Thursday, September 22, 2011

David's Hirschsprung's Story - Part III

For the beginning of David's journey with Hirschsprung's visit HERE and HERE.

I made the hour long trip with David to Rochester to meet with Dr. Pegoli.  It was a bit overwhelming not knowing where to go and Brian wasn't able to come with me.  After a long wait, we met with the resident and gave her our story and records that I had collected in the previous weeks.  When Dr. Pegoli came in, he brought two other residents and was immediately so much more helpful than we had experienced here in Buffalo.  I told him the whole story and he looked at the records.  I then described to him the treatment that had been recommended by Dr. Glick.  His eyes got a little wide during that part.  He then told me that if we were to come to Strong, his recommended course of action would be the "conservative" approach that is standard care for Hirschsprung's.  First, David would need a surgery to put in a colostomy bag.  This would require a 3-5 day stay in the hospital as well as...a colostomy bag.  The bag would likely be in around 3 months, allowing his distended colon to go back down to normal size.  He described to me how the colon had to shrink back down to its proper size in order to even think about doing the next step - a pull-through surgery.  The pull-through would again involve a 3-5 day stay in the hospital and then an undetermined amount of recovery.  The child after pull-through must learn how to move and control their bowels and depending on the circumstances, that can happen pretty quickly or take years. 

Dr. Pegoli was very patient with my questions and when I asked him what he really thought about Dr. Glick's approach, he very diplomatically told me that he thought it was wrongheaded and ill-advised.  I then asked him what had been on my mind for a while.  If we have been dealing with this for two years already, what's to prevent us from just continuing what we are doing and avoid surgery altogether?  Were there risks to that?  He surprised me by telling me that this, in fact, was a valid option!  As long as we were diligent about making sure he stayed regular, was growing and developing normally, and we watched for any signs of colitis, that doing nothing (besides active bowel management through medication) was a valid option!  Everything we had read online and in Hirschsprung's literature had led us to believe that surgery was the ONLY treatment for Hirschsprung's children.  It didn't make sense to us since we had been living with it for so long and we had heard stories of people diagnosed in their teens or adulthood.  Obviously, in some cases it WAS possible to live with it but that wasn't the mainstream way of treating it in the medical world.  I left that appointment with a lot to think and pray about.  Should we pursue a surgical solution that could possibly relieve David of the immediate symptoms of Hirschsprung's for good, though involving risk and a great deal of struggle for this coming year?  Or do we continue to seek a different solution and try to avoid surgery altogether?

Brian and I have talked and prayed over it a lot.  We continued to research and learn about Hirschsprung's and debate whether surgery was what we wanted to do.  I learned through various message boards that pull-through surgery is not the guarantee cure-all that is presented on many medical information sites.  I joined one particular message board that contained a great many parents of Hirschsprung's children who were STILL dealing with issues after surgery.  And some of these issues are bad.  Some of the children are completely incontinent.  Some still cannot go on their own and are on consistent medications.  Some have had repeated bouts with enterocolitis (meaning lengthy hospital stays).  Some have had the surgery repeated two or three times.  Those stories have been very eye-opening showing me that by simply pursuing the surgery, we were not guaranteed to have a symptom-free child in the end.  In fact, what we could end up with is a little boy with struggles and symptoms WORSE than what we were already dealing with.  Was it worth the risk to us?  Did the benefits and possible cure of what we were dealing with outweigh not only the inherent risks of surgery but the risks of even worse complications arising as a result of the surgery?

In the end, we have decided to not pursue the surgical treatment for now.  For us, we cannot justify the risks of surgery for the *possible* benefits.  We had great success switching David to an over-the-counter medicine that keeps him going on a regular basis (polyethylene glycol, a.k.a. Miralax).  From what I can gather, this medication is neither habit-forming nor detrimental to any other bodily system.  (Update 5/2017: I've since learned that there is a growing concern of possible neurological and behavioral side effects with the use of Miralax in some children. I still think we made the best choice but I want anyone reading this to know the concern is out there.) In our view, while having our child on medication for the foreseeable future is NOT what we want for our child at all, the risks of surgery and the possible lifetime complications are far worse.  If it could be guaranteed that surgery would work and David would be Hirschsprung's-free, it would be a different story.  But it's not and so we have to make the best decision we can with the circumstances we have.  We still have hope that somehow, some way he will be healed of this and live a normal life.  For now, we are so grateful that his condition is not worse than it is.  And, oddly enough, we are grateful that things for the most part were diagnosed and handled the way they were.  While these past two plus years have been hard ones for David and us, there is the possibility that an earlier diagnosis would have led to a surgery that could have complicated his condition more. 

I have learned so much about this disease and have developed a lot of ideas about its diagnosis and treatment.  I am convinced that breastfeeding on demand from the beginning and for over two years made all the difference for his digestive tract, diagnosis, and overall health.  That combined with the bacterial and digestive benefits of raw milk I believe have been the difference between a relatively normal life for our little guy and his first years of life being wrought with recurring enterocolitis, hospital visits and the resulting possibly lifetime complications.  I pray that he continues in health and that this struggle we have dealt with will somehow bear good fruit for him.  I also pray that if anyone does have similar issues with their own child they can be as informed as possible when making such important decisions.  Please feel free to contact me if you are in that position or would like more information on our little family's journey with Hirschsprung's.





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2 comments:

  1. Your sons story sounds almost identical to my two year old daughters. We have not received a diagnosis of Hirschprungs but have felt this from the beginning but same as you we've been told there is no possibility. Afte reading your story I am going to insist they do a biopsy at her next apt. We are also doing a half dose of Miralax daily and that has helped her with having a daily stool. With all I've read about Hirschprungs I just kept telling myself I was wrong because how could it be that serious but Miralax was working. I also breastfed until she was two. I've just stopped a few months ago. Thank you for sharing your story and God Bess you on your journey ahead.

    ReplyDelete
    Replies
    1. That does sound familiar! I hope you can get a definitive diagnosis soon. It's so hard when you just don't know what's going on. Please don't hesitate to shoot me an email if I can help at all.

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