Wednesday, 30 June 2010
29th July - Our trip to Glasgow for the helmet fitting
Yesterday Thomas had his second appointment at the Plagiocare clinic in Glasgow. We got the early morning ferry over to Stranraer and were picked up by our brilliant taxi service-my mum! It's just over 3 hours to drive up to the Bothwell clinic, with a quick picnic for lunch on route. Once at the clinic there was just time for a cup of tea and for Thomas to get his bottle. We were then taken in to be be seen by Sandie the Ossur clinician.
The helmet was made according to Thomas' first 3D scan with the expected improvement added in. He currently has an assymetry of 16mm and the helmet is designed for an improvement to 4mm based on the shape of his head. The picture of the mould shows what we are hoping to achieve by the end of all this!
Thomas was amazingly so so good getting the helmet on and bar putting his hands up to his head a few times at the start he seemed totally unfazed by it all. Just his usual trying to charm everyone with his smile! The helmet was trimmed around the edges and Sandie ran through the procedure for acclimating Thomas to wearing it, cleaning it etc. It was then a quick turnabout and back down the road for the evening ferry back to Belfast. I have to say Thomas was absolutely super, never a grumble or a cry from him all day!
Today-30th July Today Thomas has to wear the helmet for 1hr on, and then a break of 1hr and then back on for an hour while he's awake. Again he has been great at accepting it and it really doesn't seem to bother him. Saying that he is being a bit grumbly today but I do think it is just tiredness after yesterdays travelling. The only thing is with the helmet is he is very sweaty on his head when the helmet comes off. We were told to expect this and he is just to be dressed in minimum clothes. It is strange seeing him wearing the helmet but I am sure very soon we will get used to it...and the result at the end will all be worth it.
The helmet was made according to Thomas' first 3D scan with the expected improvement added in. He currently has an assymetry of 16mm and the helmet is designed for an improvement to 4mm based on the shape of his head. The picture of the mould shows what we are hoping to achieve by the end of all this!
Thomas was amazingly so so good getting the helmet on and bar putting his hands up to his head a few times at the start he seemed totally unfazed by it all. Just his usual trying to charm everyone with his smile! The helmet was trimmed around the edges and Sandie ran through the procedure for acclimating Thomas to wearing it, cleaning it etc. It was then a quick turnabout and back down the road for the evening ferry back to Belfast. I have to say Thomas was absolutely super, never a grumble or a cry from him all day!
Today-30th July Today Thomas has to wear the helmet for 1hr on, and then a break of 1hr and then back on for an hour while he's awake. Again he has been great at accepting it and it really doesn't seem to bother him. Saying that he is being a bit grumbly today but I do think it is just tiredness after yesterdays travelling. The only thing is with the helmet is he is very sweaty on his head when the helmet comes off. We were told to expect this and he is just to be dressed in minimum clothes. It is strange seeing him wearing the helmet but I am sure very soon we will get used to it...and the result at the end will all be worth it.
Thomas and Plagiocephaly
Our little son Thomas who is now 9 months old has a condition called plagiocephaly or flat head syndrome. This is there is partial flattening of the back of the head which gives a slightly distorted look to the head shape and which can cause misalignment of the ears and eyes.
When Thomas was born it was noticed that his head was tilted to the side and the midwife commented to me his face was assymetrical. This was attributed to a condition called torticollis, where there is a shortened muscle on one side of his neck. I think this arose as he was quite a long baby and when inside me he didn't appear to move much during the last stage of the pregnacy; he was probably stuck in one position. Initially he just had lateral flexion of the neck and then his head also started to rotate. He was quite grotchy and irritable as a tiny baby and I do think it was because he was in quite a lot of discomfort. From him being a week old he has been visiting a chiropractor who specialises in infants and she really has done wonders with him! The rotation has been totally sorted and there is only slight lateral flexion now. Thomas also sees a physiotherapist and has daily physio exercises to do, including stretches and lots of tummy time.
