do, please don't hestitate to ask.

 

[CRB#33]

I missed this yesterday!

Prayers for you and your little one!

 

[Pembo]

I am so overwhelmed by all the pm's and nice words and info I'm getting from the DIS. WOW is all I can say.

Today I'm having a hard time looking at her without crying. What may come is so scary. The CT isn't until Thursday (23rd) and then we don't see the surgeon until Feb. 3. So we are in a huge holding pattern.

joeokw-I've already checked out the Cleveland Clinic site and e-mailed a friend who is in the know about drs and such. I'll definitely be calling them to get a second opinion. Thank you for the info about NY.


Now we wait.....Luckily this doesn't affect her in any way. She is still the sweetest, happiest little baby. Laughing at her brothers antics and wanting to snuggle.

 

[janette]

How hard for you Praying for the best treatment and that all will be okay. {{{{HUGS}}}} for you.

 

[LuvN~Travel]

Pembo, first of all I'd like to let you know we'll be keeping you guys in our prayers.
Have the doc said by any chance if your daughter might also have some sort of 'syndrome'? You might ask them about it next visit.
Well, here goes.... my daugher, now 13, has a syndrome called Crouzon's. At least we think so. She doesn't really 'fit' into any one exactly. There are several in that area of craniofacial syndromes and she 'fits this one most.
She was also born with craniosynostosis. As a matter of fact her's was so bad, that we had to do an emergency C-section after 16 hours of labor, since there we NO WAY she was coming through the birth canal. Luckily my blood pressure was jumping all over the place, so the doc finally said the heck with it and did the C-section.
Her head on the back was fused so bad that it even made a little ridge from about midway back. She had her first expansion surgery at age 5 months, too. She looked awfully bad at first, very scary for us. But, do remember that head surgeries always make the kiddies swell and bruise so. They actually rally back though in a few days. I think she went home after about 4 or 5 days.
In her case, it really made a difference. She hardly smiled any before the surgery, couldn't sleep on her stomach, and generally looked miserable. She must've had some awfully strong pressure in her head. (BTW, she also has hydrocephelus, so I'm SURE she had a great pressure). After the surgery and going home, though she changed overnight. She was smiling, breathing better, could sleep on her stomach, etc.... All the things that five month olds should do. Of course the doctor told us to lay her on her back a lot so they head could properly expand in the back afterwards. But, no not my child! She heard and decided to be stubborn. She could now sleep on her stomach and KNEW it.
Also, when she was a year and a half old, she had to have the front part of her head done as well. It had fused by then, and was making her head look 'domish', if you get the drift. That surgery also made her act differently. We could really tell the difference in her overall learning and health afterwards each time.
If you'd like her story is on the Crouzon's site. It's www.crouzons.org or www.crouzon.org. I never can remember if it has the letter s or not on the end. And, her name is Faith, under the bio stories.
We also have a listserv so if you'd like to join to ask members questions about the synostosis, feel free to join up. Many of the kids with these craniofacial syndromes have the premature closure as well.
Good luck with your daughter. Feel free to email me at my email in my member listing. Kim
P.S. sorry for the long message.....