WELCOME WELCOME WELCOME

[Admin]

Here we are! A place NOT on Facebook. Just a place that we can keep and share our many experiences.

We are excited to have this special place.

[Admin]

Hello, my name is Amy Galm. I am the Director of Craniosynostosis and Positional Plagiocephaly Support Inc. My son had surgery in 2000 and a bone graft in 2006. Capps is committed to providing support for families AND for specialists who treat our children. We work together so that there are no gaps in care. Please use this space as your own. We encourage your stories, advice and more.

[Deidra Gadberry]

Hello my name is Deidra. My son Caiden was born on Friday, January 17th and was diagnosed with Sagittal Cranio that same day. We will be having the CVR done on August 4th, 2014 at Children's Hospital - Birmingham, AL with Dr. J. Grant, PS and Dr. J. Johnston, NS. Caiden has no other conditions or issues.

[maddy]

Hi! I am Amanda and my son, Emerson, was born 4/4/13 and was diagnosed with metopic at 4 months. He had surgery(endoscopic) at 5 months (9/4/13) and is in helmet therapy now. He was fine, but is displaying low muscle tone and pedi thinks he has cerebral palsy. He has a pronated right foot and we are doing physical therapy with some expressive language skills mixed within. Other than that, he is doing very well and head looks great! We are in the Richmond, VA area. We hope he doesn't require any further surgery and we hope his development continues in the right direction, but we also know these cranio journies are unpredictable.

[Admin]

Hi Diedra Welcome!!! Can I ask if you had considered the endoscopic option?

[Admin]

Welcome Amanda!

[jhei]

Hi! My son was born on Jan 20, 2014. He was diagnosed with sagittal craniosynostosis at birth. He had endo surgery at 7 weeks, March 10th. We just now started helmet therapy. Anyone wanting to chat let me know!

[missy23]

Hi, I am a daycare provider. I am a very frustrated daycare provider right now. I have a little boy 9mths old in my care. He came to me about 3mths old and I observed right away that he had really bad torticolis and a misshapen head. I mentioned the torticolis to his parents right away. I have had several children come to me with torticolis so I am familiar with it and the therapy that goes with correcting it. So then the dr. also told them that their little boy had a misshapen head and that they would need to have a helmet made for him to correct this. ( Again I have had other children that have needed the helmet therapy, I am familiar with it and it is very common) So they had the helmet made and he wore it and had his visits with the specialist etc. until the dr. told them that when the child outgrew this helmet they would need to make another one because his head was still not where it should be. This little boy is at 100% on the growth chart for everything except his head. He is BIG! Tall, long, heavy - not overweight, well proportioned. He is wearing 24 mth clothes and size 6 pampers and he is 9mths old. Well this is where my frustration comes in. Dad decided that once baby out grows the helmet they are DONE! No more helmet no more going to the specialist, they are done. The Mom told me this. My first response to her was(I was dumb founded! I couldn't believe what I was hearing!!!) "You can do that?" "You can just STOP?" I had never heard of any parent doing this to their child!!! It sent me into a frenzy! I didn't know what to do or say, so I have been talking to other daycare providers about it and my husband and friends etc. Everyone says oh you can't say anything it is their choice. I understand that but this little boy is the one that is going to suffer!! After less than one week of not wearing the helmet, he is almost back to the shape his head was in the beginning!! Other daycare parents have noticed even!!! Without me even saying anything, other parents asked if I thought his head looked worse and I said yes I do! I have been doing research and the most heart wrenching thing was reading on a support group page about a 30+ year old man who never got his head taken care of and now he has to always wear hats because he has now lost his hair. A 17 yr old girl who says my parents didn't care enough about me to get me the care I needed when I was a baby. Both of these people have been devastated by this misshapen head problem. They commended all the parents on the support page for doing right by their children and getting them the correct medical care for their condition.

So What can I do? This poor little boys head looks like a parallelogram angled. It's so sad!! My heart just aches for him. Mom is sweet but I think the Dad is overbearing and calls the shots. I just get that feeling from him. He's a "manly man", can't help but think he is embarrassed by his little baby wearing a helmet, which is stupid because it is pretty darn common! I think I read somewhere that 1 out of 200 babies will probably have to wear one.

