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.
25 comments:
That is very interesting! Our ped really pushed the vitamin D on us and has said that the Canadian Ped Society will be changing their recommendation from 400 units per day for infants to 800 to 1000 because so many kids are still deficient. She also said that studies have shown that up to 10000 units per day is what kids in Australia can get because they get so much more sun...so clearly it can't hurt to increase it! Our son also has brachy (we didn't get a helmet...we couldn't find a Dr who would refer us for one, but that is a whole other story)and he was born in January and they Really pushed the Vit D. Now that you suggest this link, maybe that might explain why some kids get it and some don't. I have always wondered why if all kids are put on their backs to sleep now, why don't they all have flat heads? There must be something different in the 20% of kids that get it? Keep us posted on what you find!
And I am very sorry to hear about your MS. I hope that everything stays going well for you!
Thanks for this Kelly. In the UK there was not such suggestion of a Vitamin D supplement for me while I was pregnant or for either of my sons. Things have changed a bit but I still don't think supplements are suggested by mid-wives or health visitors over here.
Sarah
I too wonder why my sons brachy got so severe. It would not surprise me if his skull was softer than average. I breastfeed, still do and my son actually has indentions from where he laid on my arms while nursing as a baby I have now realized. He also is a late teether. We have the MS gene in my family. I did give him vitamin D sporadically but I thought it was just one of those things that really didn't matter and that my breast milk was probably good enough so I forgot about it. Maybe I should have given him more vitamins. His head grew a lot until 6 months but not so much after which is why I think the helmet treatment was not very effective in his case. Although we have seen change for the better it is just such a subtle change to me.
Sarah I am curious. As your son has grown what changes exactly have you seen to his head? Has it lengthened? Filled out anywhere? Does it appear less wide? I know the face continues to grow which makes the head seem smaller in proportion which probably helps with brachy kids. The head actually continues to grow very slowly til they are about 18 years old my sons cranial facial specialist told me. If I measure my head and his mine measures 10 cm larger than his so I know it keeps growing. Just curious as to what you have seen change and what I can expect for my son.
I am sorry about your MS. My uncle has that. It is not easy but he has also had it for quite some time. I have an autoimmune eye disease called Iritis that I battle with. How are your boys doing?
Petra
Any result from the blood work yet? I always wonder why some kids get it and other don't, when almost all kids are on their backs to sleep/in bouncy chairs and car seats. I just feel guilty alot that I should have done something differently...but I am sure there are factors at work that we don't know about.
I also forgot to mention that my dh is being tested for MS right now. He has had a number of nerve conduction tests, CT, MRI etc. and they haven't found anything unusual, but he has constant numbness and tingling in his arms and legs all the time. How was your MS diagnosed?
Petra,
From what I have researched breast fed babies are MORE likely to be deficient than bottle fed babies. Please google it because I think you should start supplementing your baby and putting him out in the sun without protection for a short time each day. Especially with MS in your family.
Finley's head has not really changed, it is still very flat at the back and cycle helmets have to be adult size to fit his width. Having more hair helps the look but the shape still remains as before.
Thanks for your post.
Sarah
Hi Kelly
I spoke to my dr about testing for D deficiency and she said she was reluctant to draw blood from a 4 year old. I understand this. She then went on to prescribe a multi-vitamin which I never went to get as there was no Vit D in it!! I have since found a liquid form Vit D supplement on the internet and I am now giving both my boys 250iu per day in their drinks. I will up this in the winter to 500iu.
As for my MS, I had pins and needles and numbness in my feet which rose rapidly up through to my pelvis over a period of 2 weeks. An MRI showed lesions on my spine and brain. I had had two previous but minor episodes and, with these taken into consideration, a diganosis was made. I have made some big lifestyle changes, mainly diet and exercise based but also including Vit D supplementation. I am expecting this to help with any future relapses. I am pretty much back to normal now. Has your DH had Vit D and B12 testing? B12 deficiency can sometimes cause the symptoms you are describing. Try googling B12 deficiency symptoms.
Good luck
Sarah
May I suggest that you look up the work of Professor Michael Hollick of Boston University School of Medicine who is considered perhaps the World expert on Vitamin D3.
May I suggest that you also look up the work of Dr. John Carnell of the VitaminDCouncil and also the website GrassrootsHealth which has been set up by various doctors and researchers who work with D3.
