"Suffering the Slings and Arrows of Outrageous Fortune"

The amitriptyline is still not helping Em sleep. She subluxed her neck last night, which is really not a good thing. She also may be developing a gluten sensitivity, which is really, really not a good thing.

Nonetheless, I feel like doing a happy dance today. I got the weight, length and head circumference measurements from the doctor yesterday. They have been dutifully sent off to Dr. Diana Driscoll for her to enter into the clinical study. But, of course, I was too impatient to wait to hear from her as to what the numbers actually mean (they only included the numbers, not the percentiles – which is the important thing in this matter).

So, I went online to find a infant growth chart to figure it out on my own. The first chart I found gave me, what I thought was, significant info. But then I wondered if I was assuming too much or if I even did it right. So, I found another chart. And another. And one more for good measure. And they all give me the similar results – which seems to indicate the Driscoll Theory applies to Em! I will have to wait to hear from Dr. Diana to comfirm but I feel comfortable that I am at least in the ball park with my numbers!

Basically, her weight and length was in the 25th to 50th percentiles for most of her infancy.  BUT, her head circumference was consistently in the 90th to 95th percentiles, after 4 months. This seems to indicate, as least as I understand it, that it is very likely that she had externally communicating hydrocephaly as an infant and her CSF outflow system was compromised, resulting in the various neurological symptoms she currently has today.

This is incredibly important on several levels. First of all, it isn’t just a theory – it comes along with a ready made treatment option. A simple little pill can relieve most, if not all of the symptoms, over night. That is miracle territory, folks!

Secondly, it gives us a tool to watch young kids and intervene BEFORE the neurological symptoms develop.

It explains a whole bunch about EDS that has previously been chalked up to floppiness – of babies, of blood vessels, of the gut, etc. But now, we may really be on to something that can really explain what is going on – particularly when you add in the mast cell aspect. The more knowledge we have, the better we can fight this awful condition and make the lives of EDSers better.

So, today I have an extra dose of hope. Once I get the charted info from Dr. Diana, I will be able to take that data to the headache clinic and ask for Diamox and Zantac/Zyrtec. That data will help get Em the treatment that could give her a life again.

I am off to do that happy dance! 🙂

{ If you are interested in the Driscoll Theory go to http://www.prettyill.com and take a peek in the articles and downloads section. }


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