We finally got an appointment with the specialist. As I hopefully mentioned before (not sure what I have posted at this point or not) there are only a handful in the country who know what rumination syndrome is and treat it. I have a feeling our GI doctor does not believe in rumination syndrome. She kindly nods her head in a patronizing way whenever I talk about how my son has started ruminating again.
The specialist is a psychiatrist who specializes in pediatric feeding disorders. The evaluation takes all day long (from 10AM till 4:30PM) and costs $1500. Up front. And no, insurance does not cover the cost. And no, the plan my husband's work has chosen will not allow us to do good faith (meaning that because she is the ONLY specialist in the area, the insurance company will pay as if it was in network). I am thinking of setting up a donation button for those who wish to help with medical costs (in case any rich person just happens to read this).
Of course caring for my son is priceless. I just pray we do not have to get any deeper in debt in order to do it.
(This is the first up to date post, so this post and all following will be accurately dated as to our journey - all previous dates are just playing catch up telling our story.)
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http://www.anred.com/rum.html
ReplyDeleteThis is one site and I will post another.
Big hug.
Get on line doing a Google search.
Contact children's hospitals. In our area we have a Children's rehab service for special diagnostic problems
http://www.mamashealth.com/eat/rum.asp
ReplyDeletehttp://pediatrics.aappublications.org/cgi/content/full/111/1/158
http://ajpgi.physiology.org/cgi/content/full/275/2/G314
http://archpedi.ama-assn.org/cgi/content/abstract/133/3/266
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1572-0241.2006.00801.x?cookieSet=1&journalCode=ajg
Check these out perhaps you have, contact these sites or University's to see what they have to offer. It may be cheaper to travel to them or to enter a study. Some studies offer full compensation.
All My hope is this that you do not buy into it being your fault of r blaming that the more you are educated and those around you are too the more help baby blue will get. Dear Heart the doctors in ignorance have to "blame" something or some one when the have no answer in their book of life so instead of admitting ignorance they tend to blame that is not about YOU! I just want to lift you up to the feet that must stand and hold fast. Don't let the enemy push you off your standing sweet heart
ReplyDeletePaula, I want to share with you my experience with my son and Failure to Thrive. He was born in May 2003 weighing 11 lbs. When he was 5 weeks old he stopped eating. When he was 3 months old, he was losing weight and was in and out of the hospital with us trying to figure out "WHY!" At 7 months old he had a G-Tube place and was both bottle fed and G-Tube fed until he was a little over 4 years old.
ReplyDeleteWe had him tested numerous times for different disorders...saw numerous doctors and wonderful occupational therapists that specialized in feeding/eating disorders.
We finally visited The Marcus Institute in Atlanta, GA. It was our "last resort"....after visiting there, I was determined to try some more before we went through their in-house program.
Praise God, because my son (Button Boy) had his G-tube removed about 10 months ago...and eats as well as we can expect. He had gained 2 lbs this fall, but within the first 3 days of having the flu this past Feb -- lost those 2 lbs.
I would recommend, even though you are in Colorado, for you to look into the Marcus Institute
http://www.marcus.org/index.html. Their program is amazing and they work miracles.
I will be praying for you and JJ...I know how difficult it is to watch your baby have feeding problems when you are doing everything in your power to get him to eat and gain weight. Please keep my email address, and email me...I would love to give you as many details about anything that I can.
Emily Jones
Montgomery, AL