See Video of CPB….
After suffering for 6 years from the effects of her pancreatitis attacts and the severe pain now closing in on her dayily along with many other horrible symptoms like being out of school and having no quality of life I approached the “Sickkids Pain team” and asked about a Celiac Plexus Block.
It began like this; at one of our quarterly meetings with the (7) pain team members at Sickkids, none of them her pancreatitis Doctor – (remember the pain team does not talk medical and medical side will not deal with pain ((they even have a graph to lay it out for you)) which in my opinion is a major flaw in the SK system) I voiced my thoughts and some new findings.
By now I began searching for other people and anyone who might help us. I had been madly looking up ANY possibilities or procedures that could potential help Hayley’s pain. When I tabled my findings, which consisted of Celiac Plexus Block, Pewstow or Pancreactomy I was looked at as if I had (3) heads. These where (3) procedures that were NEVER brought to my attention as options for Hayley. I would have liked to hear it from them even if they did not think them useful they could have mentioned it. Instead as always I was left to fend for ourselves grasping at any straw that would not break. This is a frightening way to navigate through an already challenging medical system.
I was advised as follows, “while we would never discuss or offer a Pewstow or Pancreactomy for Hayley” they would go away and amongst themselves and discuss the potential of doing a CPB. I was told Sickkids had never done a CPB on a child of 12 year old before thus making Hayley the first. Now some “hope” had been restored but it was short-lived.
On April 12th 2012 – a CPB was booked for Hayley. They said it was a trial only and it may work, may not work and covered every scenario in that arena and then stated that they would be using a local anesthetic only. After the procedure Hayley said she had no pain. What started out as “hope” for Hayley was quickly taken away. Logic seemed to be thrown out the window by the doctors and the pain team.
The situation went like this; right after the “block” Hayley said she had no pain but how could you possibly be sure based on the following…. The 1st Celiac Plexus Block was scheduled to be done April 11, 2012. Unfortunately Hayley had been taken to Sickkids emergency department two weeks prior (March 27th) because her pain was so unmanageable. She was admitted. They, being GI – Dr. Griffith & Dr. Durie decided to put Hayley on a TPN feed (see TPN pages). This went on for the duration of her 15 day stay up until and including the day of and day after her Celiac Plexus Block. Hayley was still on total bowel rest when they did this first block. They said they only used a local anesthetic.
Over that two week period I documented everything and noted clearly that Hayley’s pain and the use of her pain medications had begun to decrease including the spikes and increased attacks that she was getting at home around the clock. Her mobility and spirits began to increase. Clearly something was happening for the good. I never expected her to be completely pain free and she was not but she had made great strides in that 14 days pre-block. It was Dr. Durie who thought this pain reduction should have happened quicker and the TPN made no difference. I don’t know I am a mother clinging to doctors and hope now. I have always said part of her problem is food itself. Perhaps (2) issues now. Pancreatitis and damage to muscle and nerves in the area. Doctor felt the TPN was of no significance. I saw a difference with my own eyes and so did Hayley. Not to mention Sickkids has stated that they have NEVER had a child with Hayley’s condition so who can predict how long it might take for TPN to have an affect considering all she’s been through, the length of time and severity of pain? The fact is that the pain “seemingly” began to decrease. They have no case studies, nothing at all to offer me in the way of statistics. It is one Doctors opinion whose semi-retired voice rang out to all involved so now I have nowhere to turn. This definitely influenced all the other medical players right from the start. I know this to be true and there is nothing I can do because in my opinion Sickkids is the “crown jewel” of children’s hospitals, unless you have a RARE illness. No path is cut out for kids like Hayley with Chronic Pancreatitis. She is a budget constraint, a time consumption, a perplexing case study and they pushed her to the so called pain team as fast as he could and never looked back.
On that note I would like to say that due to Hayley’s unfortunate circumstances I had the experience of staying at Sickkids with her way too often. Something that is obvious is that SK are a highly funded children’s hospital and one would think that someone like Hayley walking in there with a rare situation should not cause them so much disruption to the flow but she did. Everything was a fight and complicated regarding treatment, meds, procedures and anything pointing back to her medical situation. Lots of toys, clowns and a state of the art setting for this circus we are in but no help for Hayley.
They tried to stick a square peg into a round hole and hope parents (like me) will buy into it all the theories. In Hayley’s case they don’t really know and sadly they will not admit it. At the end of the two weeks on TPN the pain was still lingering slightly however it had settled quite a bit probably 60-75%. This was all prior to the 1st block which was done 12 hours before she was discharged from the hospital April 13, 2012. Looking at this situation with my with my own “uneducated” opinion, I feel that shutting down the pancreas was a big help for stopping the spikes of pain and the block may not have contributed too much at all. She was back in full pain within 3 days of the block. Hayley had one meal at the hospital before she was shipped out, 12 hours post procedure. They cut her loose and the pain returned. What really helped??? Using a local anesthetic would not have offered much more in the way of time regardless but I don’t believe the 1st block can be fairly measured. How could we know if they say it may work, it may not work, you need a few to kick it into gear and so on…
After starting back on food and so on up went the pain or perhaps a local was never enough. Who could possible know. I don’t agree with guessing but one things for sure after 6+ years of suffering she was back where she started again.
Each time there is another failed procedure it rips out another piece of her soul and cements into her mind that she is destined to live this way!
