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Danielle
05-11-2009, 03:54 AM
Is there any information out there on the causes of craniosynotosis???
I'm also concerned with the developmental delay that could be evident in metopic babies. In particular gross motor skills. My 13 mth old is not crawling or even standing up yet.
Should i be concerned??


Regards,
Danielle

melsch
05-11-2009, 10:30 AM
I think that's the 64 million dollar question!! :-) There are many cases that are believed to be syndromatic or genetic, but so many others that just don't have a reasonable explanation. Many babies were breach, others not. Unfortunately, it's seems to be a very big unknown for many of us!

Jenny
05-11-2009, 12:12 PM
I think that's the 64 million dollar question!! :-) There are many cases that are believed to be syndromatic or genetic, but so many others that just don't have a reasonable explanation. Many babies were breach, others not. Unfortunately, it's seems to be a very big unknown for many of us!


:yeahthat

also a lot of cases are "genetic flukes". sometimes it's just something in the mapping of the DNA. But like Mel said, no one really knows. I know we as mums try to think of all the things we had done while we were pregnant to come up with an explanation, like it was something we did. That is not the case. It just happens!

Janet
05-11-2009, 12:31 PM
The medical explanation I got was "it's just something that happens" that never sat right with me.

boxergirldee
05-14-2009, 12:39 AM
Oh, Janet. That wouldn't sit well with me either. UGH.

Rhonda O
05-15-2009, 11:03 PM
I was told that the doctors don't know what causes it other than when it is genetic.

NorthernLight
05-16-2009, 05:33 AM
Being a mother of two metopic boys I must say I am glad we are having genetic testing done sometime soon. In our case it seems like metopic ridges and pointy foreheads have been present in at least two or three generations on the boys father side. I personally have a hard time believing that moulding in uterus can lead to craniosynostosis. We were told that Sverres metopic suture probably closed sometime during the first months of pregnancy. I really dont think the conditions were tight that early on.

Zara's mum
05-16-2009, 06:31 AM
I too was told that it was "one of those things" nothing I did wrong. There can be a genetic reason, but Zara's isn't so that's what they put it down to . i however, am convinced, and wil always reckon it is because she was engaged right down in my pelvis weeks before birth, i had to crawl to the loo in the night i could hardly walk during the day.... then went into early labour 5 weeks early, which stopped with contractions 4 mins apart, held on to her for another 2 1/2 weeks, and she then arrived 2 1/2 weeks early without one single push!!! :giggle

Katie
05-16-2009, 08:48 PM
I was told the same too. It can be genetic, likned to family history, or a "fluke" or "just one of thise things". I think because it's only in recent years that cranio has become more known, there hasn't been enough research done to figure it out, or maybe it's just not possible to figure out. Everything I've read says it's not something the mom has done, they haven't been able to put an environmental link to it.

Tawnia
05-19-2009, 03:22 PM
Azia's dr thinks she could possibly have a syndrome not known yet as she had 3 midline birth defects and he thinks it can't be a coincidence but doesn't match any current syndromes - she was tongue tied, had a hole in her heart and metopic cranio

Stacey
07-01-2009, 03:59 AM
My son is currently being tested for sathre chotzen sydrome so we do not know yet whether he is syndromatic or whether it was an enviromental factor but i can say i noticed a lot less fetal movement during my pregnancy than with my previous pregnancy, he was 8lb 5oz and I am only 5ft 1 and his left ear rim looked like it was turned inside out ( he had left coronal synostosis) this totally corrected itself within days of his birth, all this leads me to believe that he may have just been a little cramped and this may have caused his cranio, but as I said we are awaiting test results so who knows!

donnamilliezac
07-01-2009, 04:29 AM
I truly believe in my case anyway it was because Zac was somehow squashed in the womb, i am only 5ft 1 and he weighed 9lb 11oz. halfway through pregnancy i was admitted to hospital with a severe pain in my side - they never works out what it was but i think it may have been zac stuck under my ribs or something.

AllyCat
07-01-2009, 09:14 PM
We were also told there was no explanation since Rohan's is not syndromic. It can be induced in animal models (studies) and since Rohan sat on my right sciatic nerve the whole pregnancy, I still think that's what did it. There were days I couldn't walk it hurt so badly and I am not a wimp with pain. I had false labor for 4 weeks before he arrived 4 days before his due date. (my story sounds like Zara's mum!).

Avery's Mom
07-03-2009, 01:06 PM
Azia's dr thinks she could possibly have a syndrome not known yet as she had 3 midline birth defects and he thinks it can't be a coincidence but doesn't match any current syndromes - she was tongue tied, had a hole in her heart and metopic cranio

Avery has three as well, Trisomy 14Q Chromosome Abnormality, Complete bilateral cleft lip and palate and Right Lambdoid cranio, none of which there is a history of.

StephanieBeth
07-09-2009, 06:30 PM
Hi,
I just met the plastic surgeon today and asked him that same question! He said that the newest theory is that it may be caused by the Folic Acid and Vitamin B that we take during pregnancy to prevent spina bifida.
He said that we are seeing less spina bifida but more and more metopic synostosis!!
Of course, this is only a theory and the benefits of Folic Acid (prevent spinabifida) outweigh the fear of Cranio since at least Cranio can be treated with surgery...

Finally, something that makes some sense to me!!

Steph

Terry17
07-09-2009, 06:38 PM
The folic acid theory is interesting. My daughter, like you all, tried to do everything by the book and took the vitamins with folic acid etc. I have often wondered why I had never heard of Cranio. I am 51 years old and worked in a hospital for 15 years and had never of Cranio. As I research this condition and from what the PNS told me Cranio is actually more prevalent than one would imagine compared to years ago (unless it just went undiagnosed). If there are any other explanations that other folks have gotten I would be very interested. We too, were told it's is just a fluke 80-90% of the time.

marisajo
07-10-2009, 05:47 AM
The part that I find very interesting is that the prevalence of metopics especially is on the rise. It a phenomenon we've noticed on the boards over the last several years, and now it's starting to show up in the research. The folic acid info is interesting...though I couldn't find any studies listed on pubmed about it. I just can't get over how much more info there is now than 5 years ago when we started down this path. I hope that trend continues.

Zara's mum
07-10-2009, 09:17 AM
Wow, this is all very interesting, esp as we are all encouraged to take folic acid, I guess it makes sense as it helps to close the spine, it could in

help to close sutures in the skull?? must read more now... I found this link..

http://cpcj.allenpress.com/cpcjonline/?request=get-document&doi=10.1597%2F04-031.1

All very interesting, I really hope that it can be identified how it is caused, and more importantly be able to prevent it happening....

AddiesGramma
07-10-2009, 09:26 PM
wow that is intertesting and the way you pointed out Chloe it is used to help close the spine so maybe ....hmmmmmmmm

AddiesGramma
07-10-2009, 09:37 PM
found this info


One paper raises the possibility that the use of excessively high doses of folic acid by women planning to become pregnant may increase the risk of positional plagiocephaly, although the results are inconclusive. Another report shows that, in a small number of children, some forms of craniosynostosis may at first be mistakenly diagnosed as plagiocephaly. http://www.health.am/ab/more/update-on-craniosynostosis/

EjaysMom
08-26-2009, 02:10 PM
The Folic Acid theory is very interesting...
One more thing to Google--- I actually think the research is therapeutic.

Avery's Mom
08-26-2009, 02:42 PM
The Folic Acid theory is very interesting...
One more thing to Google--- I actually think the research is therapeutic.

It can become that way......it made me feel less apprehensive about the whole thing!

Mrslala
08-26-2009, 03:38 PM
Azia's dr thinks she could possibly have a syndrome not known yet as she had 3 midline birth defects and he thinks it can't be a coincidence but doesn't match any current syndromes - she was tongue tied, had a hole in her heart and metopic cranio

I think the same thing about Lennon. She has metopic cranio, a bicuspid aortic valve, BUT...she also has a saccral dimple which is a very mind form of spina biffida. Well, it's more like spina biffida that almost happened, but didn't end up being bad enough to actually count...if tha makes any sense.

