Sunday, 23 September 2012
A Bunch Of Zebras - UPDATE
On August 27th I blogged about the appointment that Maxwell had with our GI doctor at MUMC during which the decision was made that Max's file would be sent to Sick Kids Hospital for a second opinion.
I was told at that time not to expect to hear from anyone anytime soon because the doctor had tested for everything and there really wasn't anything that a new GI Doctor could do for us ( A Bunch Of Zebra's Blog Entry)
Imagine my surprise when twenty-three days later Sick Kids calls and wants to see Maxwell the following day!
My Mom came along since she was on vacation and together the three of us navigated the Go Bus to Toronto where we scarfed down lunch while defending ourselves from pigeons with ninja like reflexes and walked the 30 minutes to the hospital from Union Station.
Sick Kids is a great hospital but I find that it's physical appearance lacks the "comfort" that MUMC seems to have, my thought each time we have been there is that it really needs a makeover :)
After a lengthy wait we were seen by the doctor who came across as nice but very professional.
We discussed everything stemming right back to Max's conception and it actually felt like she was really listening.
The MUMC GI clinic didn't send over the complete file, only what he felt was relevant and even that wasn't the actual detailed paperwork but merely summaries of them.
The doctor excused herself to her office for a short while and came back into the room with a stack of papers, the first words out of her mouth were "I don't want you to be mad but......." - Hmm this cant be good.
Back in December during Max's hospital stay his abdominal ultrasound showed that he had enlarged lymph nodes, I remember this because I had a bit of a panic attack that another of my children had lymphoma.
They reassured me that it was not lymphoma but that was the end of the lymph node discussion. What they didn't tell me is that enlarged lymph nodes in the abdomen is often a symptom of a bowel disease and at the very least should have been followed up with a repeat ultrasound.
The doctor said that all of Maxwell's symptoms sounded like celiac but the paperwork from the MUMC GI Dr said the test was negative so she decided to look at the actual detailed report.... this is where my blood pressure began to rise.
Apparently when a biopsy is done of the intestine they are supposed to take 6-8+ samples from different areas of the tract as its not likely that all of the intestine would be damaged or inflamed. What we discovered is that when they did Maxwell's biopsy they only took two very tiny samples from areas close in proximity because the tract didn't "look" damaged.
If we look back to Max's life at that point its almost certain that looks alone would be deceiving. He was only two years old and had been breast fed for his entire first year, once solids were introduced he vomited more food then he digested.
Pretty much in a nut shell the biopsy to confirm or exclude Celiac Disease cant be considered as the test was done incorrectly.
Now because of Max's heart condition its not safe to repeat the test until the hole is repaired and he can be safely sedated.
We have a beginning plan of action which includes blood work, acid reducing medication to hopefully help with the vomiting and the burning that frequent bathroom trips can cause and we return in January for a check up.
I am tempted to pay a visit to the GI Dr at MUMC and educate him on how poorly he tested for "everything" but I wont..... I will maturely just be thankful that yet again he sent us to a doctor that caught his errors and set us on the right path.