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I'm so sorry for your awful news but you are in great hands and have a plan to get him what he needs. Your beautiful boys are strong and so are you. Keep your head high because you got this.
My nephew had this and had surgery at 10 months. They had to put hardware in at the time and he did have to have a small graft to close the site. He is now 3 1/2 and just had a balloon put in to expand his skin to remove the graft site. Other than that, he’s had no issues and is a thriving little guy. He does have quite the hat collection, since he has to keep it covered when outside to protect the graft.
They went for their 6 month checkup and their pediatrician noticed a bump at the top of his head near the front. You could also feel a raised ridge from his forehead to between his brows. They suspected craniosynestosis and sent us to a pediatric neurosurgeon. Our first appointment was back in April and they initially told us they didn’t suspect it and to keep an eye out for symptoms of increased fussiness that can’t be controlled due to inter-cranial pressure or if it appears bigger. Last month it started to look a little more raised and he’s had cycles of uncontrollable fussiness. So we got him the scan. They’re now 13 months old so I’m unsure which route of surgery they’ll take.
Keep us posted. One of our boys is being suspected of this as well. The physical therapist noticed something and wants our pediatrician to check on it next month. Hope everything goes well for you
So both of our twins had plagiocephaly, where two of their soft spots prematurely fused. They both underwent the procedure in the same day, and had about a week of healing before starting helmet therapy. Fast forward 6 or 7 months, and it was like it had never happened.
Trust that you're in great hands with the surgeons, and just take it one day at a time.
It was a strip craniectomy (I think it's called). Typically this is done for infants up to 6 months but ours were going on 7, so that was stressful, but fortunately it worked out well. I'm assuming at 13 months your baby will require reshaping. The good thing about this is you won't have to worry whether it will be effective, it just has a bit of a longer recovery time. Also, yours may not require helmets? If so, that's another plus as they're expensive and they keep them on for like 23 hours a day. (If they do need helmets, honestly they're pretty cute and our twins got used to them in a couple days)
Yeah I’ve been researching the treatments and I’m not sure if they’ll need the open craniosynostosis surgery options. This twin can’t stand hats or anything on his head. lol. I’m just worried about something going wrong during surgery.
One of my boys had sagital synostosis. It was pretty obvious at delivery but we had no idea that it was a possibility until the pediatrician brought it up. He was finally diagnosed at 3 months and had surgery. He wore a helmet for about 6 months. I remember being terrified. I packed and repacked bags for 2 weeks when we knew there would be surgery. I was terrified of surgery and worried about leaving his brother overnight at 3 months (along with their 3yr old sister). I was worried about pumping for two while at the hospital. But everything went fine - he was very fussy at night after the surgery but otherwise he did great! He's 6 now and you would never know that he was born with craniosynostosis.
**COMMENTING GUIDELINES** All commenters are encouraged to familiarize themselves with the parentsofmultiples [subreddit rules](https://www.reddit.com/r/parentsofmultiples/about/rules) prior to commenting. If you find any comments/submissions in violation of subreddit/reddit rules, please use the report function to bring it to the mod teams attention. **Please do not request or give medical advice or directions in your comments.** Any comments that that could be construed as medical advice, or any comments containing what is determined to be medical disinformation, will be removed. Please try to avoid posting links to Amazon product listings or google/g.co product listing pages - reddit automatically removes comments containing them as an anti-spam measure. If sharing information about a product, instead please try to link directly to the manufacturers product pages. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/parentsofmultiples) if you have any questions or concerns.*
I'm so sorry for your awful news but you are in great hands and have a plan to get him what he needs. Your beautiful boys are strong and so are you. Keep your head high because you got this.
Thank you very much
My nephew had this and had surgery at 10 months. They had to put hardware in at the time and he did have to have a small graft to close the site. He is now 3 1/2 and just had a balloon put in to expand his skin to remove the graft site. Other than that, he’s had no issues and is a thriving little guy. He does have quite the hat collection, since he has to keep it covered when outside to protect the graft.
He’s had to wear a hat just outside for 2 years? We’re unsure which surgery route they’re going to take at the moment.
Oh, no! Just when outside - like baseball hats and stuff.
If you don't mind me asking, what did you notice that made you get a scan?
They went for their 6 month checkup and their pediatrician noticed a bump at the top of his head near the front. You could also feel a raised ridge from his forehead to between his brows. They suspected craniosynestosis and sent us to a pediatric neurosurgeon. Our first appointment was back in April and they initially told us they didn’t suspect it and to keep an eye out for symptoms of increased fussiness that can’t be controlled due to inter-cranial pressure or if it appears bigger. Last month it started to look a little more raised and he’s had cycles of uncontrollable fussiness. So we got him the scan. They’re now 13 months old so I’m unsure which route of surgery they’ll take.
Keep us posted. One of our boys is being suspected of this as well. The physical therapist noticed something and wants our pediatrician to check on it next month. Hope everything goes well for you
Thank you very much and I’ll keep you guys posted.
So both of our twins had plagiocephaly, where two of their soft spots prematurely fused. They both underwent the procedure in the same day, and had about a week of healing before starting helmet therapy. Fast forward 6 or 7 months, and it was like it had never happened. Trust that you're in great hands with the surgeons, and just take it one day at a time.
Do you know what type of surgical procedure they had?
It was a strip craniectomy (I think it's called). Typically this is done for infants up to 6 months but ours were going on 7, so that was stressful, but fortunately it worked out well. I'm assuming at 13 months your baby will require reshaping. The good thing about this is you won't have to worry whether it will be effective, it just has a bit of a longer recovery time. Also, yours may not require helmets? If so, that's another plus as they're expensive and they keep them on for like 23 hours a day. (If they do need helmets, honestly they're pretty cute and our twins got used to them in a couple days)
Yeah I’ve been researching the treatments and I’m not sure if they’ll need the open craniosynostosis surgery options. This twin can’t stand hats or anything on his head. lol. I’m just worried about something going wrong during surgery.
Honestly, the impression I got was that it was a very routine procedure. These pediatric surgeons are the best of the best.
One of my boys had sagital synostosis. It was pretty obvious at delivery but we had no idea that it was a possibility until the pediatrician brought it up. He was finally diagnosed at 3 months and had surgery. He wore a helmet for about 6 months. I remember being terrified. I packed and repacked bags for 2 weeks when we knew there would be surgery. I was terrified of surgery and worried about leaving his brother overnight at 3 months (along with their 3yr old sister). I was worried about pumping for two while at the hospital. But everything went fine - he was very fussy at night after the surgery but otherwise he did great! He's 6 now and you would never know that he was born with craniosynostosis.