do you (or your mom) have records of your head size as baby?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

do you (or your mom) have records of your head size as baby?

Postby Cece » Thu Aug 18, 2011 3:58 pm

A description of the study: http://tinyurl.com/3s4rzdx
A consent form to take part in the study:
http://prettyill.com/downloads/Consent_ ... nce_MS.pdf
A contact form that could be used to inquire about the study:
http://prettyill.com/contact
How many people will take part in this research study?
The plan is to include 25 patients with Multiple Sclerosis.
What will happen in this research study?
Patients need not travel for this study. Potential participants with a diagnosis of Multiple
Sclerosis must provide head circumferences, weights, and lengths for approximately the
first 15 months of life (generally in intervals of 2-3 months).
Participants can provide this information to the Investigators on-line – no travel is
necessary. Patients will be asked to complete a questionnaire concerning their symptoms.


This is a study that is now underway. They are looking for more participants. If you have records of your head circumferences, weight and length every few months for your first fifteen months, please contact Dr. Diana to participate in this one.

You might not have these records if you are older, so this study is especially right for those of us who are younger. I mentioned moms in the header, and I am not joking, your mom may have the records even if you don't! Or you may have to contact your childhood doctor, depending on how long records are kept.

Many thanks to anyone who is able to participate as well as to Dr. Diana, who has taken on four research studies at the same time.
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Postby fee001 » Thu Aug 18, 2011 9:20 pm

Hi!

Just some useless info, but did you know that a misaligned Atlas can happein at childbirth.

Also we watch our children, but dont really look at them. It only when they lay still, that a trained eye can see that they have structure issues.

Probably not relevant to this research. but all the same incredibly interesting to me.

good luck with you survey

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Postby Cece » Thu Aug 18, 2011 9:34 pm

I didn't realize that, although it makes sense.

This research is Dr. Diana's IRB approved trial, I am not involved with the research but was reposting about it from before. It struck me that she is looking for 25 MS patients with the medical records from infancy and she hasn't got that number yet. Twenty-five should be very do-able.
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Postby CureIous » Fri Aug 19, 2011 12:04 am

Have become quite familiar with this issue since the birth of my son, as he apparently carried thru the NFS gene from his mother. Between 9-12 months his head circ. Grew in a spurt, causing the ped. to immed send him to a neuro for evaluation for a possible fibroma which would cause the unfused skull to expand so quickly. My wife was in an absolute panic to say the least, me, not so much, as I explained to her the ped. Has no magic glasses to concur that, and is just erring on the side of caution, as babies skulls should not increase growth rates so rapidly. I then went thru every test I could think of, including Babinski, and saw nothing untoward. But, getting to the point, before all that, the very first thing I did was consult my own baby book, as Mom missed NOTHING, even baby teeth growing in, location and date for each one. I wanted to see if this was just a familial oddity and put her distraught mind at ease a bit, maybe myself too.

So out the trusty encyclopedic baby book came, like father like son right? All there in black and white.

Only one problem tho, no head measurements! Length, weight teeth done religiously, but no head circumfrence? What gives?

So I placed a call to HQ, the original dataset transcriber to find out what gives. Guess what? They never TOOK any measurements!

After some more digging, I found out this was not SOP until the mid 70's or so. After all, mri's were not being used normally yet as dx tools. So even if they had measurements that show something amiss, no real simple way to translate that into useful diagnostic info. couple that with your average age of onset at 30 years old, where they may even HAVE those records available, multiply by the % that kept them, then by the even smaller % of those who have MS, then by the miniscule % that have even heard of CCSVI, finally times those that are aware of this study, and it's no wonder she cant fill the slots quickly. Those medical records, if they existed in the first, are long gone...

She'll get them trickled in eventually I'm sure.

When it came to my son Noah, named in honor of my own "new world experience", what I did in the interim was show my wife the plots we DID have, of our firstborn daughter, and sure enough, plain as day, between 9-12 months she did indeed have a little spurt of growth in the head circ. Which then leveled out in the months after.

He got a full neuro exam, doc said "no way" on an MRI just yet, due to sedation requirements, and here some 9 months later, he's right back in a normal growth pattern and DEF. No neuro deficits.

Was that TMI?
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Postby bluesky63 » Fri Aug 19, 2011 5:46 am

Actually, this is fascinating -- how all of these wide-ranging factors might come together from so many different streams to create the one awful thing called "multiple sclerosis," with each of them being, as Dr. Dake termed it, a promoter. And yes, Cece, as you indicated earlier, any individual's expression of this disease shows more or less severe disability depending on their unique internal ecosystem -- a combination of genetics, environment, diet, lifestyle, and so on.

My point -- look just at Ehlers-Danlos Syndrome, which Dr. Diana is focusing on: This is another syndrome poorly understood, with profound effects on every body system more or less expressed in each uniquely affected family member due to genetic defects in connective tissue. Some people are apparently "normal" and some are incapacitated, with the same genes, in the same family.

Consider how this could intersect with CCSVI. For starters obviously it would affect the blood vessels themselves. Then it could affect bleeding and healing after an angioplasty. There are forms not yet discovered. And clearly if the joints are lax to a greater or lesser degree, couldn't it also affect the Atlas and other supportive skeletal infrastructure?

At some point you could become the person who has it all -- genetic predisposition, a virus along the way, an accident that knocks you out of whack, nutritional deficiencies, stress, a tick in the world's backyard, what am i forgetting? :-) You would test positive for everything and respond to every mainstream and alternative approach and provide "proof" for all of them, right?

You know, if you have EDS, and you have a chiropractic adjustment, your loose joints are just going to slide right back wherever they want to go as soon as you leave the office. Perhaps you should marry an alternative practitioner, preferably a massage therapist. Oh, I like this idea. :-)

I can't tell you how much I treasure the nurturing image of a dad giving his baby the neuro exam, babinski, etc. What a lucky family. No, not TMI. It really brought back memories of my own children and consulting with the pediatric neuro for them. Same thing -- too young for MRIs without sedation -- and over time the early panic smoothed out and the developmental anomalies eventually became more clear. In our case a geneticist said it was EDS, but not for many years, till my youngest was seven years old.

I am awed that we are actually able to see inside the body as we can, to have such images, to have MRI and MRV, IVUS -- it makes me think of the first ultrasounds of babies, the miracle of seeing a new life. I think of IVUS as a window and another miracle.

All of this is too new to think we really have the absolute answers, isn't it? Very, very exciting to be here to see so much exploration and potential. I wonder how this will look in another year, in five years. :-)
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Postby David1949 » Mon Aug 22, 2011 2:43 pm

I'm a pretty old geezer. I don't think inches were invented yet when I was born. :-)
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