I took a TON of folic acid when I was pregnant with the girls. They had me on 800mg (NOT 800 micrograms, which is the normal dose).

Interesting.

Ger
08-26-2009, 04:44 PM
Just read this thread and it is interesting, I took the vitamins that you buy which contain folic acid, but I remember thinking that I probably didnt need them because I eat quite well (lots of dark green veg and cereal) so I may have overdosed.

You never know

Geraldine

sharontomos
08-26-2009, 05:31 PM
I was told that with non syndromic synostosis there is no genetic cause. It is just something that happens usually when there is not enough room for the baby to move freely in the womb i.e. when the baby is stuck in an awkward position, has very little amniotic fluid or is one of twins or triplets. I was also told by the nurse at the hospital that there tends to be a higher rate of synostosis with IVF babies.

Folic Acid theory is interesting, though

Nezzy
08-26-2009, 06:35 PM
Nicholas has a saccral dimple too! There has to be a connection. I also took alot of folic acid.

Janet
08-26-2009, 07:35 PM
Fiona was metopic and has a saccral dimple, my son was born with a wormian bone...I'm sure it's genetics in our case.
I took tons of folic acid with both of my babies.

Janet
08-26-2009, 07:42 PM
I found this:
http://www.health.am/ab/more/update-on-craniosynostosis/

Mama Musica
08-26-2009, 08:20 PM
Max also has a sacral dimple. Very interesting. He also has a pair of dimples in his shoulders, elbows and hands. We did a round of genetic testing, but everything they screened for came back normal. I'm not convinced that he doesn't have a small duplication or deletion somewhere- there's just too many things going on with him for it to be a big coincidence. But, he's developing normally with the exception of the cranio issues, so we're not going to pursue it any further.

AllyCat
08-26-2009, 09:29 PM
Just read this thread and it is interesting, I took the vitamins that you buy which contain folic acid, but I remember thinking that I probably didnt need them because I eat quite well (lots of dark green veg and cereal) so I may have overdosed.

You never know

Geraldine

I did that too! I am a vegetarian and eat lots of dark leafy greens and have cereal for snacks. Then took my PNV plus a folic supplement. Wondering if I overdid it. When I worked in a food/nutrition testing lab, there were maximum levels of folic acid that were considered safe in food by the FDA, and the spread was not big. It would be easy to "overdose" based on their standards, but I don't remember anymore what the range is.

jessef
08-26-2009, 09:38 PM
Addison too has a sacral dimple and a dimple on his ear lobe too. I am not sure what it is called but the pediatrician said it was ok. This is very interesting. I am going to the geneticist next week and will make sure I bring all of this up. Thanks for posting!

momof2withcranio
08-27-2009, 12:22 AM
Interesting. When i was pregnant with Kellie my youngest daughter i lost all my amniotic fluid. she was sitting low and was early. she only weighted 5lb and her head and chest were only 12 in. she was 17 in long. she was tiny. I had to put her in doll clothes b/c preemie clothes were to big on her. I admit i was bad about taking my floic acid with all my prenancys but my first. My first i did everything by the book. mind you neither of my girls have cranio of any kind. my boys do. I had a siatic (sp) nerve with both boys. It was a killer. seany was tiny and late. and jacob was big and late. Sean was 6lb 4 oz. and jacob was 8.5 lbs. Like i said i was horrible when it came to taking folic acid with them. mainly cause it made me sick. But i have heard the folic acid thing before. unfortunately for me that doesnt fit. they did try telling me it was environmental. maybe something in the water (we had a well at the time) but idk. neuro said it was a fluke and that i shouldnt have to worry about (before i had sean) this happening again. then i went for a follow up with jacob and asked about sean (still in utero) having it. She as well as 3 other drs said that i would win the lottery or be struck by lightening before sean could have it. Guess what NEITHER happen. I was then informed that any child i had after this woudl guaranteed to have it. Needless to say i am not having anymore children.

Lukeysmommy
08-27-2009, 12:32 AM
With all these posts mentioning the sacral dimple, I had to look it up online. Sure enough, Lukas has it!!! I have always noticed & wondered about it but NO doctor has ever said anything to me or used the name sacral dimple. Do I need to worry about this, too? Sorry to get off topic but I just read they can indicate spina bifida so now I'm freaking out!

Zara's mum
08-27-2009, 07:28 AM
environmental. maybe something in the water (we had a well at the time) .

How strange.... Zara is my only cranio child, and, since we've moved around a lot, she is the only one i have been pregnant with in our own house we have now... and we have our own well.... 'm definately going to look into that... also, interestingly enough, my eldest son Aaron, has a sacral dimple but no cranio!!

Mrslala
08-27-2009, 02:10 PM
With all these posts mentioning the sacral dimple, I had to look it up online. Sure enough, Lukas has it!!! I have always noticed & wondered about it but NO doctor has ever said anything to me or used the name sacral dimple. Do I need to worry about this, too? Sorry to get off topic but I just read they can indicate spina bifida so now I'm freaking out!

It's something that you should have looked into, but don't freak! Unless it is leaking spinal fluid or has a huge tuft of hair growing out of it (my girls did at birth and for months after) then it's likely "closed" and won't be an issue. Generally the worst that comes of it are back aches when they are old, IF anything at all.

Your ped should order an ultrasound of the area just to make sure that everything is closed off. Try not to panic, 99% of the time it's just fine.

Very interesting that so many of our kids have the dimple! It must be related....

Although Lennon WAS a twin and did have low amniotic fluid as well. Dr Fearon mentioned that he felt that was why she has it...but did I mention that I have found a ridge on her sister's forehead now? She has some pinching, but her forehead over all is very broad so I'm not even going to go there, lol. Makes me worry about the one I have on board though. If this one has cranio I'm getting fixed. =(

Lukeysmommy
08-28-2009, 01:56 AM
thanks for the reassurance - we will be going for an 18mo checkup soon and I will definitely get this checked out!

Another term I've seen mentioned here that I had to look up was clinodactyly. Lukas also has this (crooked pinky fingers) as does my hubby. We are actually very interested in looking at some of dh's baby pictures to see if we can spot a ridge. He does have a fairly narrow forehead, the sacral dimple and VERY crooked pinky fingers (one of his 3 brothers also has the clinodactly and sacral dimple but quite a broad forehead). Lukas is the spitting image of his dad so it seems impossible there is no genetic link involved. Does anyone else's kiddos with metopic ridges have clinodactly? I'm sure I've read someone on here does.

Alison
08-28-2009, 04:17 AM
all this is very interesting. I dont know the conditions of my birth, will ask mum tonight. Mum was told my cranio was a fluke when i was first diagnosed, but i have since found out i wasnt tested for a lot of the syndromes that have been connected to cranio, so, when i see my dr in January i will be asking if i can be tested for these syndromes.
My mum and i also beleive that my dad may have had a slight form of cranio, because his face is assymetric, and i look a LOT like him, in the sence that his eyes are unlevel and crooked like mine, as well as the ears. I also think he has pinching as well. But i havent seen him in about 2 years now so i cant really ask him about his side of the family.

NorthernLight
08-28-2009, 05:06 AM
I was then informed that any child i had after this woudl guaranteed to have it. Needless to say i am not having anymore children.

I also have two boys with different degrees of metopic cranio and we have a referral to see a geneticist. I have heard that in genetic cases of cranio you have a 50% chance of passing the gene on to your child. I donīt understand how they can guarantee you that a new baby would have cranio.

NorthernLight
08-28-2009, 05:16 AM
thanks for the reassurance - we will be going for an 18mo checkup soon and I will definitely get this checked out!

Another term I've seen mentioned here that I had to look up was clinodactyly. Lukas also has this (crooked pinky fingers) as does my hubby. We are actually very interested in looking at some of dh's baby pictures to see if we can spot a ridge. He does have a fairly narrow forehead, the sacral dimple and VERY crooked pinky fingers (one of his 3 brothers also has the clinodactly and sacral dimple but quite a broad forehead). Lukas is the spitting image of his dad so it seems impossible there is no genetic link involved. Does anyone else's kiddos with metopic ridges have clinodactly? I'm sure I've read someone on here does.