Here are some links - the first is an excellent overview of illnesses associated with a lack of Vitamin D and is given by Professor Hollick:
Vitamin D and Prevention of Chronic Diseases
http://www.youtube.com/watch?v=Cq1t9WqOD-0
http://www.vitamindcouncil.org/
http://www.vitamindhealth.org/
http://www.grassrootshealth.net/
There is some very interesting reading there and advice on what type of Vitamin D to take, doseage, etc.
As always, do your own research and consult your own Doctor for advice before undertaking any supplementation.
Bob,
Thanks so much for your input. I have come across and researched much of Dr Hollick's work. For myself, I have supplemented at 10,000iu from July after finding that I was deficient at 52nmol. Recently I have been retested and registered at 240nmol which I am very happy about. I continue to take 10,000 iu per day.
As for chldren, I don't find so much research about for them. I am now supplementing at 500iu but without proper testing I'm worried that this is hardly enough for them.
Have you found any website with advice on supplemental levels for children? Without knowing their readings its hard to know if I should be blasting them or not.
I was hoping with these supplements we would at least be cold virus free this winter but I have already had two colds and so have my kids.
Sarah
My son was born with brachy. Docs say it was caused from the way he laid in my stomach when I was pregnant with him. I dont have ms so its not caused from that. He will be getting his helmet soon so im curious to see the results.
This is actually just a general question for Sarah. I know you probably haven't been on here in awhile, so it may be a long shot that I hear back from you. I am just wondering how you are feeling about Finley's progress now that he's older. I have a son who just turned three, and I continue to struggle with the decision we made to not helmet. At the time, I truly thought his head would naturally correct much more than it actually has. I am drawn to your story because Jack's head looks so much like Finley's. Every spring I have a renewed sense of guilt about it because we cut his hair short for the summer. We were referred rather late to a specialist (he was 10 months old), and so we felt the helmet might not be useful, and no one could really tell us otherwise. Anyways, I think I am just looking for a bit of reassurance that this becomes less of an issue as our boys get older. Please email me if you have time. Thanks so much, and hope you are well.
Jenny
jenclay78@gmail.com
Dear Sarah,
I'm sorry to hear about your illness and I hope you are holding up well. I just wanted to thank you for your post because it led me to suspect rickets in my own son.
He had brachy and wore a helmet, but we started at 16 months so his head is not perfect now.
When he was at the age where they start to eat yoghurts and eggs he point blank refused it and this is a worry. He just won't eat anything that contains milk, not even a biscuit.
The craniofacial surgeon who prescibed the helmet assured me that many children who eat a wholely rounded diet have the same problem and it had nothing to do with nutrition.
Now, my son's legs at the age of 22 months are slightly bowed. I have noticed this for months. I take him to an osteopath for his brachy and she said not to worry, that he will probably grow out of it and that dairy is not necessary in children's diets.
His pediatrician prescribed him vitamin D just in case. We live in Spain so there is plenty of sun.
I am so worried that he might have a deficiency. Surely in Spain he couldn't have a vitamin D defiency? He is still being breastfed at almost two, in addition to this I give him vegetable milk enriched with calcium, and plenty of naturally calcium rich foods. But he's a really picky eater. I don't know if it's the heat or teething but he hardly eats anything these days, only milk, fruit and tiny bits of this and that.
I suppose the only thing that could put my mind at rest would be a blood test. It's such a worry!
Anyway, thanks again and keep us updated on how you and your family are!
Hi Maria
Very weird, I very rarely visit this blog now. And here I am 2 days after your post....
Interesting comments you make about Vit D. I'm more than ever convinced that this has had some bearing on the condition. I hear what you're saying about milk products and calcium intake but exposure to the sun is critical to improve Vitamin D levels. Indeed on the research I did, breast fed babies are MORE at risk of Vit D deficiency than bottle fed babies. Not many foods have high levels of Vit D in them: only sun dried tomatoes, wild fish, its all about sun exposure. Lack of vitamin D prevents calcium absorption from what I can gather. So even if you give your son loads of calcium rich foods, if he is unable to absorb - there could be an issue. Please do your own research!
Low Vitamin D levels are an issue today because everyone is paranoid about sun burn and skin cancer to the point where all of us and especially children are covered in sun block without any exposure to the suns rays at all. I agree, Spain should be better than UK but even so, I believe its important to allow half an hour or so of sun without any protection with as much skin exposed as possible (so that the Vit D receptors which are present all over our bodies are able) to absorb as much Vit D as possible in the summer months.
