Thursday, April 7, 2011

It's Called a "Wet" Brain

Sometimes I go browsing through the internet for any new news about Intracranial Hypertension, Pseudotumor Cerebri, or perhaps a new treatment.  I've done all the things that the average parent will do when first confronted with the fact that I now have a chronically ill child.
  1. Panic
  2. Cry
  3. Turn to the Internet
Every doctor on the planet cringes when he learns that his patient is going to do some self-education through the internet.  They know what you'll find and it will feed the panic.  Every worst case scenario for IH will be laid out for the world to see.  You'll read about patients in which the medicine did not work or had a severe reaction.  You'll read about botched surgeries and failed shunts.  You'll read about blindness.  You'll read about intractable pain.  All of which really do happen, but you won't find many stories about successful treatment with the medicines or shunt surgeries that went quite well and continued to balance the intracranial pressure after many years.  In fact, there are many more good stories than bad ones.  We don't hear about the good stories because the patients feel good and move on.  The important message here is that IH CAN be managed.

I know all those things and yet I still crawl around the internet. It's irresistible to me.  I suppose that I want to know all aspects of IH so that I can be prepared in case my daughter takes a turn for the worse.  The other day, I was playing with a new Google feature that allowed me to search for news articles concerning Intracranial Hypertension.  I found some interesting articles such as this one.

Chronic alcoholism is a definite disease.  It can be diagnosed with chemical precision.  It can be cured with certainty.  It is caused by "edema" of the brain. By a "wet" brain.   In chronic alcoholism a diseased condition of the brain covering -- not an infection but an irritation causes cells to secret fluid excessively; and the habitual drunkard craves liquor because of intracranial pressure which may be 10 to 20 times that of normal individuals even when he is not on one of his benders....                                        Read more in the Milwaukee Sentinel

This article is from 1933!  I'm certainly glad that this theory didn't work out.  Otherwise, my daughter would be looking at a future that includes alcoholism.  The diagnosis of intracranial hypertension had been around a long time by 1933.  It is frustrating to know that no treatment for IH has been developed in the 100+ years since it was identified.  However, I'm glad to know that we've made at least a little progress.  Nobody in recent times has tried to connect alcoholism and IH.

More progress has been made towards research in the past 10 years than all the previous decades added together.  We have a patient registry and imaging library which researchers have been using to study IH.  It is a valuable tool that has attracted interest from the US government and NASA.  More than a few studies have already been conducted with a number of studies currently in progress.  After all the time that I have spent looking through the internet, the best source of information and research news is still found at the IHRF

I know all that and yet, I can't resist looking for every possible cure for IH that's floating around and I'm sure that I'm not alone.  As a parent of an IH kid, you are probably doing the same.  If you discover something, please feel free to share it with the rest of us.  In the meantime, you'll want to watch out for a few things.
  1. Sadly, there is an abundance of scam artists willing to take advantage of vulnerable people.  The other day I saw an outstanding website in support of a different rare disease.  I was quite impressed with the appearance of the site, the large amount of support information, and it seems to be a very popular group.  I could not tell what the donations were being used for.  I got curious.  As I dug a little deeper, I discovered that the site was created by a single individual disguised as a "research group".  All donations were going into her pocket rather than research.  As a matter of fact, she had it set up as a charitable organization.  Donations were being used to help support the "website" and publish documentation.  And she was getting quite a large number of donations.  hmmmm....I'm sure that the individuals making donations were being led to believe that there was medical research involved.  There are probably scam artists doing the same for IH.  The lesson I learned -- I will always ask what medical research is being funded by the group to which I am donating.
  2. Instant cures!  Other scam artists will prey upon those of us wanting to find a medicine that works.  Every single one of us would love to find a pill that is a silver bullet and gets rid of all our problems.  You will find plenty of people promoting homeopathic cures if you just "send money to ...".  Others claim that the "establishment" is trying to keep this cure a secret because they view it as a threat, but you can get it "here for only...".  If there is a creative way to lure money away from us, they'll find it!  I have found it best to verify any medical treatments through a second source.  If a company or group of people claim to have found a medicinal cure, then I go directly to the medicine's manufacturer and ask lots of questions.  I ask if this particular medicine has been created as a treatment for IH.  If not, then I ask if it's being used as a standard "off-label" treatment for IH.  You might be surprised to learn, that even "off-label" use of a medicine needs to undergo a double-blind study.  This is to avoid potential harm when it is used in an unconventional way.  Another avenue for verification is to check with the NIH
In the long run, I know that progress will be made towards finding a cure or at least a better treatment.  I also know that I'll continue to explore the world for news and information about IH.  It's my weakness -- I always seek more knowledge.  I'm also learning how to identify misleading information and the internet seems to be turning me into quite a skeptic.  If you are like me, I hope that I've saved you a little time (and money).


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