My oldest son who also has a metopic ridge has webbing of the first joint between his second and third toe. I think that webbing of toes is a common trait in Jackson- Weiss syndrome. I am not sure about the clinodactyly though.

mv3kids
08-28-2009, 07:16 AM
Interesting to read that there are so many craniokids with sacral dimples! My (non-cranio) daughter has a deep one with some hair growing out of it. Stijn has 4 superficial sacral dimples alligned in a T-shape.
Our children also have a number of curious 'things'. I'm convinced there must be some kind of underlying genetic cause even though nothing was found in DNA tests.
My daughter only has an obvious sacral dimple, but our oldest son (no cranio but he has a massive forehead) has clinodactyly, unilateral partial syndactyly of the 2nd and 3rd toe, café au lait-like spots, an epicanthal fold and a small haemangioma.
Stijn has metopic cranio, he's lip-tied (frenulum of the upper jaw is attached between his teeth) and has 4 sacral dimples. Besides he developed two café au lait-like spots and also has clinodactyly.

Avery's Mom
08-28-2009, 08:32 AM
Avery also has the Sacral dimple.....his GI doc says it is okay and nothing we need to have 'repaired' although his is pretty deep.

Nezzy
08-28-2009, 10:07 AM
Either saccral dimples are VERY common or there is a link. When I see Dr. Fearon in a few weeks (OMG!!!!!!!:scared2) I am going to ask him.

Avery's Mom
08-28-2009, 11:39 AM
Either saccral dimples are VERY common or there is a link. When I see Dr. Fearon in a few weeks (OMG!!!!!!!:scared2) I am going to ask him.

please do...I would be interested to see what he thinks. I am going to ask our doc too.

Nezzy
08-28-2009, 12:38 PM
I had asked the U of M docs and they scoffed at me for even asking. They said there is no connection and they are really common. But I am going to see what Dr. Fearon says. I'll let everyone know!

Shar
08-28-2009, 01:26 PM
6 kids and no saccral dimples in the house. :dunno I am curious to see what one looks like!

My 9 yo ds has "midget digets" where on both his feet his second toe is almost as short as his pinky toe. And My 6 yo dd has one foot that has a short second toe.

The H was born with what looks like a chicken pox scar on her cheek. It's in front of her ear but about an inch forward. I can find NOTHING online that resembles it. Every dr that's seen her says "Hmmm, was she born with this? We'll keep an eye on it." UGH! Anyone have anything similar???????

Mama Musica
08-28-2009, 02:25 PM
I'm gonna start an (extemely unscientific) poll. I'm really curious!

Amy K
08-28-2009, 02:44 PM
Just my opinion based on my dealings with Dr. Fearon, but I don't think he'll find any connection whatsoever between single suture cranio and sacral dimples. But it never hurts to ask him, and he'll always be gracious in his response.

Sharla, is that like an ear pit?? Can you get a good pic of it?

Camden's got several "anomalies"...one being his hands split apart between the index finger and ring finger...I can't find anything about it online other than it relating to dwarfism...so who knows?!
In utero he had a choroid plexus cyst in his brain...this can be perfectly normal and it disappeared on it's own, but of course I've always wondered how many other cranio babies may have had one.
He also has a small port wine stain at the top center of his forehead, which can be associated with some things. No doctor has ever said anything about it!
He had bilateral inguinal hernias, has a buried penis, small ear canal in one ear at birth, and developmental issues (he's just been diagnosed with global apraxia).

So, all of it related??? Or just many flukes....??? We'll probably never know!

Janet
08-28-2009, 03:07 PM
Fiona has the dimple, the eye folds, she is crazy double jointed....and overall adorable.

Mrslala
08-28-2009, 07:09 PM
Fiona has the dimple, the eye folds, she is crazy double jointed....and overall adorable.

What are the "eye folds"?

Janet
08-28-2009, 07:16 PM
What are the "eye folds"?



It's called epicanthal folds (http://en.wikipedia.org/wiki/Epicanthic_fold)...it's an extra fold in the eyes...here is a close up of Fiona's eyes:
http://i149.photobucket.com/albums/s76/JanetM73/IMG_4709b.jpg

Some children are just born with them, they go away once the bridge of the nose grows.

Mrslala
08-28-2009, 11:58 PM
Ahhh, ok...I can see it now.

Look at those beautiful eyes! She's too cute.

AddiesGramma
09-07-2009, 02:03 PM
she's so cute

AllyCat
09-07-2009, 03:56 PM
Either saccral dimples are VERY common or there is a link. When I see Dr. Fearon in a few weeks (OMG!!!!!!!:scared2) I am going to ask him.

Without reading further posts, I will comment that in my assessments of all newborns, we look for sacral dimples as well as any sign of spina bifida. We RARELY see them. They are NOT common. I think I've seen 3 in as many years.

No sacral dimple for either of our boys. Matthew was born with a heart arrhythmia that he is outgrowing (thank God). Rohan looked to have a little hypospadias (urethra not midline on penis), but that is going midline as he gets older so there are no worries with peds.

Zara's mum
09-08-2009, 08:34 AM
:omg..... you know these sacral dimples? well, Aaron actually has 2, not to be tmi, but, you can see his clearly and there is like a "Y" at the top of the crack. Also, I didn't think Zara had one, but if you ok... here is tmi again :giggle pull apart her little cheeks a little, she also has a sacral dimple..... should I get them both checked out????

Oh, and Aaron has the eye folds- I wonder could all this be genetic????

Avery's Mom
09-08-2009, 02:17 PM
Without reading further posts, I will comment that in my assessments of all newborns, we look for sacral dimples as well as any sign of spina bifida. We RARELY see them. They are NOT common. I think I've seen 3 in as many years.

No sacral dimple for either of our boys. Matthew was born with a heart arrhythmia that he is outgrowing (thank God). Rohan looked to have a little hypospadias (urethra not midline on penis), but that is going midline as he gets older so there are no worries with peds.

Avery has both a saccral dimple and hypospadias.....hmmmmm

Nezzy
09-09-2009, 07:01 PM
Interesting to find out they are not common. There has to be a link.

Debbied
09-09-2009, 07:14 PM
thanks for the reassurance - we will be going for an 18mo checkup soon and I will definitely get this checked out!

Another term I've seen mentioned here that I had to look up was clinodactyly. Lukas also has this (crooked pinky fingers) as does my hubby. We are actually very interested in looking at some of dh's baby pictures to see if we can spot a ridge. He does have a fairly narrow forehead, the sacral dimple and VERY crooked pinky fingers (one of his 3 brothers also has the clinodactly and sacral dimple but quite a broad forehead). Lukas is the spitting image of his dad so it seems impossible there is no genetic link involved. Does anyone else's kiddos with metopic ridges have clinodactly? I'm sure I've read someone on here does.

I have clinodactly so does Henry..I didn't even konw what it was until I saw it in someones siggy on here. It said clinodactly of the fifth fingers i counted my fingers and went hmmm, I wonder if that is what is wrong with my pinkies. I looked on wikipedia and the pic under the term clinodactly could be a picture of my hand :no

Henry does not appear to have anything else that would indicate a syndrome etc. Oh other than metopic suture closure of course :sigh


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Jeraldine
09-11-2009, 04:33 AM
I don't really want to bore our readers, but just in case a medical researcher sifts through our postings...

My husband might have had a mild form of metopic ridge when he was a young child, he also has a sacral dimple. Our daughter (as we are just learning) might also have a mild(ish?) form of metopic ridge, and she was born with a sacral dimple, that was difficult to clean when changing her diaper.

When I was pregnant with our daughter, I took only prenatal vitamins, and the very occasional milk shake. Specifically, the initial brand was PrimaCare ONE (1mg Folic), then I changed to Rainbow Light prenatals, and an occasional half serving Natures Way Alive brand whole food (no soy) milk shake mix.

