6 Years for a complete diagnosis! This HAS to change!

My daughter was first told she had NASH in 2008 at age 11, now I know that there is NO way that this pediatrician could have known if this was NASH or NAFLD from the ultrasound and blood test results but he was the first to say no reason to do a biopsy or any other tests. My daughter would just have to exercise and eat better.  No other advice was given, no direction as to what it means to eat better with liver disease.

As the years went on we had all kinds of doctors discount my daughters illness, I asked for referrals to a hepatologist and we were sent to a gastroentologist who also shrugged their shoulders and said no point doing any additional testing. My child has been through hell for the last 6 years with extreme vertigo, broken bones that wouldn’t heal, extreme menstrual bleeding and more colds and flus than I can count. Nothing is simple for my daughter any type of trauma to the body in illness or injury takes her down for weeks, never just days like the rest of us. 4 months for a broken toe, that the rest of us would see heal in 6 weeks!  No doctor has ever said hmm well maybe the issues in her liver are causing other things not to work as well in the body.

The liver controls our immunity, the liver controls our metabolism, our eyes, our toxins to the skin causing rashes. When your liver is compromised then there are serious impacts on your day to day life.  But no doctor has ever figured this out for my daughter.

So last week my daughter had a new non invasive test in Toronto called the fibroscan.  This does not need a referral and we were able to book a quick appointment If we had not had this test done we would still be in the dark as to the actual condition of my daughters liver.  The test was easy and fast and no negative impacts on my daughter. The results say that she has mild stage 1 steatosis and mild stage 1 fibrosis. The most important part is clearly fibrosis. This means that she has scar tissue in her liver and it means that the disease is more serious that any doctor has ever considered.

The good news is we now have a baseline to work from and we will focus everything on getting that fibrosis reversed. However, what we will never know is was the disease worse 6 years ago? Has it improved or gotten worse?

If any doctor in the last 6 years had considered the full picture for my daughter ,maybe we could have done this sooner. but nope she will be just fine they said…. Fibrosis folks …not just fine.

Demand that your doctor get the official details of your disease with a biopsy and/or a fibroscan! DO not let them say you will be just fine! IF we did not take this seriously my daughter could be on the transplant list by now. If not for my supporting those with this disease and not letting it go….this could be a much worse story!

 

Advertisements

2 thoughts on “6 Years for a complete diagnosis! This HAS to change!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s