A mom with a lot of time on her hands and not following the rules

I have already broke this news on facebook but I decided it was worth blogging about.  Maybe it will inspire others to request more from our physicians. 

My son, Westin, has been dealing with chronic (constant) burning in his stomach.  It doesn't go away.  It only gets worse or a little better.  It is never gone or even close to gone.  I can remember something starting back as early as November because I remember mentioning it to his allergist.  But it wasn't until the end of December or so that it started getting to this point of constant pain. 

We have seen numerous Gastro's over the years.  Westin saw his first gastro, oh, maybe 7 years ago or so.  He was then diagnosed with Celiac Disease 5 years ago.  Celiac is treated with diet and we didn't really see a need for the gastro at that time.  But we were encouraged to go once a year for a check up.  So we had our first gastro 7 years ago.  We saw a different one for the Celiac diagnosis, who I didn't care for.  So when we were encouraged to do a annual follow up, I requested yet another gastro.  Then we just kind of left it alone and hadn't been followed since.  Then 2 years ago Westin started having swallowing issues.  Our allergist refered us to a gastro in Grand Rapids (until this point we had stayed with the gastros in Kalamazoo.  We met with this new gastro once.  I didn't care for the drive.  I hated their lab.  And I found that I came accross the answer to his swallowing problems on my own, so they really were of no help. 

So with this new problem I decided it was time to give the new gastro in town a try.  Our endo spoke highly of him so I started the request to transfer records to his office and wait for our initial appointment (this was November).  Initially we didn't get an appointment set until the beginning of March.  When his burning started to really escalate in January, I requested to be added to a cancelation list.  The day we ended up in the ER, they suddenly were able to move his appointment up to Feb 15th. 

We met with the new gastro and I really, really liked him.  He scheduled numerous tests, but unfortunately they were unable to schedule his endoscopy until April 15th, a full 2 months after our appointment.  While I had time to wait, I have become Sherlock Mom.  I can't sit here for 2 months and not be actively trying to heal my son.  So of course I take to the internet with any idea that pops in my head.  I have been trying to eliminate lactose and fructose (which he will be tested for in April also) to see if those are causing problems.  I have started him on digestive enzymes to try to alleviate some burning for him.  I have been investigating possible gall bladder problems.  So far I have not found any magic answer.  Most days we keep the burning as mild as we can.  On occassion we don't.  Saturday was one of those days that the burning got so bad that he was vomitting.  It was a long day as we chased low blood sugars and rising ketones. 

Saturday pushed me to start looking for our gastro's email address.  I wanted direct communication with him without having to wait for an appointment.  I have called the office to let them no of new symptoms and I get the nurse who puts it in the chart and it seems to disappear into a black hole.  So to google I went.  I thought I had found it but after shooting off my email and getting it kicked back I realized that was an old address, from when he was a resident at a local medical center, but not the one that he is at now.  So I did a little thinking, after not finding any other email options, and I came up with a pattern for how our hospital generally creates email addresses...like in this case it is the last name and first letter of first name @ our hospital.com.  So I decided to give it a try.  This was Sunday afternoon.  I waited a while and nothing got kicked back so I was hopeful that I nailed it.

Monday came and I kind of forgot about the email.  But then at about 6pm I got a phone call and who was it on the other end but our gastro!  I was in shock.  It worked!  He spoke with me about my concerns.  He told me to definitely NOT try the hydrocloric acid pills I had bought at the health food store in my desperation to make my son better (that right there is probably what got him to actually call me).  he he  But most importantly, he agreed that we should move the endoscopy up and that his nurse would be calling me to see about getting him scheduled in the OR.  Success!

So while I still haven't heard from the nurse (I was on the phone most of the night with my best friend) I got what I needed.  I need a lot of communication with my doctors.  I have a complicated child.  Now I don't recommend stalking your doctor if it is for something minor.  But in some situations, you need to communicate with each other and I find email to be unintrusive.  I can get my needs/concerns communicated and he/she can answer me when they have a convenient time to do so.  I think everyone wins.