We have so little sun in the Uk that I am supplementing Finley and his brother through the winter months (and through our miserable summer so far!!) I'm also convinced that I am symptomless from MS based on my Vit D supplements.
Further reading - "The Vitamin D Revoltion" You see, I bet the rest of the world will catch on.. :)
Hi Jenny, I e mailed you separately but here's my reply for the benefit of others:
I picked up your comment on my blog. You are right - I dont visit very much these days!!
Its interesting what you say that you feel guilty about not helmeting because now I feel guilty that we did. That was such a special time with Finley when he was little and he had this ridiculous thing on his head for almost a half of his little life. It was a very traumatic and painful experience which I actually regret doing. We left it too late to make much of a difference.
We had his hair cut today and where we had all that trouble with the helmet in the beginning has left a patch of baldness on his head - not really noticeable to anyone but me but I saw it there today.
As for progress, I still see he has a flat back of head, he has to wear an adults cycle helmet to fit the width of his head but he doesnt look strange or abnormal in any way and anyone I tell that we went through this treatment is honestly amazed.
I think when they are very little the whole thing is accentuateted - just because of the disproportionateness of the head compared to the rest of the body if that makes sense. It seems much worse when they are little.
So in answer to your question, I dont think its improved much if I really inspect it but really, its only me who sees it. Everyone else, (including him) is oblivious!
My advice: Be thankful that you didnt put him through it and you saved yourself a shed load of cash and trauma in the process, accept that you are going to see the flatness but understand that you are the one who will be effected most by it and that him and everyone else around you will not give two hoots about it!
Hope that helps
Sarah x
Hello! Im portuguese and while googling and searching for answears to my baby brachy, I came across with your story: I also believe vitamin D is very important stuff in swollen cranius... My son is 11 months and has brachy. Nothing awful, but I took him to a specialist a couple of months ago, who told me he has positional brachy, told me to buy a special pillow, btu nothing else. Didint ask abou vitamin D (I was suposed to give him supplemente, but like other mum here, I thaught that it was one of those things, that it really didnt matter...) TODAY I believe: my mistake anda horrible fault, I going to doctor again to talk about this, to ask if my baby is with vitamin D carency. He has normal growth, walks, it is smart, only visible problem is head shape... thanks for info and good luck for your babies healthy development
Hi Sarah,
I can't believe I have come across this post... My daughter is 11.5 months and after a long road we have finally been to a company called starband in Kingston who scanned her head and she has brachycephaly with severity of 1.03 which I think is the same as 103%. We are really struggling with the decision as she is that much older and they have suggested that she will need to wear the helmet for 10-12 months. I am so worried that we put her through a year of wearing a helmet plus the cost for minimal difference? Do you have any advice at all that can help us - although you say you may not have done the treatment again looking back you did have some good improvement and I can see in your pictures a noticeable change. Any advice appreciated.
Many thanks
Haley
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Hey, just wanted to say thanks for your blog. My babe's head's a little flat and it worries me a bit, even though our pediatrician said not to worry. I'm pretty sure his head is brachy, not sure how severe, but after reading through your blog I think I'll just get over it. Your kid is super cute. You are right about no one knowing the difference. Just wanted to say thanks for putting this up here. There isn't a lot of info out there. This helps!
Hi Sarah,
Thanks for putting such a wonderful blog. Your kid is super cute and my little one (who is 14 months old now) has been suffering from Brachycephaly since he was 4 months old (and that's when we noticed it). Our ped told us not to worry but still we are concerned. I do hope your son is doing perfectly fine now. Have you noticed any other issue as a result of the head condition. I would like to contact you via email or call as I want to confirm and understand a few things. Will you be able to mail me at
reach[dot]reetika[at]gmail[dot]com
Appreciate your help.
Hi Sarah,
Thank you for sharing your story! You're son is adorable :) I was hoping that we might be able to speak off line as I had some specific questions. Our son is 16 mo and we're just not sure if it's worth treating he has a 6mm asymmetry. I can be reached at v_enus024 at yahoo dot com. Thanks!
