'Let's use this finger.' LOL!!!!! I haven't been able to comment on these much because I often watch my subs while I'm doing dishes, cooking, etc, but I've watched them all. Thanks for sharing.
I am glad u two are bringing awarness to this. If your not comfortable answering I am just wondering why your beautiful daughter didn't have surgery if it was needed ? Did you guys not want surgery or did ur pediatrician not notice ? I'm a mom of 3 and I just wanna know if u didn't know ig theres certain things to look for . my youngest will be 2 in a week would i know already ? Praying for ur family
Our daughter was treated. She has had many surgeries to date, with more as she grows older. This was done in order to discuss what would happen if cranio was left untreated. While we were learning more and more when our daughter was young, we heard some stories about parents who thought the surgeries were not needed, that they were cosmetic. We wanted to dive into that in a way to shed some light on it. As for your child, I would say that in most cases, a parents instinct is usually right. If you are worried that your child may have something wrong, bring it up the their doctor. MOST cranio is detected at birth or within the first few months. If it is a minor case, then there may be nothing that needs to be done. But, as I said, if your gut is telling you something is wrong... pester doctors until your gut no longer feels that way.
@@craniofamilyvlog1496 I appreciate you answering my question. You two are amazing parents. And this is defiantly an issue that should be discussed more. When I asked the pediatrician why they measure the babies head they said just to make sure everything is healthy and normal. This is my first time learning about this. Thank you.
My son had this and his 1st surgery was a fail at 10 mths old and the 2nd. At 5. Finally by the 3rd surgery at age 7. All was successful and no more surgeries needed. Though now at 28. He has major migraines often. He will not go to a Dr because he has a white coat syndrome and just does not like Drs or needles. Not sure why he still has so much pressure though.
My son is 3 and they think they have found cranialsyntonosis on his MRI. The reason they did an MRI is because he’s been having seizures. Thank you for this video
It's unfair to speak negatively about parents who choose not to go ahead with surgery - I refused surgery for my now 16 year old, having the top of my baby's head cut off, chopped up/smashed and reput together like a 3D puzzle was the risk I wasn't going to take with his life, and health - we also have a bleeding disorder, so no, not the option I was taking.
@@wilmarydc I'm sorry you are having to make this huge scary decision - my son is doing pretty well, he has bilateral coronal craniosynostosis. He does get headaches, but I have severe migraines and he doesn't get them on that level, he does get nose bleeds - but I'm assuming this has more to do with our Von-Willie brands disease as his older brother and I used to get them a lot when we were younger too, he does get some sinus issues especially after swimming. He does have a bit of a slight bulge in the top of his skull - but this is unnoticeable unless you are purposefully feeling for it as he has very thick curly hair. He does have a large forehead - but his father, and his father etc all have big foreheads - it doesn't look out of place, I wonder if they all have it then? It certainly isn't hindering him on the girlfriend front. I haven't had his eye pressure tested, but we might do that at his next appointment just to be safe. On the academic front I can't tell you how he stacked up against other kids his age as he was home schooled with a different educational approach than mainstream - but he reads perfectly fine, comprehends, is probably the best speller out of my 5, his more into the arts and cooking than mathematics. He does have some SPD - but 3 of my other kids have that, and neices, and I had it so I don't believe it's stemming from that. It's a brave parent who can hand their baby over for this surgery, but there are serious risks including death, you can look up and watch the surgery here on RUclips... But it's not for the faint hearted. My approach in everything is acceptance - I lost half my pregnancies during pregnancy, had traumatic scary deliveries - I wasn't risking my baby to the surgery... I'm not sure what I would have done if he was seriously, severely disfigured.
Thank you so much for taking the time to reply. I really appreciate it! It’s a very though decision, my baby is 8 months. His pediatrician referred me to the neurologist when he was like 3 months but since I was keeping record of my other kids they also were in the 1% for the head circumference. So I didn’t take him, then another pediatrician referred me as well and I decided to take him. They told me that there was a big probability that he had it just by looking at his head then sent us for a CT scan.the results confirm their guess (they called to let me know) and we have an appointment to talk about it and the surgery.