I believe I had lower amniotic fluid levels at around the 22 week gestation mark, along with a spike in fever which lasted only one night.

From around the 22 week point, lasting around 3 weeks, I was not really able to walk nor able to shift in bed due to terrible sacroiliac pain.

Throughout the 1st part of my pregnancy, I drank "high quality" bottled water; for the remainder of my pregnancy, I drank filtered city water.

I ate fairly healthful foods while pregnant, very few sweets, lots of fruit, and raw veg, I've never been a smoker, nor a drinker - in fact, I believe I had only a 1/3rd glass of wine on one occasion.

When my daughter was born I was in my late thirties, gained only 22lbs during my pregnancy, and was 25lbs overweight at conception. My husband in his mid-forties (he has Diabetes II).

My daughter had a comparatively low birth weight (by family standards) 6lbs 11oz, delivered by C-section at full term, and seems to have developed her metopic ridge at around 8.5 months of age. At this time there are no development delays. No IVF, no hormones, or anything for that matter.

At three months of age, our daughter passed through the screening units they have at airports twice. When I was 3 months pregnant I passed through an airport screener twice. I had a chest x-ray around 16 week gestation. My husband and I almost constantly use wifi on our notebooks, and use the internet feature on our mobile phones - even during pregnancy.

No Clinodactyly, but my husband's fingers (all of them) bend far back toward his forearm. It's actually quite shocking to see.

We live in Washington State. Last vaccination either one of us had was eight years ago.

It seems to me that doctors erroneously mention "random occurrence" when asked about causation; if no research has been done with regard to cause, then doctors can't possibly know - instead, they should reply, "I don't know".

Ger
09-12-2009, 02:23 PM
Jeraldine - I think you hit the nail on the head... no one knows. There are so many different women on this website that I doubt we could ever find one thing that we all have in common. I often wonder was it something I did but I guess it is one of those things...

Geraldine

Holly
09-12-2009, 04:25 PM
I think theres more then one cause of cranio. I think it could be in uteral, syndromatic, genetic etc. My pregencies and births of my 2 boys were very similer. Tyler was born 2 days before his due date and weighed 9 lbs 1 oz. and was 21.5 in. long and Jakob was a week past his due date and weighed 9lbs. 7oz and 22.5 in. long both boys were born sunny side up. I felt lots of movement while i was pregnent with both. Also had lots of sciatic nerve pain. We seen the genetist while we were in the hospital during jakobs surgery and she said that more then likely its genetic but sciencist havn't discovered the gene that causes it yet. I'm not sure that i like the fluke theroy. I think something some how causes it.

NorthernLight
09-12-2009, 06:54 PM
Matthew was born with a heart arrhythmia that he is outgrowing (thank God).

Can I ask what kind of arrhythmia he had? My oldest one has a heart arrhythmia called AVNRT. He also has a metopic ridge.

Nezzy
09-14-2009, 06:54 PM
FYI...I asked Dr. Fearon today if there is any connection between Sacral Dimples and Craniosynostosis. He said no.

Avery's Mom
09-15-2009, 09:05 PM
FYI...I asked Dr. Fearon today if there is any connection between Sacral Dimples and Craniosynostosis. He said no.

Did he offer any explanation as to why it seems all our kids have them? lol

Lara
09-16-2009, 08:23 PM
Did any of you take Accutane as a teenager or young adult? I was on it twice, once at 16 and again at 20. I was 26 when I had Ben. I know Accutane causes major birth defects, but I am wondering if anyone had taken before or long before having a child with cranio.

NorthernLight
09-17-2009, 04:51 AM
Did any of you take Accutane as a teenager or young adult? I was on it twice, once at 16 and again at 20. I was 26 when I had Ben. I know Accutane causes major birth defects, but I am wondering if anyone had taken before or long before having a child with cranio.

This is a drug for acne problems, right? I had acne problems in my early twenties and had treatment with A-vitamins. It was a prescription drug to put on the skin. (liniment) I canīt remember the name, but I think it was called Accutane.

NorthernLight
09-17-2009, 05:03 AM
In another thread in here somebody mentioned PCOS (poly cystic ovary syndrome) and fertility drugs. My gyn said I have a "hint" of PCOS and I also used a fertility drug with progesterone in the first trimester b/c of earlier miscarriages.

(Just came to think about it when acne problems was mentioned b/c acne problems is a common problem for women with PCOS.)

Avery's Mom
09-17-2009, 03:13 PM
Did any of you take Accutane as a teenager or young adult? I was on it twice, once at 16 and again at 20. I was 26 when I had Ben. I know Accutane causes major birth defects, but I am wondering if anyone had taken before or long before having a child with cranio.

No but I DID take Topamax for my migraines and according to this it could have caused ALL of Avery's issues......

http://www.healthcentral.com/migraine/medications/topamax-256973-5.html

cheryl2
09-17-2009, 08:37 PM
This is a drug for acne problems, right? I had acne problems in my early twenties and had treatment with A-vitamins. It was a prescription drug to put on the skin. (liniment) I canīt remember the name, but I think it was called Accutane.

Accutane is an oral medication. I had bad acne as well. The dermatologist would not give me Accutane because of its side effects for women of child bearing age. My brother took it. The pills came in a bubble pack with a big picture of a pregnant woman with a line thru it. So it's very dangerous. But I'd never heard that it causes problems years later. The A-vitamin topical stuff was probably Retin-A.

evergreenmom
09-18-2009, 12:07 AM
I have PCOS and Type II diabetes and took metformin throughout pregnancy. Many years ago I took Paxil(antidepressant) which is linked to many birth defects including Cranio, but I was not on it during pregnancy...don't know if the paxil could have still been in my system and or if it could have affected my ovaries...

I really blame our situation on my small pelvis and Xander being breech- as in really stuck under my ribs for months... I kept asking my ob if he could be hurt by this and if there was a way to move him...wish I would have known about "spinning babies " website on how to turn them in utero...oh well.

*jules*
09-18-2009, 09:38 AM
Many years ago I took Paxil(antidepressant) which is linked to many birth defects including Cranio, but I was not on it during pregnancy...don't know if the paxil could have still been in my system and or if it could have affected my ovaries...



That's interesting Kristin. I also took paxil when I was about 22y/o... I didn't stay on it long because it actually made me worse and of course, my first son was cranio-free. Alex was born 10yrs after I got off the paxil so I'm sure it's not that...just interesting info.

AllyCat
09-19-2009, 02:41 AM
Supraventricular tachycardia (SVT). Initially, they thought it was Wolff-Parkinson-White Syndrome, but we refused any genetic testing because we didn't want a pre-existing condition on his insurance (something the modern world does not have to worry about, but in the US, it is a basic right for insurance company executives get their vacation homes in Tahiti).

It is essentially the same thing as your oldest has. AVNRT stands for Atrio-ventricular nodal re-entry tachycardia. There is an extra electrical pathway that conducts into the left side of the heart (heart beat originates in the right atrium...hence the name "atrio") It essentially doubles the heart rate and beating from the muscular ventricles ("ventricular").


Can I ask what kind of arrhythmia he had? My oldest one has a heart arrhythmia called AVNRT. He also has a metopic ridge.

AllyCat
09-19-2009, 02:42 AM
Accutane is an oral medication. The A-vitamin topical stuff was probably Retin-A.

Yes.

~Em~
09-20-2009, 12:37 PM
I ran across this today, though I doubt many of you are heavy smokers: http://www3.interscience.wiley.com/journal/117354680/abstract?CRETRY=1&SRETRY=0

"RESULTS: Smoking during the first month of pregnancy was not associated with craniosynostosis. Smoking later in pregnancy was associated with increased risk, but only among mothers who smoked at least one pack/day."

Mama Musica
09-20-2009, 01:18 PM
I took accutane as a teenager. I also took Clomid and metformin to get pregnant with Max, and continued the Metformin for the first 14 weeks to reduce the chance of miscarriage. I also took a drugs called Diamox and Lasix all through my pregnancy due to a very random rare neurological condition I have. (We like to do rare conditions at our house!)

