Friday, 9 July 2010

A theory about why it happened

There has been some developments in my own health. I've been diagnosed with MS. I'm actually fine, all symptoms that I had preceding diagnosis have gone and I think I'm a bit in denial.

As a bit of a net nerd I've been researching it like hell. I discovered that MS patients usually have a vitamin D deficiency (Northern hemisphere countries like Scotland and Canada have a much higher prevelance of MS due to less availibilty to quality sunlight)

I discovered that I have a deficiency in Vitamin D and in my research on this I came across a website that showed the signs of Vitamin D deficiency in children and babies.

  • SOFT SKULL is a sign of deficiency. Also, rickets which is not relevant in Finley's case.
  • Growth issues in height more than weight. This is not relevant for Finley but he is not tall.
  • Late arrival of baby teeth is a sign of deficiency. Finley had his first tooth at fifteen and half months and his canines didn't appear til nearly 3.
  • Late walking (bone development). Finley didn't start walking until he was 14 months. (not too late but not early)
  • Increased infections especially respiratory. Finley had countless chest infections in his first two years. On one occasion he was hospitalised.

For me this is too much of a coincidence. I'm figuring that I was probably Vitamin D deficient when I was carrying him and passed the deficiency onto him. Pregnant mothers who are D deficient cannot supply Vitamin D to their unborn child.

I googled Vitamin D and plagiocephaly and found other mothers who have been told there children maybe Vitamin D deficient and their children have mishapen heads.

MS is not genetic but MS is more prelevant in families. What if their mother was Vit D deficient throughout all the pregnancies? Which would account for siblings being more at risk if one has MS.

I'm supplementing myself with a high dose. I'm hoping it's not too late for me to maybe see a continued remission. But for my son, I'm getting him tested - if he is deficient I'll get my other boy done too.

I would love to hear what you visitors think about my theory!!

Will post again when I get Finley's blood test results.

Monday, 12 October 2009

Pictures, 18 months on

Interesting, top and back look odd still but front and sides are great in my opinion. Like I say, seeing him day to day it's not something I notice. Although his cycle helmet is still an adults one as his head is as wide as mine!!

Sunday, 11 October 2009

18 months on

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.

Wednesday, 9 January 2008

Final Figures and Pictures

Finley had his final measurements on 3rd January.

His head had only grown 1mm in width and 1mm front to back since the last measurements in October. With such little growth I am so pleased we decided to stop when we did.

Finley's final severity percentage is 97% which for some would be where they would start. I was quite disappointed with these results but today the before and after pictures arrived in the post and we are now quite pleased with the results! I can see how much progress we have made. Finley has lost the point to his head and you can really see the difference.

I think the last picure above really shows how much his head has changed. Here are the before and after scan pictures:

Interestingly and unbeknown to LOC we stopped putting the helmet on Finley during the day from the end of July. I am pleased to see that it did not have any detrimental effect to the figures and his head has only grown out 1 mm in the last 6 weeks when he has been completely helmetless.

I am hoping that in about 6 months I can ask LOC to remeasure Finley's head to see what natural change is made. I would've found this useful and maybe anyone who comes across this blog may find it useful too.

So there you have it. Here is all the information you may need to see an example of the results of helmet treatment on an older baby. I hope some of you have and will find the journey diary useful when considering what to do with your own children.

Thursday, 6 December 2007

Deciding to stop

After our last review Finley had a series of illnesses including a chest infection with high temperature. I just couldn't face putting it on him when he was ill even when his temperature went back to normal. So we have stopped. We have a review on 3rd January to rescan for the final results so we will see whether the hand measurements were accurate and if there has been any change since we stopped.

I dont feel we achieved much of a result. I guess that's why some providers refuse to helmet older babies. The results are often not worth the money or time for the paying customer.

Will report back in January with final figures.

Merry Christmas to all Finley's blog readers!!

Friday, 19 October 2007

Decided to keep going

Well we had another review yesterday. According to the measurements there was a further 2mm at the back which now shows a percentage severity of 97.45%. I got the impression that Saeed thought we should stop but that it was our decision. I figure that if we've got room and we've paid our money we may as well get the most out of it. I think, compared to others, we've got our money's worth out of LOC but I am not sure we have the results!

I think we should continue until he outgrows the helmet.

In the waiting room at LOC Finley came across another little boy with the exact same design helmet. They came face to face and stared at each other in disbelief for a few seconds. Quite amusing.

Next review in 6 weeks. 29th November

Tuesday, 25 September 2007

Some pictures

Here are some pictures I took tonight while Finley was in the bath. Such a darling sweet thing. I'm so thankful he is a happy healthy boy after all we went through ante-nataley (for those of you who don't know, we were only given a 5% chance of having a normal baby after a very high nuchal fold measurement at 12 weeks) but I do think we have failed him head shape wise. I don't think its improved that much at all.

Excuse the snot - what a cherub!!