So much has been happening lately that I really want to blog about three things. The first thing I want to write about is an update about Josiah’s eating situation. We went out to the feeding clinic four times last year and always typically have had the same result – an increase in the amounts Josiah was receiving orally in food from about 4oz of the puree – but then as time progressed the amounts would decrease and feeds would become harder. So we have been in a dilemma, do we get a G-Tube (something I have always been against) or do we go back to the clinic for another try. We have tried other therapists over the summer, none have helped at all. feeding has been quite problematic in recent months. Until a glimmer of hope a few weeks ago. Shari managed to get in touch with a good pediatric dietitian – who let us know about a good pediatric GI called Dr. Hyman who had previously practiced at KU Med but was currently practicing at the Children’s Hospital in New Orleans.
Shari emailed Dr. Hyman about Josiah’s condition. Dr. Hyman wrote back quickly saying that the problem was that the GIs at Children’s Mercy in KC didn’t know what they were talking about in trying to treat reflux. He said
“The GI docs you saw at Mercy misled you because they do not realize that ex-premees who have gone through mutiple pain experiences have pain memories and a sensory sensitivity that makes them want to empty their stomachs. “Reflux” is the end result of pain, as the kid pukes to relieve the discomfort assoc\iate with gastric filling. To get your child better, it is necessary to treat neuropathic, chronic pain for 8 weeks to allow desensitization of the hypersensitive pain nerves in the stomach.”
Interesting theory – in fact it would make sense why the “flooding” therapy at Los Altos was not altogether successful. Children’s Mercy had previously said there was nothing physiologically or anatomically wrong with Josiah, which was probably correct to the degree of their knowledge – but that was the problem – if Dr. Hyman is correct there were still some medical complications that could be dealt with. Dr. Hyman and the team at KU Med have a procedure they have done on 10 kids, whereby they put a J tube, bypassing the stomach and they desensitize the stomach for 8 weeks with a pain killer, then they administer a powerful appetite steroid called Megace for 6 weeks. All the kids they have done this on were 100% tube fed and they have had 95% success with 9 out of the 10 kids feeding orally at the end of the process. The 10th kid was getting half feeds from tube and half orally at the end (but also had Cerebral Palsy – so didn’t have the stamina to eat).
We went for a feeding evaluation this week at KU Med with Dr. Ann Davies. They considered us good candidates for the treatment – but with a proviso. All the other kids who have undergone this treatment were 100% G-Tube fed. Josiah is not – this is a little anomalous, thanks to Los Altos and our persistence we still get all of his calories in orally and he is not small (75-90th percentile height and 40-50th percentile weight). This means they are not advocating surgery to get a J-Tube – rather do the whole thing orally. We have an appointment with the GI at Children’s Mercy on December 9th to get the medication prescribed. So despite the fact the solids we are getting in at the moment have decreased to about 10g or less a feed there is some hope on the horizon.