Interesting about Topamax- topamax and diamox are related...

~Em~
09-20-2009, 03:58 PM
I was just reading and came across this article too. http://emedicine.medscape.com/article/1280365-overview It's very long and quite thorough. I'm sure it's linked elsewhere on the site, but since it mentions causes....


Craniosynostosis may be induced through internal and external forces. Environmental (external) forces can cause premature fusion of sutures. Prenatal compression of the fetal head is implicated as a cause of craniosynostosis. ...

Internal forces known to cause craniosynostosis include a number of teratogens and diseases. Teratogens implicated in craniosynostosis include aminopterin, diphenylhydantoin, valproic acid, oxymetazoline hydrochloride, and possibly isotretinoin. Craniosynostosis has been observed in association with a number of maternal metabolic disorders including hyperthyroidism (http://emedicine.medscape.com/article/921707-overview), rickets (http://emedicine.medscape.com/article/985510-overview), Hurler syndrome, Morquio syndrome, beta-glucuronidase deficiency, mucolipidosis III, and a host of hematologic disorders.

hayley
09-20-2009, 04:19 PM
I ran across this today, though I doubt many of you are heavy smokers: http://www3.interscience.wiley.com/journal/117354680/abstract?CRETRY=1&SRETRY=0

"RESULTS: Smoking during the first month of pregnancy was not associated with craniosynostosis. Smoking later in pregnancy was associated with increased risk, but only among mothers who smoked at least one pack/day."


I shamefully:curse have to say i was a heavy smoker during my pregnancy ranging from none some days to 10 most days but on occasions maybe 20 a day.......i can't read the link as i messed my laptop up is that all it says about smokers......maybe it was all my fault then :no

~Em~
09-20-2009, 04:27 PM
If it was a strong association, there would have been a huge number of cases in the 50's, 60's, and 70's when smoking during pregnancy was much more common and actually quite acceptable. I'd bet there is more to it than "smoking" per se. It may be that smoking leads to lowered fluid levels which cramps the baby, or something more indirect. At this point, what's happened has happened and you really can't wallow in guilt over a possible association, because the truth is, short of a direct genetic link, most of us will never know the true cause. (((Hugs)))

fitmomof2ae
09-20-2009, 07:35 PM
This is an interesting thread because I've see similar ones in the past. However, each time it comes up, it is a little different as we learn more about cranio and get new members on the site.

I've never smoked or been on any type of medication. I took generic flinstone multi-vitamins containing folic acid with DS and took name brand chewable prenatals with DD. I ate a lot of carbs with both. Bread is fortified with FA and so is the cereal I have for breakfast every morning. So, I had a lot of FA. However, I did this with DD and she does not have cranio. For some reason, some cranios (sagittal) are more prevalent in boys than girls. I am not aware of any other cases of cranio in the family.

Avery's Mom
09-21-2009, 12:03 PM
I took accutane as a teenager. I also took Clomid and metformin to get pregnant with Max, and continued the Metformin for the first 14 weeks to reduce the chance of miscarriage. I also took a drugs called Diamox and Lasix all through my pregnancy due to a very random rare neurological condition I have. (We like to do rare conditions at our house!)

Interesting about Topamax- topamax and diamox are related...

I took Clomid as well....*shrug*

Ger
09-21-2009, 04:53 PM
I was a smoker but did quit while pregnant, though I did have a two on my wedding day which is when I was 3 months pregnant. I also suffered from an overactive thyroid and had it removed a few years ago, but I went to see a specialist and told her that I was getting married and planning to start a family asap and they were watching my medication (little did I know that I was pregnant that day when I went to see her).
I also was at my best friends wedding before I found out and I got very drunk on wine..... and I also did a lot of driving when I was pregnant. I have thought about everything, even the big pants I wore on my wedding day in the hope of disguing the bump. lol. I really wish there was more research and more awareness of this. I do know that when I was pregnant I prayed for the strength to deal with whatever happened and thankfully I am mostly ok with this. Thanks to a lot of you on here.

Thanks

Danielle
09-24-2009, 08:46 PM
I often think back when i was pregnant with Adrian and wonder what i did wrong. Is it my fault that Adrian had cranio?? Who knows???:dunno
I just stopped taking Lexapro 6 weeks into the pregnancy. Did this cause Adrian's birth defect?? The doctors said probably not but i just don't know!!

Danielle

*jules*
09-24-2009, 09:14 PM
Danielle. It's not your fault!!! Please don't blame yourself. I took no meds, no alcohol, no nothing while I was pregnant and Alex was still born with cranio. It's just one of those things and until they have more solid evidence of cause and effect, there is no point in feeling guilty. Hugs. I know how difficult everything's been for you. Wish I knew how to make you feel better :)

Danielle
09-24-2009, 10:47 PM
Thank you Julie for your kind words. Having one of those "down" days today.

Avery's Mom
09-25-2009, 07:23 AM
I often think back when i was pregnant with Adrian and wonder what i did wrong. Is it my fault that Adrian had cranio?? Who knows???:dunno
I just stopped taking Lexapro 6 weeks into the pregnancy. Did this cause Adrian's birth defect?? The doctors said probably not but i just don't know!!

Danielle

I do the same Danielle....I took Topamax for Migraines until around 6 weeks as well. You cannot beat yourself up or second guess what might have been.

Zara's mum
09-25-2009, 08:20 AM
You know, I think we all like to blame something. It's so much easier in life to accept something if we can pin the blame down. but you know what, we can't, because, I truly believe they don't know what causes cranio. I did everythign the same on Zara's pregnancy as I did with my 2 cranio free boys, and yet she was born with it. I like to tell myself she was stuck, as i truly believe she was, but, who knows, we will never know.There are so many things it could be, and, I think it most likely is the "fluke" (unless it's associated with a chromosome or genes) . Please girls don't feel bad xx

AllyCat
09-25-2009, 04:59 PM
Danielle, it was not your fault! It wasn't anyone's fault! Lots of people take medications during pregnancy and their babies are fine. Many take nothing and their babies still have cranio or worse problems. We just don't know. It's normal to wonder what we did to cause this, but I don't think there is ANYONE who can say something they specifically did caused the problem. Hugs to you and your LO! You're a good momma!

navyjen
11-03-2009, 12:30 PM
Although I am new here. I want to add my two cents. While I was in labor I felt pressure on my right hip. Not where you normally feel pressure. I felt like she was pushing down on my hip. I pushed for 2 hours and Camryn was stuck in a funny position would not turn to come out so I had an emergency c section. Camryn was stuck really bad. Her shoulder came out first doctor had a hard time pulling her out. I think her position in utero might be part of the cause for her metopic fusing early. She has no other symptoms of anything.

momofaaa
11-10-2009, 11:08 AM
I know how you feel. We all have done this. They say nothing is to blame. But i believe it was my pelvic area inside. Aurora was my 3rd baby born. My first should of been a csection but wasn't. I believe the scar tissue from the damage that did, caused it. People can tell me otherwise but its what i believe.

Leighasmom
11-20-2009, 12:57 AM
Danielle. It's not your fault!!! Please don't blame yourself. I took no meds, no alcohol, no nothing while I was pregnant and Alex was still born with cranio. It's just one of those things and until they have more solid evidence of cause and effect, there is no point in feeling guilty. Hugs. I know how difficult everything's been for you. Wish I knew how to make you feel better :)

I blame Leigha's dad's poor genes...lol but even with all the family history they can't find her defective gene so we are left with telling Austen and Leigha you have a 50/50 chance of passing this on. They continue to research and hopefully the corrective procedures continue to get even better. You didn't do anything at all Danielle lots of times its a random mutation and when it happens one in 2000 births its just something hiding in the genes. But I too cut out caffine, no alcohol, no meds, no smoking and ended up with one kid (Austen)who had a undecended testicle and surgery for that when I was pregnant with Leigha, then he has ADHD which has been a heck of a challenge and Leigha's my cranio kid. Colton had a heart murmur when he was born but that went away. We can only do the best for our kids.
Now my next question is how come the Duggars don't have a plagio or cranio baby??...you would think with 19 kids there would be a few flaws in a couple of those kids...lol

Avery's Mom
11-23-2009, 08:25 AM
Now my next question is how come the Duggars don't have a plagio or cranio baby??...you would think with 19 kids there would be a few flaws in a couple of those kids...lol

You would think! lol

Alixe
11-25-2009, 03:22 PM
Interesting on the Sacral Dimples - Owen has two, just above his bombie (sorry, family word for bum but had to use it :cool ) one either side of his spine. When I first read this post I thought he had the one, but checked tonight and there's definitely two!

