Kennedy Krieger

Monday we had a very informative appointment with Hudson's GI doctor.  First, we discussed the issue of the abdominal migraines.  He said he has three treatments that he resorts to for this problem.  The first, Elavil, Hudson is not eligible to take due to one of his heart conditions.  The second, Periactin, Hudson has had a paradoxical reaction to in the past, extreme irritability and a blood disorder.  The third, Propranolol, is a beta blocker.  The main issue with this drug is that it would lower his heart rate.  His GI said that as long as it was cleared by his mito dr. we could start it and hopefully prevent the abdominal migraines from happening.  His mito dr. gave us the ok and so we'll start it.  Hopefully this will prevent Hudson from having the terrible abdominal migraines without having to resort to traditional migraine medications.

The big news of the appointment was that his GI was so impressed with how awesome he looks from being on the clinical trial drug, very attentive, focused, curious, etc., that he feels now would be a good time to transition into a feeding program.  The issue of an intensive feeding program has been brought up to us before.  Hudson has had multiple feeding therapists in his lifetime, all have said he needs an inpatient feeding therapy.  We discussed it with his mito dr., and at this point, she feels we have nothing to lose by trying.  We don't know why Hudson doesn't eat, but he never has.  He is extremely orally aversive, taking only medical grade formula in a bottle by mouth, and supplemented the rest by G-tube.  He has awful reflux, and I believe this played a major part in his oral aversions, but he has since had two Nissen fundoplications, so the reflux, in theory anyways, is being controlled.

His GI's recommendation was to enroll in an intensive feeding therapy program, either in Cleveland or in Baltimore at the Kennedy Krieger Institute.  We have researched both extensively and feel that KKI is the most promising option.  So Jake and I have decided to try this for Hudson.  We feel that we have to.  If he could eat food it would be life changing for him, socially and nutritionally.  We don't even know if his body can physically tolerate real food, but as his mito dr. said, we won't know unless we try.  The program is intense, 8 weeks of feeding therapy everyday.  Hudson and I would have to move to Baltimore, Maryland.  The GI submitted the recommendation today.  The first step is an initial evaluation in MD, and then beginning the program.  KKI has amazing success rates, and we are so hopeful.  Although the logistics of working this out seems impossible to me, the payoff if it works for Hudson is greater than all the difficulties having our family split up presents.  Please pray for guidance for Jake and I during this process, and for success for Hudson if he gets accepted into the program.