@@wilmarydc it's scary either way you decide to go - there are big unknowns whichever way you go too, the specialists can't guarantee an outcome. My son was diagnosed at birth because he had very prominent suture lines. Being a mum, and having to make these huge life altering decisions for our kids is so terrifying = we need danger pay 😉
@@tuathadesidhe1530 Can I add you in facebook,? So that I can connect with you? My 4 month old baby boy also has a craniosynostosis. Thank you. Mine was Che Ramirez Magpantay. You can also add me as a friend thank you.
Hi.I am from India. My child has trignocephaly. He is 5months old. All his activities are normal. The reports of scans are normal. Still neurosurgeons recommend us for a surgery. We are ready for the surgery. Still, we need some more opinion. Could you pls share your opinion here.. Thank you -Abdul
Hi Abdul, Thank you for sharing with us. Often x-rays are not helpful in determining a proper diagnosis for craniosynostosis. That's wonderful that you are connected with a neurosurgeon! We would recommend that your neurosurgeon order a CT scan for your boy, so that both of you can see which areas of his skull are affected. You can also have the scan results sent to another specialist if you would like additional opinions. We explain a little more about this on Day 11: ruclips.net/video/o63LUI8F6Ow/видео.html
My child is diagnosed similar to ur child that is metopic craniosynostosis. I read ur comment now that is probably 1 year ago. It means ur child have done with surgery i want to know aftereffects of surgery. As i am planning for surgery plz rpl me
Hello sir. Iam from india , my boy 4yrs old. He skull is croniosynostosis, and doctor after CT scan he suggested for surgery. But some surrounding peoples said it surgery very denger . plz sir can you give the advices for the surgery and how many months to recover from the surgery. Plz sir give reply very soon
Hi I'm from Coimbatore my daugher 11 months old she had a same issue doctor's also suggested for surgery.. Now you have get idea please suggest me foe this issue
![I.N "HALLUCINATION" | [Stray Kids : SKZ-PLAYER]](http://i.ytimg.com/vi/n5B5q1Hwt_U/mqdefault.jpg)
'Let's use this finger.' LOL!!!!!
I haven't been able to comment on these much because I often watch my subs while I'm doing dishes, cooking, etc, but I've watched them all. Thanks for sharing.
Creating Essence, yeah, it's been a rough habit for her to break lol. Thanks for watching!
I am glad u two are bringing awarness to this. If your not comfortable answering I am just wondering why your beautiful daughter didn't have surgery if it was needed ? Did you guys not want surgery or did ur pediatrician not notice ? I'm a mom of 3 and I just wanna know if u didn't know ig theres certain things to look for . my youngest will be 2 in a week would i know already ? Praying for ur family
Our daughter was treated. She has had many surgeries to date, with more as she grows older. This was done in order to discuss what would happen if cranio was left untreated. While we were learning more and more when our daughter was young, we heard some stories about parents who thought the surgeries were not needed, that they were cosmetic. We wanted to dive into that in a way to shed some light on it.
As for your child, I would say that in most cases, a parents instinct is usually right. If you are worried that your child may have something wrong, bring it up the their doctor. MOST cranio is detected at birth or within the first few months. If it is a minor case, then there may be nothing that needs to be done. But, as I said, if your gut is telling you something is wrong... pester doctors until your gut no longer feels that way.
@@craniofamilyvlog1496 I appreciate you answering my question. You two are amazing parents. And this is defiantly an issue that should be discussed more. When I asked the pediatrician why they measure the babies head they said just to make sure everything is healthy and normal. This is my first time learning about this. Thank you.
My son had this and his 1st surgery was a fail at 10 mths old and the 2nd. At 5. Finally by the 3rd surgery at age 7. All was successful and no more surgeries needed. Though now at 28. He has major migraines often. He will not go to a Dr because he has a white coat syndrome and just does not like Drs or needles. Not sure why he still has so much pressure though.
Im 44 Ive had this all my life I get headaches i have a dent on my right hand side and I also have Trigeminal Neralga
I'm 30, my dent is on the left side.
I'm 48 mines on my Right side...
My son is 3 and they think they have found cranialsyntonosis on his MRI. The reason they did an MRI is because he’s been having seizures. Thank you for this video
It's unfair to speak negatively about parents who choose not to go ahead with surgery - I refused surgery for my now 16 year old, having the top of my baby's head cut off, chopped up/smashed and reput together like a 3D puzzle was the risk I wasn't going to take with his life, and health - we also have a bleeding disorder, so no, not the option I was taking.