Maddie, our 4 year old has one slightly higher up but much deeper and apparently DH's son has one also and MIL said tonight when we filled her in on everything (they've been in Spain) that they're common in their family.

In terms of why - with Owen who knows. He was prem (only 2lb 12oz) so I can't believe it was pressure as he should have had plenty of movement room.

I didn't take folic acid or any other meds and hadn't in at least 12 months prior to his conception. The whole family has been checking their heads since Monday (when we found out) and no-one else has the same (although one of my Dad's ears is higher than the other - a fact I never thought would be of any importance to me!!!).

It's the same though, as why was he premature. It could have been any number of reasons including anything I may have done.

There's a strong case that it's something to do with me and boys (my first child, Jonathan, was born at 27 weeks but sadly only lived 17 days. Identical birth situation to Owen.

Maddie turned up 11 days late after two weeks of me walking for miles, eating pineapple and following most of the other old wives tales about how to get the baby to come out apart from the castor oil one!).

In the UK I believe that they won't put any time/effort/funding into looking at any possible causes of these things until there have been three occurrences (same as with miscarriages) and as we don't intend any more kids I guess we'll never know.

At the end of the day I would love to know why in both cases, and I hope that funding in looking at any areas such as this is found - especially if there is a way of prevention so that other people don't go through it.

But please don't blame yourselves :grouphug

Alixe
x

PS. Oooh I've found the smilies!

Lukeysmommy
11-25-2009, 05:41 PM
I asked the pedi yesterday about the sacral dimples & also clinodactyl. These both run through DH's family, although Lukas is the only one with any cranio. The pedi said both are hereditary & will be more common in some families than others but to his knowledge no connection to the cranio. He said they both have about a 25% occurence in the general population. He did check the sacral dimple, I guess in some cases it can be an indicator of neurological problems (???) but Lukas' was normal.

Flofam
11-26-2009, 01:12 AM
Our situation is a bit different than you. Jolenes Birth Mom has Aperts as well. (if you have Aperts you have a 50/50 chance passing it on to your own children).
When we went to see Dr. Fearon this week, we told him that Jolenes mother has Aperts and he told us this was a 1st for him. I said what do you mean, he said it was the 1st time he ever had a Mom and child both having Aperts. SO OUR JOLENE IS A SPECIAL LITTLE GAL. :-)

LayneMommy
11-29-2009, 12:01 AM
Max also has a sacral dimple. Very interesting. He also has a pair of dimples in his shoulders, elbows and hands. We did a round of genetic testing, but everything they screened for came back normal. I'm not convinced that he doesn't have a small duplication or deletion somewhere- there's just too many things going on with him for it to be a big coincidence. But, he's developing normally with the exception of the cranio issues, so we're not going to pursue it any further.

Layne also has the same dimples! Weird! We were diagnosed as saggital, then he developed more closures after surgery. We also had testing done and nothing....

LayneMommy
11-29-2009, 12:22 AM
I know it sucks and is hard to accept but I think sometimes it is just a "lightening bolt" situation. There was no reason I had to burry my first daughter except that Potter's "just" happened to me. I do believe that someday MOST cranio will be found to be genetic. Our genetics doc said Layne is most likely an undiscovered genetic kind of cranio....time will tell.

Danielle
09-03-2010, 11:36 PM
Adrian is now 2 years old amd has caught up in his gross motor skills.
He has a speech delay of probably 8-9 months .

WW1
09-04-2010, 06:32 AM
What an interesting thread! Rebecca has non-syndromic saggital cranio and the docs said at this time they really don't know what causes it.

Just to add my history to the list (in case someone out there can find a link!)

We used clomid to conceive Rebecca due to PCOS and previous mc.

I took the recommended amount of folic acid throughout pregnancy.

I didn't smoke (have never smoked) or drink throughout (either conception or pg) and I ate healthily. I followed all NHS guidelines about what to avoid.

At 34 weeks I was measuring big and found to have polyhydramniosis (too much fluid). Rebecca was head down but not engaged until just before I was induced at 39 weeks (I was induced to the polyhydramniosis and the risk of cord prolapse). I ended up having a section due to failure to progress.

Rebecca doesn't have a sacral dimple that I'm aware of (would it be obvious?) and there is no other cranio in the family. My other half has a big head, as does his family but no issues linked to this.

It's a mystery! I'd love for there to be more research into the causes. I think the folic acid theory is interesting but wouldn't the prevalence of cranio be higher than it is? I hope, over the next few years we find out more. I feel assured though that it's highly unlikely to be something us mums did or didn't do!

Marientje
09-04-2010, 10:36 AM
I too read the entire thread and found some simmilarity's:

We used clomid and pregnyl to conceive Pleun due to bad spermotozoids.
I used folic acid. Pleun has a sacral dimple and double hair whorls.

Monkey'sMommy
09-04-2010, 04:40 PM
I haven't read the whole thread (10 pages is a little intimidating! Maybe after the kiddos go to bed.) But I thought I would just say that I have a bicornuate uterus (heart-shaped).

Big Sister Bear was born at 38 weeks. I had a c-section scheduled for 39 weeks since she was transverse breech, but she ran out of room and labor started on its own at 38 weeks. She was small but healthy and has had no issues with her head or development (she is super smart!)

Little Brother Monkey was born at 39 weeks, by scheduled repeat c-section. Though I did go into labor on my own the night before the section. He was head-down, weighed 6 pounds 10 ounces and there was no evidence at the time of cranio (but we weren't looking for it.)

I have read in a few places that bicornuate uterus could potentially cause cranio, but I don't know how reputable those sources were.

Jakey's Mummy
09-04-2010, 05:28 PM
Hmmmm.

I used Clomid too due to PCOS.

I had a very healthy pregnancy and followed all the guidelines.

Jake was born two days early by emergency C Section as he was stuck in my pelvis. I had severe PPH after his birth.

I hope more research is carried out so we know once and for all.

KeegansMom
09-04-2010, 06:45 PM
Interesting! Keegan also has a sacral dimple above his bottom.

Danielle
09-04-2010, 10:04 PM
Doctors here are still researching what causes craniosynostosis.
Hopefully one day they can tell us what the causes actually are!!!

Mgbianco
09-04-2010, 10:24 PM
Thanks Danielle for starting this thread. VERY INTERESTING. I went through the whole 11 pages and found some interesting food for thought. I am interested in the folic acid discussion.
I took 1.1 mg of folic acid along with foods from my diet. I know that one particular folic acid brand ( pregvit folic acid 5.0mg) contains up to 5.0 mg folic acid above the upper limits. My collegue has done some research on folic acid and risk of taking too much.
THere perhaps may not be a link to cranio, but I do know that taking an excess may lead to some types of diseases. But we are talking about high amounts from supplementation not from diet alone.

JDBtrigonobaby
09-06-2010, 09:08 PM
I'm seeing a trend here also of the use of Clomid. I did use clomid in the early months of my fertility journey. I was/am slightly PCOS, but was told my levels are not high enough to really diagnose me as PCOS. While trying to conceive, I used Clomid, Ovidrel, Novarel, and in the last months, mixed doses of Bravelle and Menopur. The result... TWINS!:kick And my one twin is a trig baby. However, he was on my cervix my entire pregnancy (36w5d) and he even had a ring around his head that measured 4cm., which was as far as I was dilated before c-section.
My son will be going in for surgery Oct. 8th w/ Drs. Fearon and Sacco. When speaking w/ Dr. Fearon, he did mention that trig is common among twins (b/c of cramped space in utero) and also more common in males!