I have no idea if you're still connected to this site. I just found it. My daughter had severe plagio and brachy from early on. We first asked the doctor about it at her 2 month appointment, and, of course, she gave us the brush off. At 3 months, I mentioned that we were still having trouble nursing and that the lactation consultant had told us the baby didn't have proper range of motion in her neck. The pediatrician begrudingly referred our daughter to physical therapy. She started physical therapy at 4 months. The PT noticed the flattening right away. I told her I was a little worried about it too but that the doctor said it would get better on it's own. The PT told us about repositioning and encouraged us to use a floor seat as much as possible to get her head off the ground. Two weeks later, she told us she thought our daughter's condition was worse than most she had seen and recommended we look into helmeting. I told her the pediatrician was not supportive. She wrote a note to the pediatrician, and the pediatrician finally agreed to put in a referral for an orthodic helmet. Our daughter had her consult at 5.5 months. We don't know the CI at the start of treatment because our orthodist said he could not treat both the plagio and brachy at the same time and said the plagio would be more responsive to helmeting, so that's what he would treat. The asymmetry at the beginning of treatment was 19mm, which put her in the severe category. Our daughter got her first helmet at 5.75 months. She wore it religiously 23+ hours per day from the second day onward with virtually no problems whatsoever. The first month, we saw significant improvement, but from 6-11 months, her head grew very little, and reduction of the asymmetric was less robust than we had hoped. At 10 months, the orthodist said there would be no more improvement and recommended ending helmet therapy.
Around this time we switched pediatricians. Concerned about the lack of skull growth and across-the-board developmental delays, the new pediatrician sent our daughter in to be evaluated for cranosynistosis. The neurologist at the craniofacial clinic confirmed that our daughter had plagiocephaly, not craniosynostosis. She thought a second opinion from a different orthodist would be worthwhile, so, at 11 months, she wrote another helmet presciption for our daughter. The second orhodist said the first helmet wasn't fitting properly (we had wondered why it was so lose all along). She said she was willing to try continued helmeting but couldn't guarantee we would see any more improvement. She did say she would treat both the plagiocephaly and brachycephaly at the same time. Our daughter got her second helmet at 11.5 months. Her asymmetry was 12 (down from 19 at 5 months) and her CI was 98.6%. Progress was slow but steady from 11.5 months - 14 months. At 14.5 months, the orthodist said she normally recommends ending treatment because the fontanelles usually close at this point, but because she had grown 3mm in back in the previous two weeks, she wanted to keep going to see if any more improvement could be made. We enthusiastically agreed. From 11.5 months - 14.5 months, her head grew 1 cm in diameter. Her asymmetry was down to 6mm and her CI was 92%. We were thrilled with the progress. At her 15.5 month appointment today, there was no change. The orthodist says the fontanelle has probably closed and that there will be no more progress. To be honest, the anterior fontanelle has felt hard for a long time to me. There is still a large depression in her skull where the fontanelle should be, but it does not feel soft. I can't tell if it is fully hardened or not. Since baby girl tolerates the helmet so well, and it still fits, we decided to try for one more month. The orthodist said that she will not continue to treat her if there is still no progress next month. This makes me kind of sad. Although her numbers are significantly better, and her head DOES look more rounded than when we started helmet #2, I really really want her to get below 90%..... Just a little bit more!
In the many years since you originally posted this, did you see any additional improvement in the brachycephaly? Everyone wonders what happens to kids with flat heads as they get older. An update would be really fantastic. I'm still trying to figure out whether or not heads can round out at all once the fontanelles are closed, or is this it?
Thank you for this blog. It's not easy to find stories about kids who have helmets after 1 year. I think your son's head did improve noticeably based on the pictures, when he had the helmet on, but, it's impossible to know whether or not the same results would have been achieved without the helmet. In our case, our daughter likes the helmet, and insurance paid for both of them. There's been very little downside to her having it, so I'm definitely glad we decided to get a new helmet at 11 months. My big regrets are that we didn't start even just a few weeks earlier, and I wish we had shopped around for a better orthodist in the beginning. I can't help but wonder if a different orthodist would have done a better job in the first few months. Again, it's impossible to know. At this point, I am trying to prepare myself for the end of treatment. After 11 months, I think getting the helmet off will be a bigger adjustment for us than it was when she started wearing it. I just hope that there's some chance that she could continue to round out without the helmet as she gets older. I just really really wish I knew if there was some possibility of improvement after the fontanelle is closed.
Hi Sarah, just want to say thank you for sharing your story with us. My son also has severe brachy. Their heads might never be perfect, and life is never perfect. Your blog makes me feel that I am not alone - and you are not alone either : ) hope all goes well with your beautiful boy Finley.
Hi Sarah, just want to say thank you for sharing your story with us. My son also has severe brachy. Their heads might never be perfect, and life is never perfect. Your blog makes me feel that I am not alone - and you are not alone either : ) hope all goes well with your beautiful boy Finley.
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