Starting now!

Well here we are. At the point of the new diet! Just to recap Kale was born with Chronic Kidney Disease.  He was born with Stage 2 Kidney disease and 5 years later we are still sitting at Stage 2 (we are not complaining about that though)!  Kale has never had kidney, bladder, urinary tract infections as we were told he would.  To go along with the Kidney disease he also has Grade 5 reflux and high blood pressure (common often among kidney patients).  Kale's meds have been changed throughout his growth but never too much, we have really been lucky.  He don't often have bad lab results or much of a change on his ultrasounds. Until now.

The last day of January 2013 we had our first appointment with the Endocrinologist (growth Dr.) at Children's Mercy (the Wichita site).  We have been told it is very common for kidney patients to be on growth hormones. Erin and I were not a fan of the idea but we went to the appointment for information and information is what we got!!  After the Dr. ordered a set of labs and x-rays we found out that Kale's bones are about 2 years and 3 months behind (he is 5 and his bones think he is 3).  The labs also showed an elevated PTH (parathyroid hormone) level. At the time of this appointment his nephrologist (kidney Dr.) was not there so no major issues with his were brought up at the time. Dr. Spade (the endocrine Dr.) informed us that she recommends starting Kale on the Growth hormone as soon as possible. Her recommendation of dosage was to increase over the next 10 years.  She would start at a very minimal level and as he grew his dosage would increase.  He was take a shot in the leg 6 out of 7 days a week.  YIKES! Talk about overwhelming news to hear! We knew Kale was much smaller than most kids in his class but not so much he needed 3120 SHOTS over the next decade!

After leaving the Dr.'s office we discussed our fears of the Growth Hormones. Some of the side effects that are possible included; ear infection, abdominal pain or bloating, changes in vision, headache, nausea and vomiting, skin rash or itching, carpal tunnel syndrome,  joint pain, muscle pain, fatigue and swelling of hands, feet or lower legs. More serious side effects included:  development of diabetes; abnormal growth of bones and internal organs such as the heart, kidneys and liver; hardening of the arteries, swelling in the brain and high blood pressure. Uhhh that's kinda a lot and kinda serious to say the least! So off we went to get more information and opinions.  We found a Chiropractor in town who is an enzyme specialist in town.  Although she hasn't actually treated Kale she has been a wealth of knowledge to us.  She suggests for his growth we check out his ability to take a zinc supplement. (which by the way we found out today he will be able to start taking, as soon as I can find it in stores around here). Zinc is a known factor that aids in growth!  Dr. Lackey (the Chiropractor) also suggested we check out some sites and links one of which was Dr. Amy Yasko (dramyyasko.com) This is a genetic testing site that we are also considering.  If we can change Kale's growth through diet we are definitely on board with that.

Now I know I jumped around in there a little but I tend to do that so hang on we are going to do it again! Fast forward to April 2013 and we had a visit (regularly scheduled check-up) with the Nephrologist (Dr. Stuart-Higenfield).  She ordered her standard panel of labs, which at this point I am convinced is just one of everything!  When we got the results of those labs (partnered with the results from his Jan labs) she decided that his PTH levels were a major concern and that his phosphorus levels were getting too high. 

At this point Kale's PTH was 112 (should be below 72) and his Phosphorus was at 6.3 (6.5 is high).  She put in a request to adjust one of his meds. Gave us a Rx for iron pills (he is on liquid prior to this), adjusted his Calcitriol and ordered us to follow the dietary suggestions of Jessica (Kale's Renal Dietician).

Jessica and I played phone tag for the last half of last week so she just stuck her recommendations into the mail.  We received those in the mail on Saturday (April 22, 2013) to view the documents click on the link: https://docs.google.com/file/d/1AX59LtM_RPJvZDzTStGXe8G0mERtwar4FScKE5TaTJC1TfvjF9iPUbNaGX0C/edit?usp=sharing

Although, we knew the diet was going to change we really had no idea how much.  Kale has been placed on a very traditional "Kidney Diet" although we don't have ALL the restrictions of a patient that may be receiving dialysis he does have the protein and phosphorus restrictions at this time and the rest will probably come in the near future.