Janet
09-06-2010, 09:15 PM
Yes...it is more common in Males....I have no clue why. On the sick kids website it says that metopic happens 1 in 15,000 births with a 3:1 boys to girls.
My Fiona is pretty rare :adore

I also have/had PCOS, I was just about to start meds when we found out we were expecting.

Mgbianco
09-06-2010, 09:25 PM
I also have PCOS - no meds and still got pregnant with no issues. Go figure. I do have fibroids and polys that were remove by D&C prior to my first pregnancy.

mommyjamieof2
09-11-2010, 12:11 AM
I was a smoker but did quit while pregnant, though I did have a two on my wedding day which is when I was 3 months pregnant. I also suffered from an overactive thyroid and had it removed a few years ago, but I went to see a specialist and told her that I was getting married and planning to start a family asap and they were watching my medication (little did I know that I was pregnant that day when I went to see her).
I also was at my best friends wedding before I found out and I got very drunk on wine..... and I also did a lot of driving when I was pregnant. I have thought about everything, even the big pants I wore on my wedding day in the hope of disguing the bump. lol. I really wish there was more research and more awareness of this. I do know that when I was pregnant I prayed for the strength to deal with whatever happened and thankfully I am mostly ok with this. Thanks to a lot of you on here.

Thanks

Hyperthyroid will cause it. It is what is believed to have caused Gage's. And the surgeon we visited said he actually had another case caused by hyperthyroid. My understanding is you still can have elevated antibodies even after having the thyroid removed.
I have a link in my sig.

Danielle
09-15-2010, 02:34 AM
I was on Lexapro when I conceived with Adrian.... not sure if there is any research out there linking this anti- anxiety drug to cranio????

NCmommy
09-15-2010, 10:11 AM
I was on celexa when I became pregnant with Violet. Around 14 weeks I had developed a sub chronic hemmorage. I also have hypothyroidism. I was on antibiotics 5 times while pg, I had bronchitis that just wouldn't go away.
Those are the only things different that I remember. We did notice that her head wasn't symmetrical around 17 weeks by 4d u/s. We brought it to our OB's attention but he said everything was fine. Her fusion must have developed very early in utero.
I forgot to add that Violet has a sacral dimple too!

Jaycie
09-15-2010, 11:50 PM
Okay, the sacral dimple thing is almost freaky now. Addy has it, too! I was just looking it up again the other day, and reading (what others said) about it being pretty uncommon (around 2% of babies). The folic acid connection seems weird, though -- why would we all be taking folic acid to prevent spina bifida, and then end up with babies with sacral dimples (related to spina bifida) and cranio?? Still... interesting.

My personal belief is more along the lines of improper positioning in utero. I KNOW Addy was in a weird position for the last several weeks -- more or less posterior. She was not very big (6 lbs. 14 oz. at birth), but I tried my darnedest to get her to flip anterior, and she would NOT move. Thank goodness she ended up coming out the right way (probably thanks in part to a sac that didn't break till the very end), or that could have been one heck of a painful birthing experience!

I believe my first daughter may have been somewhat posterior as well, but she moved around a lot more. My second daughter was the biggest, and hung so low it was painful to walk sometimes, but she was in a great position. Neither of them have cranio. I can't think of anything significant that I did differently with my last pregnancy than the others -- except that we moved, and so I was drinking different water. As far as food and general health, I was actually eating much better and staying a lot more active than the previous pregnancies! That's what chasing 2 toddlers will do to you. :-)

Of course, it could very well be that the cause for one baby is completely different than the cause for another baby, but this is just my theory for my daughter.

Nay
09-18-2010, 01:20 AM
This is very interesting.
With my pregnancy with Aaden (sagittal cranio):

I carried him very low
I was in so much pain from about 20 weeks on--hurt to walk, stand, roll over. (didn't have this type of pain with my first 2 pregnancies)--- I'm sure he was in there "funny".
I didn't take extra folic acid, but I was on regular prenatal vitamins.
I had HORRIBLE morning sickness the first few months & took zofran. But that was the only medicine that I took.
Aaden doesn't have the sacral dimple, but he was tongue tied. Otherwise, totally healthy/normal.
Someone at Denver Children's Hospital told me that Colorado is the state that has the highest rate of cranio in the US--and they're researching it to see if it could be something environmental--like elevation or something. Who knows???!

SummerEhmann
11-08-2010, 05:05 PM
This is very interesting thread. I took a regular prenatal vitamin with 800 mg of folic acid and I took an extra 800 mg in addition to that! I did this everyday of both of my pregnancies. I really hope folic acid isn't linked to Cranio as I would hate if I did something to cause this on my baby.

Whitter Bug's Momma
11-15-2010, 12:31 AM
Wow this thread is intresting!

Whit has a sarcal dimple.
The only med I took was Zofran.
I did have horrible side and hip pain, and always thought that she was in there funny. I had terrible back labor too..
I was in the hospital at 25 weeks pregnant with the Swine Flu and had a Chest X-Ray

Something I've been wanting to ask is, we had a 3D Ultrasound done and looking at it I can see her Metopic Ridge. Am I crazy? Or could it have fused that early?

Janet
11-15-2010, 07:50 AM
Something I've been wanting to ask is, we had a 3D Ultrasound done and looking at it I can see her Metopic Ridge. Am I crazy? Or could it have fused that early?

Fiona was born with her metopic suture fused, here she is 2 days old:

http://i149.photobucket.com/albums/s76/JanetM73/IMG_0023a.jpg

G2sMama
11-15-2010, 10:36 PM
I've just read all 12 pages of this thread in an effort to see common denominators and am fascinated. All it would take is some doctor who is into research like this to hop on this board and start asking questions and sifting through answers. We have such a diverse group of people here, from ethnicity and location, to health and diet, to age and activities. Don't you think we about have all bases covered for a scientific study??? :)

Anyway, I'd like to add my info just in case that magic doctor shows up. LOL

~ I didn't have any trouble getting pregnant. My first one ended in an early miscarriage, though, so with G1 I was put on progesterone immediately. They skipped it with G2.
~ I had severe Hyperemesis Gravidarum with both pregnancies. Due to having a hig risk pregnancy, I was exposed to numerous sonograms and because of having to have feeding tubes inserted (NG tubes and PICC lines) was exposed to xrays several times.
~ I took prescription prenatals both pregnancies (1000 mg FA, I believe)
~ Both Gs have very deep sacral dimples. G2 has metopic cranio. G1 doesn't that we are aware of (sometimes I look at her and wonder if she is extremely mild metopic), but she was tongue-tied.

And I'm right there with Janet in answering Whitterbug's Mama's question.... G2 was very obviously metopic at birth, so there is no doubt that the fuse happened in utero. I'll have to find the 3D sono pics of her and see if I can see anything in them.

What about flu vaccines? Or any vaccine for that matter? I didn't have any during G1's pregnancy, but caved to the pressure to get the H1N1 vaccine with G2.

Ger
11-16-2010, 04:42 PM
Wow this thread is intresting!


Something I've been wanting to ask is, we had a 3D Ultrasound done and looking at it I can see her Metopic Ridge. Am I crazy? Or could it have fused that early?

I remember noticing Neve head being strange in my 21 week scan, when I look at it again I see a thick straight line on her forehead when she is in side profile. I looked back at an earlier scan and it wasnt there. I will load it into my profile, but I am sure that the metopic was fused at this stage.

Geraldine

Becca
11-16-2010, 08:12 PM
I just read most of this thread and find it interesting as well.

