While I love and believe in the diet, I am having a heck of a time finding a complete team to help monitor it!
1. Kayli was admitted into the hospital (to start) and was given an adult ketogenic team whereas she is only 3 years old and should have been placed with a pediatric team.
2. The adult dietitian was not given a nurse to help monitor Kayli (and the neurologist only monitors seizures...she signs orders that the dietitian gives). 3. My daughter was slowing dehydrating because she was not given appropriate fluid intake guidance.
4. The incomplete Keto team did not guide us (even when I asked of the complications the diet can cause) with a surgery pre-op fasting and Kayli went into de-compensated heart failure, and severe dehydration as a result.
5. The quick fix was to push more fluids, which we just found out pushed Kayli into bladder retention (it wore out her bladder muscles and now she can't pee).
6. I had to beg to get my daughter into the pediatric clinic and then was told by the scheduler that only the neurologist would be there...there is no real pediatric clinic ???
7. I called the founder of the Charlie Foundation (Charlie's dad) and he connected me with Beth (the CF expert dietitian). She happened to call me back when I was on the phone with the hospital and suggested previous night admission for the next surgery, so Kayli could get IV fluids while fasting for surgery prep., a GREAT solution!! :D She tried connecting us with help but was only able to get the adult dietitian involved...bless her (adult dietitian) heart, but she admittedly does not know what to do at this point and does not have the nursing support to help Kayli.
The adult dietitian contacted the pediatric clinic (apparantly there IS one, and the scheduler has no idea it exists???). The dietitians talked and it was agreed that the pediatric dietitian would be involved. The day of the appt, I accidentally went to the wrong hospital (my auto pilot took me to the hospital we visited 3 times last week instead of the hospital we were supposed to go to for the keto appt...please tell me this has happened to someone else! lol). We were 30 min late, and the neuro came out to the waiting room, reaming me out about being late and said she can't see Kayli because we were 1/2 hour late...I can either wait all day, or come back at the end of clinic. I told her that I take full responsibility for being late, and it's ok...Kayli's seizures are fine, we just need to see the dietitian at the scheduled time (an hour later). Kayli was not able to stay to the end of the day because we did not prepare for that:
1. Kayli did not have her medications, nor food for the entire day
2. Kayli's nurse shift change was during the time the dr wanted us to come back/stay until
3. I have my boys at home who need me too and I had not planned the day to stay into the evening.
The dr told me we aren't allowed to see the dietitian because we didn't see the neuro (and she would not see us until after clinic). An argument ensued (in the waiting room!), and I told the dr how desperate I was to talk with the dietitian because Beth at the Charlie Foundation and I agreed Kayli should not be loosing weight like she has...she is starving! Kayli has lost 5+ lbs in the last 2 weeks, likely because she is only getting 270 calories a day. The neuro told me that if I am concerned about her loosing the weight, I need to take my daughter to the ER! ???? The ER professionals are not trained to manage the ketogenic diet....
So...Rush university hospital's keto teams, with their lack of organized support, have repeatedly harmed my daughter while on this diet, and are now refusing to help her. I have lost faith in their practice with the Ketogenic diet...Kayli deserves better treatments and monitoring!
The only 2 other clinics in IL are at Children's and CDH...both who have made it very clear that my daughter is not welcome there. She is refused treatments/given DNRs without our consent because she has Trisomy 18. The hopsitals claim their futility policy on Kayli, and make private agreements to give Kayli slow code. Many dr's and nurses in their PICUs (pediatric intensive care units) have blatantly told us that Kayli needs to go home to die, and we need to stop feeding her to make her die. Kayli (because of her Trisomy 18 diagnosis) is not welcome to receive treatments in their care. In time, I will write another blog, of hospital futility policies, and slow codes.
So... on my own, I am trying to slightly increase my daughter's calorie intake but I fear it is taking her out of Ketosis. My daughter's seizures have greatly decreased, but I may have to take her off the diet because I cannot find a competent team to monitor her while on it! And... it is not safe to take her off the diet without help (weaning). We are stuck for now. My daughter has faced heart failure and is now facing surgery for the bladder issues, and was starving all because of the lack of help while on the ketogenic diet.
Yesterday, according to Kayli's day nurse, her heart stopped/slowed twice so I called the cardiologist's office. They are both out of town for the weekend, and the on call service is an out service from CDH...Kayli is not welcome in the CDH PICU. So I called Kayli's PCP and he is out of town for the weekend, with only a np to cover the weekend shifts. Fortunately, I am able to get the BNP (not BMP) order sent to our local hospital (it tells what level of heart failure she is in). Our weekend back up plan is to call 911 and have Kayli taken to another local (and respected) hospital for cardiac care while her specialists are out of town for the weekend. Fortunately, since the 3 heart rate drops, Kayli's heart rate has been consistently stable. :D
Kayli's prescribed diet is: 28 grams Ketocal, 7 grams Beneprotein, 5ml of 100% MCT oil with 1400 cc's fluids daily. She was getting 1800 cc's of fluid until we realized Kayli was in bladder failure/retention. For the last 2 days, I increased her Ketocal to 29 grams (up 1 gram) and her Beneprotein to 9 grams (up 2 grams) and kept the fluids and MCT oil the same which stopped her weight loss, but minimally dropped her ketone level (she was only at 5 previous to this change and now is somewhere between negative and 5). Today, I put her back on the 28/7 formulation, but increased her MCT oil to 15ml (increased her calories by 67). Kayli weighs 27 lbs (the diet was set at 31 lbs). Disclaimer: I do NOT recommend anyone to follow or attempt to follow Kayli's Ketogenic diet restrictions. Each person metabolizes differently, and has health conditions unique to them...so their diet should also be as unique as they are.
As of last night, I have spoken with a local dietitian (where Kayli will be going to when they are ready for her) and she is aware of Kayli's current diet changes I made. We should hear more about what the local Keto team can do for Kayli, on Monday. I agree, it's best to take her off if we don't have a supportive team....but it takes another inpatient to wean her off (and again...a support team to guide us). This is not the weekend to take her off because we have no support to do so. Hubby and I agreed that although her seizures are so much better while on the diet, it may be causing too much on her other body systems (without the support for the Keto diet). If we do not get any solutions next week, we will be asking for support in getting her off the diet until a better support team is formed for her. Kayli's epilepsy specialist has mentioned his dietitian at U of C is trained and has experience in the Keto diet. After this weekend, when all Kayli's specialists are available, we will be further contemplating 1. going to U of C with a new team 2. going through the local hospital with outside help (this local hospital will be ready to take on Kayli in a couple of months) 3. taking Kayli off the diet until the local hospital is ready to take on Kayli without outside help.
It has been a nerve racking couple of days, but Kayli had a great night (although she has reversed her sleep from nights to days! lol). She is stable and doing well. With the adjustments I have made with her diet (disclaimer: I do NOT recommend anyone making adaptions to the Ketogenic diet on their own), Kayli's ketone levels are finally increasing, and she no longer appears tired or lethargic. :D
She has an appt the week after next, for an Urodynamics test to help figure out what is wrong with her bladder output. Her kidneys have already been tested (ultrasound and BMSA) and all looks great with her kidneys and function! :D
This post was not intended to bash any particular institution, nor person. It was intended to update Kayli's followers, and tell of her personal journey on the Ketogenic diet.