As a result of the torticollis Thomas has developed this condition plagiocephaly due to the way he has been lying. Despite repositioning him when he is sleeping and using a lilla kuddis pillow at night he has developed a very obvious flattening at the back of his head. When mentioned to the NHS their view seems to be that we will learn to live with it and his hair will cover the flattening. However any misalignment of the skull may contribute to jaw and dental problems and there could be negative psychological effects from teasing and bullying. There can also be problems fitting glasses and hats; which in our case may cause quite a problem if Thomas ever decided to follow his dad's footsteps in becoming a jockey! In severe cases surgery may even be required at a latter stage.
After seeing a case of plagiocephaly on the TV show Embarrassing Bodies, Kids last month, we were made aware of how getting a helmet fitted can greatly improve the flatness in young babies. I immediately did some research and found information about a number of companies that fit these helmets and also about this great charity headstart4babies. The results are amazing. As it happens there is nowhere in Ireland that fits these helmets and the nearest clinic to us is in Glasgow. We made the decision to take Thomas over to Glasgow for an initial assessment to see how bad his plagiocephaly actually was.
Last week we made the long journey over on the ferry to Glasgow for his assessment. Initial measurements were made of his head and then a camera took a 3D scan of his head. The result of this was that Thomas indeed does have severe plagiocephaly with an assymetry of 16mm. We have decided that we would really like to go ahead with getting a helmet fitted. However the problem is the helmet is not funded by the NHS and only provided privately costing £2000.
I am therefore trying to raise money to go towards this and for the charity headstart4babies. On the 2nd July I have entered Newtownards Half Marathon Walk and if you are still reading by this stage(!) I would be so grateful if you could maybe donate towards the fitting of the helmet for Thomas and to help heighten awareness of this condition.
When Thomas was born it was noticed that his head was tilted to the side and the midwife commented to me his face was assymetrical. This was attributed to a condition called torticollis, where there is a shortened muscle on one side of his neck. I think this arose as he was quite a long baby and when inside me he didn't appear to move much during the last stage of the pregnacy; he was probably stuck in one position. Initially he just had lateral flexion of the neck and then his head also started to rotate. He was quite grotchy and irritable as a tiny baby and I do think it was because he was in quite a lot of discomfort. From him being a week old he has been visiting a chiropractor who specialises in infants and she really has done wonders with him! The rotation has been totally sorted and there is only slight lateral flexion now. Thomas also sees a physiotherapist and has daily physio exercises to do, including stretches and lots of tummy time.
As a result of the torticollis Thomas has developed this condition plagiocephaly due to the way he has been lying. Despite repositioning him when he is sleeping and using a lilla kuddis pillow at night he has developed a very obvious flattening at the back of his head. When mentioned to the NHS their view seems to be that we will learn to live with it and his hair will cover the flattening. However any misalignment of the skull may contribute to jaw and dental problems and there could be negative psychological effects from teasing and bullying. There can also be problems fitting glasses and hats; which in our case may cause quite a problem if Thomas ever decided to follow his dad's footsteps in becoming a jockey! In severe cases surgery may even be required at a latter stage.
After seeing a case of plagiocephaly on the TV show Embarrassing Bodies, Kids last month, we were made aware of how getting a helmet fitted can greatly improve the flatness in young babies. I immediately did some research and found information about a number of companies that fit these helmets and also about this great charity headstart4babies. The results are amazing. As it happens there is nowhere in Ireland that fits these helmets and the nearest clinic to us is in Glasgow. We made the decision to take Thomas over to Glasgow for an initial assessment to see how bad his plagiocephaly actually was.
Last week we made the long journey over on the ferry to Glasgow for his assessment. Initial measurements were made of his head and then a camera took a 3D scan of his head. The result of this was that Thomas indeed does have severe plagiocephaly with an assymetry of 16mm. We have decided that we would really like to go ahead with getting a helmet fitted. However the problem is the helmet is not funded by the NHS and only provided privately costing £2000.
I am therefore trying to raise money to go towards this and for the charity headstart4babies. On the 2nd July I have entered Newtownards Half Marathon Walk and if you are still reading by this stage(!) I would be so grateful if you could maybe donate towards the fitting of the helmet for Thomas and to help heighten awareness of this condition.
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