Bailey has a sacral dimple as well. I unfortunately took Lexapro for the first 16 weeks of my pregnancy. I came off of it gradually because the research I did said it was not good in the third trimester, then aftewards I found out its horrible in the first.

nancy
11-16-2010, 10:07 PM
she was engaged right down in my pelvis weeks before birth, i had to crawl to the loo in the night i could hardly walk during the day.... :giggle
Same here!!!!!!!!!!!

torichan
11-16-2010, 11:11 PM
I've always wondered if they would have moved my baby while she was inside of me if it would have prevented her cranio. (sagittal) She had such a huge head and she was stuck up in my ribs forever, then sideways. It was awful. I had such a huge and weirdly shaped belly. I even got sideways stretch marks! Ugh! The Dr's told me that they believe her cranio was positional and due to the size of her head. Hopefully if we have another baby everything is stretched out and roomy! LOL

Danielle
11-17-2010, 03:22 AM
Becca, I also took Lexapro until I found out I was preganant at 6 weeks , then I stopped straight away...

Becca
11-17-2010, 11:15 AM
Becca, I also took Lexapro until I found out I was preganant at 6 weeks , then I stopped straight away...


My doctors didnt want me to stop. I weened myself off anyways. You stopped cold turkey?? DId you have withdrawls? Ive been on it twice and Im actually back on it. I want to come off again but had a hard time coming off it the first time.

MomtoThomas
11-17-2010, 06:05 PM
I just read through all of this. My son has a sacral dimple as well. Interesting...

nancy
11-17-2010, 10:42 PM
Sacral dimples-- When I was going through massage therapy school, we used peoples, usually men's, sacral dimples as reference markers. I was under the impression that they are a normal part of many people's anatomy.

Danielle
11-17-2010, 11:14 PM
My doctors didnt want me to stop. I weened myself off anyways. You stopped cold turkey?? DId you have withdrawls? Ive been on it twice and Im actually back on it. I want to come off again but had a hard time coming off it the first time.
Yes, I actually went cold turkey... i was only taking 5mg of Lexapro when i found out i was pregnant . I didn't have any side effects.
I am back on it again now(10mg)... not sure how I would cope with my anxiety without it!!

brynnsmom
11-17-2010, 11:27 PM
This is all very interesting... I keep wondering what happened to cause my daughter to have cranio. My son who is 4 has absolutely no problems. I had gestational diabetes with my daughter and took glyburide at 6 months pregnant for 3 days b/c my blood sugars were too high even when all I would eat was lettuce and vegetables. (So I was getting TONS of folic acid) I remember feeling her drop as soon as I took those meds and had a hard time walking throughout the rest of my pregnancy. I quit taking the meds b/c I just felt something bad was happening so they put me on insulin instead. Since I was high risk I had weekly ultrasounds and Brynn was always on my right hip. I still have hip pains. We will have genetic testing done sometime in the future, but sometimes I wonder if it was the position she was in since she is left coronal.

Becca
11-18-2010, 08:09 AM
Yes, I actually went cold turkey... i was only taking 5mg of Lexapro when i found out i was pregnant . I didn't have any side effects.
I am back on it again now(10mg)... not sure how I would cope with my anxiety without it!!
LOL Thats exactly why Im back on it! Thats awesome you could go cold turkey I was on 10mg at the time and am again. I had major headaches and was so lethargic. Also had something I couldn't describe until I looked it up but they refereed to them as brain zaps. This is why I didnt want to go back on it but I knew it worked well for me...ughh

Jaycie
11-18-2010, 10:44 PM
This is all very interesting... I keep wondering what happened to cause my daughter to have cranio. My son who is 4 has absolutely no problems. I had gestational diabetes with my daughter and took glyburide at 6 months pregnant for 3 days b/c my blood sugars were too high even when all I would eat was lettuce and vegetables. (So I was getting TONS of folic acid) I remember feeling her drop as soon as I took those meds and had a hard time walking throughout the rest of my pregnancy. I quit taking the meds b/c I just felt something bad was happening so they put me on insulin instead. Since I was high risk I had weekly ultrasounds and Brynn was always on my right hip. I still have hip pains. We will have genetic testing done sometime in the future, but sometimes I wonder if it was the position she was in since she is left coronal.

I think many moms here have more children with absolutely no problems. I have to believe it is related to positioning in the womb in at least some cases. My second daughter felt like her head was down in my pelvis for like the last 2 months of pregnancy (although my doc kept saying she was still "way up there"). But she was born without any problems (actually my easiest pushing experience), and both then and now has a HUGE head!

My cranio daughter seemed not to have that big of a head, but I am convinced her head was lodged somewhere weird... the midwives thought she was sort of posterior, but she was not all the way flipped around, and when I think about it, her little coronal head would have fit in just the right spot where I felt her. I was doing everything I could to get her to flip anterior, but she did NOT want to leave that spot, so I think she was just sorta stuck. I think either she was stuck that way because her head was already coronal and that's where she fit best, or her head started to grow that way because that's where she was lodged. I think quite likely it was the latter.

VRZOmommy
11-18-2010, 11:21 PM
My husband has metopic ridge, untreated mild trigonocephaly, epicanthal folds, some funny-ish hands(i didn't notice till 2 tears in) his mother appears to have mild trig(from what we can see in pics), epicanthal folds, and finally our daughter has Mild trig, metopic rids, epicanthal folds, sacral dimple..... we're thinking its genetic in our case

sproutgirl
11-24-2010, 10:37 PM
Wow, this is an interesting thread. I know I am late chiming in, but it took me a while to read through it all, LOL.

Anyway, just wanted to add that my metopic baby has a sacral dimple as well. I never noticed it until I read this thread and checked her. My 2yo also has a sacral dimple (but no other health problems). I have noticed hers all along, but never had a clue what it was, but as soon as I read what sacral dimples are I knew that's what I had been seeing. I also have a 6yo who has no problems. However, I have a nephew who has a sacral dimple, and a niece who was born with anencephaly, so out of 7 grandchildren on my husband's side, 4 of them have some form of neural tube defect. Scary.

Oh...and I didn't take any extra folic acid with this pregnancy, so no link there on her cranio.

Jaycie
11-25-2010, 08:07 AM
I wonder if sacral dimples are just more common than we think. As I said in another thread, all three of my girls have at least a slight one, but other than my daughter's cranio issues, they are all perfectly normal otherwise. Seems like I've been reading other people's notes that sacral dimples are just a variation of normal.

sproutgirl
11-25-2010, 11:24 AM
I wonder if sacral dimples are just more common than we think. As I said in another thread, all three of my girls have at least a slight one, but other than my daughter's cranio issues, they are all perfectly normal otherwise. Seems like I've been reading other people's notes that sacral dimples are just a variation of normal.

It does make you wonder...

sproutgirl
11-25-2010, 11:36 AM
Here are some links I found when I googled "how common are sacral dimples"...

Isolated sacral dimples are a common occurrence in Caucasian newborns and there has been a concern about their association with occult spinal dysraphism. A retrospective study was carried out in which infants born in a regional hospital during the year 2003 with a diagnosis of sacral dimple were examined. Twenty-six infants (0.5%) were identified from 5,440 live births. There was a female predominance (61.5%) and all infants were born at term. A tuft of hair close to the dimple was described in 6 babies, but none had any neurological deficit. Only 4 infants underwent ultrasonography or magnetic resonance imaging. No abnormality was detected. None of the 16 children who had been followed up (median 25.7 months) had any neurological deficit. A review of the current literature strongly indicates that isolated sacral dimples are innocuous and imaging study for occult spinal dysraphism is not indicated.
...Sacral dimples have been conventionally treated as similar to other
cutaneous stigmata such as dimples, hair or pigmented lesions at a higher spinal level as clues of occult spinal dysraphism. Recent studies, however, have indicated that sacral dimples are benign variants of normality.

source: http://hkjpaed.org/pdf/2007;12;93-95.pdf

Also
Minor, shallow sacral dimples have no complications. They are a normal variation.
...There are no known risk factors for minor sacral dimples.
Some type of abnormality in the sacral region is found in
about 3% of normal babies.
source: http://www.impcna.com/intranet/Nelson%20Pediatric/Newborn/SacralDimple[1].pdf