I've been meaning to update my blog to where we are today with Finley. I'm going to add some pictures when I get a chance.
Its important for all would be helmeters to see and hear what has happened to Finley in the time after we stopped treatment. Remember that Finley was over 1 year old when we started. I was looking for reassurance that it would've made a difference to start so late.
I think that there has been a marked change for the better in his head shape as time has gone on. Whether that is because I'm getting used to it being the shape it is, or with his hair sytle it makes it look better I don't know. Its difficult to tell on a day to day basis. That's why pictures are important and I'll post them up soon. A friend who I don't often see said only last week, she was amazed at the improvement in his head shape which was encouraging.
My gut feel is that it was probably not effective to have had treatment. It was such a hard thing to decide to do and such a horrible thing to have to go through but, knowing what I know now, I would not have gone through with it. If we had caught it earlier when growth was more rapid we may have had a more successful conclusion but that was not what happened so we will never know.
It is my opinion that parents must consider the severity of the head shape before embarking on treatment which has been so controversial with the NHS advice.
Next time I pass Kingston I'm planning to pop in and hope to get some new measurements. It will be interesting for us but also useful for this blog.
Thanks to you all for your lovely comments. Good luck to anyone who reads this blog hoping to find some answers. I really hope that I've helped you in some small way.
Watch this space for more photos and when I get round to it, some updated measurements.
We are part of
29 weeks in helmet
It still looks bad with wet hair in my opinion
12 weeks in helmet
06.06.07
First day in hat
15 months, 6 weeks in new helmet
11.5 months
3 weeks before treatment
11.5 months
Side View
Top view - 5 months
Finley at 5 months
5 comments:
Thank you so much for sharing your story on-line. Our son also has a flat head. We felt/feel horrible guilt about doing this to him and we went to three different Peds trying to get a referral for a helmet and they all said that a) his flattening was considered mild/moderate and b) because his face is symmetrical he was not a candidate for referral to a plastic surgeon. We live in Canada so there are no private options for treatment. We waited until he was nearly a year old to see the other doctors, because we thought it would resolve itself with positioning, growing, age etc. Anyhow, I used your measurements to get a calculation about his percentage, which is the first time I have seen this and hi is about 88% which seems not to bad (mind you this is from tracing his head on a piece of paper and using a tape measure...not exactly scientific!)...but his head has a rather pronounced ridge on it. Anyhow, he is 16 months old tomorrow so it seems as though what we see is what we will get. After reading your story, I am somewhat glad that we didn't fly to the US to have him banded...as the cost would have have put us severely in debt and the result may not have been worth the cost (both $wise and emotionally!) Anyhow, your son is a hansom fellow and I keep thinking that when our son is 16 and getting his drivers license or 18 and graduating, his head measurements is the last thing we will be thinking about! All the best to you!
Thank you for sharing your story. I hope that you are well.
It is really interesting to hear a families story as we are starting a clinic using the STARband for treatment of plagiocephaly. We will beable to treat upto the age of 18 months so it was great to see the improvements that you gained with your orthosis.
Good Luck for the future.
Hi Sarah,
Thanks for sharing your journey - I was up late last night because I wanted to read it all. I think your son's head looks fine now, I wouldn't have noticed anything had I not been head obsessed and read your story.
My son is currently 10 months and has been in a helmet for 2 weeks. He has what the dr's / orthos here in Australia call plagio but I think it is a mix between plagio and brachy. His plagio number is 7mm and CI is 87%. A GP, pediatrician and the ortho all said it's mild, doesn't require a helmet and will round out on its own. I helmeted because I worried myself sick reading on the net and felt like if his head were to stay the same as it is now I wouldn't be happy I didn't do everything I could. I am plagued with guilt that I didn't know to do more earlier.
Anyway, your blog has given a different perspective, and it is summer here, and so far I am absolutely HATING the helmet. I can't put it on him alot of the time anyway because it is just too hot and makes him boiling. Now I have read about experiences where the helmet has made heads worse/faces asymmetrical/created new flat spots. I just don't know what the right thing to do is anymore, feels like I'm going out of my mind with worry and indecision. Having been through it, with these numbers would you do the helmet? Again thanks for sharing!
Hi Sarah,
Thank you for taking to time to build this detailed blog; it is really helfpful to other mothers like myself who are struggling to decide weither or not to band our children. I think your son has come a long way lookeing at his pics from 2010. If I saw him with outher kids I wouldn't single him out to be any different. It must have been very hard but you should feel good for what you did for him. I have a 9 MO old boy with brachy; at 7 MO his CI was 98.5, I didn't feel right about banding at the time but now 2 months latter I dont' see much visible improvement so we're going in for another measurement and will likely get the helmet. What I want to know from you is if you have any frontal pictures of Finley 9-12 MO old. My son has very wide head on the sides, he's got these bumps over his ears that make his face/head look squashed down. This bothers me a lot more than the flattness on the back. I want to compare Finley's pictures of that age to my son's to see if the helmet will actually treat the sides.
Best
R
Thank your for sharing your story!Can you tell us how things continued to progress? I have a 3 yeras old son like Finley at the same age. I would love to know what is the natural progression with time...Thanks a lot
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