View Full Version : to stop or not
02-25-2012, 05:21 PM
Hi all, I'm new to this site so I hope I'm posting this correctly.
My little girl has metopic craniosynotosis/trigonocephaly. She is endoscopic operated in Nijmegen (the Netherlands) at June 23, 2011, when she was 12 weeks old. Now we are following the helmet therapy for the last 7,5 months.
We are at the point now, that she almost can stop wearing her helmed. According to our doctor, she wears her helmed long enough. I think it is strange that he did not spook about the progression, but only about time. Now I am making up my mind to stop or not.
I hope that you all can help me with the following:
I am interested in how long other kids worn there helmed and the result direct after and of course how they look after a couple of years.
Is it true that after the helmed therapy her head shape keeps on changing?
I hope that you all can give me some answers...
In advance, many thanks
02-25-2012, 06:13 PM
Welcome to CK....I'm a metopic Mom, but my daughter had a CVR at 10 months old and no helmet therapy. I hope that some endo Mom's will chime in soon.
02-25-2012, 08:38 PM
Hi and welcome. I'm a metopic mom and my son had the endoscopic procedure done last July. We're currently in helmet therapy, too. Our NS prefers that we are in the helmet for a year so we're a little over half way done. Every time we go in for a follow-up appt. he talks about how his head will continue to change, even over the next couple years. It is a slow process with the endoscopic procedure for sure!
02-25-2012, 10:36 PM
Hi :) my son had endo for metopic 4 days after your daughter. We are definitely in the helmet until his next NS appointment on April26th which would bring us to approximately 10 months in helmet therapy. Right now I am not fully satisfied with our results and fully intend to fight to keep the helmet on longer if necessary. I think the amount of time differs for each case and the amount of correction they have Received dictates the time spent in therapy. We were originally told 3-6 months... It's been almost 8.... Our NS said the absolute max is 18 months even though he doesn't find that length of time necessary. To be honest I could care less at this point about the length of time and will push to keep the helmet on.
I have talked with another helmet mama who has finished with therapy and she said that yes there was improvement post therapy yet the majority of the improvement was seen in the first few months.
Best of luck! I know how it feels when the dr says your done and you feel like your not. Keep fighting for her if you want to continue on with therapy. Xo
02-25-2012, 11:51 PM
we live an Germany. Our daughter had endoscopic surgery for bicoronal end of March 2011 and is still wearing her helmet.
I will tell you what we were told here:
Our NS told us to wear it until she is 18 months old. He is not willing to end the helmet therapy before that time because he told us that experience (referring here to Texas, Dr Jiminez) has shown that the results will be better if the helmet is worn until this age. Apparently changes happen after helmet therapy, but it was shown that those changes are better when the helmet is worn for such a long time. Also a loss of the correction effect has been found if the helmet is left off before 18 months.
I think, especially Metopic and Bicoronal children have the same problem concerning the pinching of the temples and what I call the no-eye-brow thing.
I have just the other day met another Metopic child who is in the helmet now for about the same duration as my daughter (i.e. 11 months) and suddenly the little boy has eyebrows coming forward nicely! And that only happened recently.
Our NS told us that that is typical, because the pinching is the last thing to go under helmet therapy and that we are to stay strong and wait until our child is 18 months old, just to be sure for better results.
Having said that I must say that so far I am personally quite happy with the result we have reached. We have four months to go. That is not much compared to a hopefully long life ahead.
02-27-2012, 10:51 AM
My son had the traditional CVR/FOA for metopic, however he was in a helmet for about 3 weeks due to positional plagio/brachy and bi-temporal narrowing and for a narrow/bossed forehead that was not fixed during surgery as it should have been. The doctors removed the helmet because his soft spots started bulging and they were concerned that the helmet was too restrictive for him. Later I found out that the defects left by the surgeon were simply too large for the helmet to work anyway...
Anywho, I just wanted to let you know that the ortho explained to me that the pinching and narrowing of the temporal areas were the hardest things to correct with a helmet. Not that it can't be done, but that it is difficult and can take quite some time before any improvement is seen in that area. I don't know if you are still seeing pinching, but just wanted to share that info.
As far as time in the helmet, I am surprised that the surgeon would base it on time spent and not progress. The time spent is completely dependent on how much the head grows during the time that the helmet is on. Every child is different, so there really is no way to know for sure how much time will be needed to see the progress you would like.
If you are not satisfied with the results to date, I would push to leave the helmet on longer.
02-27-2012, 06:42 PM
Welcome to CK! Not a metopic/endo mommy! But wanted to say we are here for you!
03-05-2012, 05:25 PM
Thank you all foryour welkom and for your answers! They were very helpful for me.
Mijoje, do you havean article from Dr Jiminez,Texas, referring to the wearing time?
Lauren, our girl isborn at april 1st, so they are almost of the same age.
First we were also told by our NS that she will have her helmet for about a year or so. So I was very surprised he would short her daily helmet wearing time.
And yes, she stillhave the pinching, but her eye bows are coming out now. They are now halfway! She is so much changing (and growing) at the moment that I see the different almost every morning.
We have our next appointment next week (Wednesday, 14) with the cranio team, she will be seen by a group of doctors including our NS. Then we will discuss her helmet again.
But I hope that we can continue with the helmet. For this moment it doesn't feel good to stop.
03-06-2012, 05:22 PM
For what it is worth, I was chatting with my Plastic Surgeon yesterday and he said that the metopic endoscopic treatment takes the longest for helmet therapy - so long that he personally refuses to do them. He said everything is just so slow in that area it takes forever for the head to fully reform, if it ever will.
I'm a lambdoid father, not a metopic, just relaying what I had said to me when we were talking about endoscopic treatment in general.
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