Help any suggestions would be welcome!!! Sorry for being so long winded here;)

[gracelet]

Hello,

My daughter was diagnosed with sagittal craniosynostosis at 5.5 months old and she's now almost 6.5 months old.  Monday, May 19th is a big, crazy day for us because we're going to get a CT scan first thing in the morning at a hospital near our house.  Then meet with the neurosurgeon who diagnosed our daughter.  Then head out immediately to Boston Children's Hospital's Waltham office to meet with Dr. Meara.  (We've already decided that we want Children's to treat her, but it will be nice having someone explain the CT immediately after it's done.)  Because the 19th is now so close I'm beginning to feel my anxiety starting to creep in and second guessing if I made the appointment with the right specialist at Children's.  Even though it was the Craniofacial receptionist who suggested Dr. Meara when I told her the diagnosis and it was just a double bonus that he happened to be free the afternoon after the CT.

[krhy2013]

Hello,
My name is Cassandra, when my son was born, I noticed while in the hospital he had a small flat spot near his right eye. When I asked his doctors about it they said that it would correct itself. His first visit to the pediatrician, again I asked about the flat spot. I was told again that it would correct itself. Finally at about three months old, I took it upon myself to take him to DC National Children's Hospital to a neurosurgeon, since our insurance does not require referrals. Upon seeing the neurosurgeon he ordered a scan of my sons head, stating that he was not sure if it was plagiocephaly or craniosynostosis. When he received the scans, we were told that it was Unilateral coronal synostosis but it was only a partial fusion. I was frustrated with the caregivers who did not even know the signs of this and just blew me off. At four and a half moths old, my son had the endoscopic procedure to fix the closed suture. He had his surgery March 11, 2014, and has been on a 22h wear schedule with his helmet. He is about to advance to his second helmet after an inch of growth in two months! He is my little trooper.

[Danielle]

Hi,
Our son is 6 weeks old and was diagnosed with scaphocephaly a couple days ago. He's scheduled to have his surgery when he's 10 weeks old. Our dr said he does not do endoscopic for several reasons, but his procedure which he calls minimally invasive. He's published on his technique and has taught others to use it, and has very positive results. I felt at ease with him and felt I could immediately trust him but now I'm concerned I didn't ask enough questions. He performs about 12 of these a year.

[whaletime]

Hi my name is Sophie, my son is four months old. We went to see a cranio doctor today for his little cyst on back of his head. But doctor seems more concerned his uneven head shape and short flat forehead and eyes too close together. After appointment, I did some research online, it scared me a lot. I have been notice his left and right face structure size slightly differently since he born. And now doctor also suspect something wrong with his head. I was asked to do follow up appointment in two months with possible a CT scan. I do not know if I should ask early appointment to get early diagnostic or wait another two month. On another hand, I do not want unnecessary CT scan now if request early diagnostic. What should I do?

[mamab]

Hello! My name is Renee and my 1 month old son is believed to have Craniosynostosis. We are meeting with Doctor Proctor at Bostons Children's hospital. I noticed that there was a bone on the crown of his head that sort of poked out and did not feel like it should. i notified my pediatrician and also noticied he had no soft spot on the back of his head and also his head was misshaped. Im feeling a little less nervous from all the research that my husband and i have done but i feel like the true answers that have to do with my son will come from when the neurosurgeon actually gets to see him and answer questions that have to do with him. Just trying to pray and keep myself calm because i have two other children i have to take care while my husband is deployed. Ive noticed alot of people have been talking about the helmets after surgery but i do not see where he would receive his helmet and also if it is something that is not covered under insurance. Thank you for this wonderful forum to speak with other parents that are going through this and to be able to help one another!

[Cranio mom]

Renee-did you meet with dr proctor yet?

[angelica]

Hi, my name is Angelica and my son was diagnosed with saggital craniosynostosis when he was about a month old while being hospitalized for a shunt placement due to his congenital hydrocephalus. He was diagnosed with mild metopic as well a few weeks later. He's 4 months old now and is scheduled to have craniofacial reconstructive surgery on August 5th at Cook Children's in Fort Worth, TX. We were originally considering the endoscopic procedure but were told it was no longer an option because of his shunt. I just wanted to introduce myself and perhaps meet a few parents who have opted to have the reconstructive surgery as well and discuss what recovery was like/day to day life after surgery and things like that. I also wanted to ask if anyone else has a little one with hydrocephalus as well as cranio too and how they've handled it? Very nice to meet y'all and excited to be part of the community!