May I ask how’s your son doing? Does he has pressure on his brain? Does he gets headaches?
I will have to make a decision about my baby as well.
@@wilmarydc I'm sorry you are having to make this huge scary decision - my son is doing pretty well, he has bilateral coronal craniosynostosis. He does get headaches, but I have severe migraines and he doesn't get them on that level, he does get nose bleeds - but I'm assuming this has more to do with our Von-Willie brands disease as his older brother and I used to get them a lot when we were younger too, he does get some sinus issues especially after swimming. He does have a bit of a slight bulge in the top of his skull - but this is unnoticeable unless you are purposefully feeling for it as he has very thick curly hair. He does have a large forehead - but his father, and his father etc all have big foreheads - it doesn't look out of place, I wonder if they all have it then? It certainly isn't hindering him on the girlfriend front.
I haven't had his eye pressure tested, but we might do that at his next appointment just to be safe.
On the academic front I can't tell you how he stacked up against other kids his age as he was home schooled with a different educational approach than mainstream - but he reads perfectly fine, comprehends, is probably the best speller out of my 5, his more into the arts and cooking than mathematics. He does have some SPD - but 3 of my other kids have that, and neices, and I had it so I don't believe it's stemming from that.
It's a brave parent who can hand their baby over for this surgery, but there are serious risks including death, you can look up and watch the surgery here on RUclips... But it's not for the faint hearted.
My approach in everything is acceptance - I lost half my pregnancies during pregnancy, had traumatic scary deliveries - I wasn't risking my baby to the surgery... I'm not sure what I would have done if he was seriously, severely disfigured.
Thank you so much for taking the time to reply. I really appreciate it!
It’s a very though decision, my baby is 8 months. His pediatrician referred me to the neurologist when he was like 3 months but since I was keeping record of my other kids they also were in the 1% for the head circumference. So I didn’t take him, then another pediatrician referred me as well and I decided to take him. They told me that there was a big probability that he had it just by looking at his head then sent us for a CT scan.the results confirm their guess (they called to let me know) and we have an appointment to talk about it and the surgery.
@@wilmarydc it's scary either way you decide to go - there are big unknowns whichever way you go too, the specialists can't guarantee an outcome.
My son was diagnosed at birth because he had very prominent suture lines.
Being a mum, and having to make these huge life altering decisions for our kids is so terrifying = we need danger pay 😉
@@tuathadesidhe1530 Can I add you in facebook,? So that I can connect with you? My 4 month old baby boy also has a craniosynostosis. Thank you. Mine was Che Ramirez Magpantay. You can also add me as a friend thank you.
I took this surgery 15 years ago when i was under 1 year old. I felt my head and i have a small dent on the back😅 What should I do?
idk but ay we twinnin
Hi.I am from India.
My child has trignocephaly. He is 5months old. All his activities are normal. The reports of scans are normal. Still neurosurgeons recommend us for a surgery. We are ready for the surgery. Still, we need some more opinion. Could you pls share your opinion here..
Thank you
-Abdul
Hi Abdul, Thank you for sharing with us. Often x-rays are not helpful in determining a proper diagnosis for craniosynostosis. That's wonderful that you are connected with a neurosurgeon! We would recommend that your neurosurgeon order a CT scan for your boy, so that both of you can see which areas of his skull are affected. You can also have the scan results sent to another specialist if you would like additional opinions. We explain a little more about this on Day 11: ruclips.net/video/o63LUI8F6Ow/видео.html
My child is diagnosed similar to ur child that is metopic craniosynostosis. I read ur comment now that is probably 1 year ago. It means ur child have done with surgery i want to know aftereffects of surgery. As i am planning for surgery plz rpl me
Hello sir iam from india. my boy 4yrs old
Hello sir. Iam from india , my boy 4yrs old. He skull is croniosynostosis, and doctor after CT scan he suggested for surgery. But some surrounding peoples said it surgery very denger . plz sir can you give the advices for the surgery and how many months to recover from the surgery. Plz sir give reply very soon
Hi I'm from Coimbatore my daugher 11 months old she had a same issue doctor's also suggested for surgery.. Now you have get idea please suggest me foe this issue
Hi sis how is your daughter now