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Post by angelica on Jul 23, 2014 11:53:09 GMT -5
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!
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Post by angelica on Jul 23, 2014 14:09:25 GMT -5
I meant cranial vault reconstructive surgery*, not craniofacial. Haha!
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Post by angelica on Jul 23, 2014 14:09:43 GMT -5
I meant cranial vault reconstructive surgery*, not craniofacial. Haha!
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Post by mandylp318 on Jul 24, 2014 15:18:45 GMT -5
Hello, my name is Amanda, and my daughter Avery was born 01/21/14. At her 1 month check up, her Pediatrician suggested we get xrays. At the time they said the sutures were open. But today at her 6 month check up, they decided to send us for another round of xrays tomorrow for a mild case. Just wondering if I can get opinions on her head and how do I post pictures? Can I post them from my phone?
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Post by Joanna on Jul 27, 2014 16:46:20 GMT -5
Hi my little boy has been diagnosed with trigonocephaly. This was in April . He is meeting a specialist in September to see if surgery is necessary . As parents we are concerned why its taking so long for an appointment. I have done lots of research and it says that ideal time to correct trigonocephaly is 4-10 months. My little boy is 12 months and 7 days . We are worried that we will have to wait a few more months for surgery if it's required . Does anybody know when is the best time for an operation? How long should we wait from diagnoses until operation?
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Post by shelibell on Jul 31, 2014 14:44:11 GMT -5
Hiya my name is Michelle and I have a little boy 5 weeks who has metopic I come from Ireland and wondering what age most metopic surgery is done?
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Post by nicsmomma on Sept 21, 2014 20:37:20 GMT -5
Hi, my name is Gina, and our son, Nicholas was diagnosed with sagittal craniosynostosis. He is scheduled for surgery October 27, 2014 at Birmingham Children's Hospital being performed by Drs. Ray & Johnston. I noticed his head for a long time wasn't quite right, but I felt like I was being paranoid, so I waited until he was 6 months old and asked his pedi. She sent me for an xray, they sent me to see the plastic surgeon and neurosurgeon where they confirmed the diagnosis. Nicholas is our fourth son. Our other boys are ages 9,11&13, and have no health problems. Other than his diagnosis, Nicholas is healthy and meeting all milestones. These next few months will be the toughest we have ever faced. With prayer and support, we will make it through, although we are completely blown away by this. I am glad I found this site. I have been on craniokids, but I can't ever post anything for some reason. Thanks for reading!
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Post by Nicole on Sept 25, 2014 17:22:39 GMT -5
Hello, my name is Nicole and I have a 19 month old who I suspect has a mild case of craniosynostosis. He is developmentally delayed with a right sided hemiparesis and has been diagnosed with sensory processing disorder and dyspraxia as well. He is constantly hitting his head with his hands or banging it off anything and everything. Two neuros have seen him, one suggested craniosynostosis but never referred us to a craniofacial center and seemed to blow us off. The other neuro barely even looked at his head and said no way. I am beyond confused. Grant has a slightly smaller head and has a ridge in the middle if his forehead. Looking down at his head it is triangular in shape. He receives cranio sacral therapy and his therapist says his right sphenoid is "stuck". I have no idea where to go from here and am so scared that this was overlooked!!
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Post by Erin on Sept 30, 2014 14:01:55 GMT -5
Hi Everyone - my name is Erin and my 12 week old son was just diagnosed with saggital craniosynostosis on Friday (partial fusion but the 'majority'...not fused at front or back-most part). We have an appointment with the NS team at CHOP in Philadelphia next week (Dr. Heuer) but I am reeling with fear about the entire process. Anyone have experience at CHOP? Dr. Heuer? I know my son will be right on the cusp of the age where endo is an option vs. CVR so anxiously awaiting our appointment to see what our options are. Helmet therapy sounds arduous but a less invasive surgery still sounds like the best option. Any type of support from this site is greatly appreciated! I also visited and tried to register on the craniokids.org website but haven't been approved as a user for over a week so I cannot post questions or blogs. Looking forward to supporting everyone in their similar journies.
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Post by Lindsey on Oct 12, 2014 17:00:31 GMT -5
Our daughter Liberty was born 6-3-14. She was just diagnosed (confirmed via CT) of right coronal craniosynostosis. She is scheduled for surgery on 10-21-14. She is a healthy, happy baby otherwise. She'll be having her work done at Iowa City.
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Post by Melissa on Dec 12, 2014 11:26:40 GMT -5
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. Hi..My son Caleb.. Had surgery done in 2005, When He was 5 months old surgery for craniosynotosis on lamboid and sagittal sutures...He 9 years old today... Having issues in school...I was wondering if some other parents kids are having the same issues and what kind of disorders... My son is very respectful and is good behavior in school... The problems are with the work... he has had testing done for a auditory disorder and he it came out he on the borderline... He had psycho educational done by the school psychologist thats say he hads problems in reading and now math cause of this common core we have in Ny...I am just lost and trying to get all the help.. I can for him... They can't pin point a disorder for him and if they can't he won't be able to get the help in needs in school....If anyone can help me that would be great with any information thank you
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Post by wesleysmom on Apr 20, 2015 15:16:56 GMT -5
Hello, my name is karyn, and my son Wesley, who is going to be six months on May 1st, has exhibited some signs of craniosynostosis which has prompted our doctor to refer him to a specialist. We first noticed his fontanelle was smaller and more difficult to find than my previous child's. We also noticed his head was more boney, with "ridges," but honestly thought nothing of that. This was in January when he was two months old. She had some x-rays done and they said all looked normal. At his most recent check up, however, the doctor could not find the fontanelle at all and commented that his skull looked less boney but assymetrically raised. She sent him for x-rays again, which was awful because now he is more mobile and we had to restrain him. Those x-rays came back indicating no change, but the other concerning thing is that his percentiles are all in the upper ranges. He is in 9 months clothing at 5 months, but his head circumference is only in the 9%, and that is down from his last well check. We have an appointment at Milwaukee's Children's Hospital, because I did a search for a top rated pediatric surgeon with experience in this, and that was the closest place. Has anyone else had experience with this hospital? I am obviously worried beyond words, as all of us are, especially because I keep reading that the most successful surgeries are completed before 6 months of age, and he is less than two weeks from that milestone. Thanks in advance to everyone on here for your input and support. It's heartbreaking to think our sweet, smiley little boy may be facing such a scary thing.
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Post by mommyx1 on May 21, 2015 6:07:04 GMT -5
Hello all, my name is Gina and my lil one was diagnosed with metopic craniosynothosis this week. She is 6 months old. Doctor are not recommending surgery at this time and there was no mentioned of trigocelphaly. But they did say she had slight pinching in her forehand. They basically said it was up to us if we wanted to do the surgery. I just hope we make the right call.
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Post by Ginny on Jul 9, 2015 10:35:54 GMT -5
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! Hello there, I see you did surgery quite early. My son is 2 weeks old and has been diagnosed with coronal and lambdoid synostosis. Could you please let me know how things are going now? thanks.
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Post by alfiesmum on Jul 22, 2015 7:21:19 GMT -5
Hi My name is Angela. I am in the UK. I have a 9 month old boy who has metopic craniosynostosis with trigonocephaly. He is going to have it corrected at GOSH within the next 9 months. I also have a 6 year old who has multi suture cranio. We are waiting for an appointment with the craniofacial team for him. My 7 year old boy is having a CT scan right now to check as he had a ridge as a baby/toddler and his head is elongated, he has aspergers ASD.
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