After her annual IPP & IEP meetings, we had our neurological follow-up in late January. Because I felt Raquel's seizure activity had decreased once I somewhat implemented the diet, I was pretty sure Dr. Mower would start weaning Banzel to some degree. Not the case. Because the dietician and I have not had consistent communication, he could not tell whether or not the diet had anything to do with fewer seizures, or if it was because of him adding the additional anti-convulsant. Got to say, I was a bit disappointed. I knew I wasn't following the diet 100%, but thought I was doing enough. But when I told him the date of her last seizure and he asked what her ketone levels were that day - while typing the info into the computer system - and I had no idea what it was, I knew this wasn't headed in the right direction.
So, we kept everything as is medication wise and scheduled another neuro follow-up for the end of June. This gives me the month of March to reach Vanessa and to consistently get the diet going as it should be. Then she'll have 3 full months on the diet before he sees her again. I'm telling you right now, the appointment at the end of June will be much different than the last one. I will walk in to his office with her "Keto" binder in hand, and when I'm asked specific questions, dates, times, levels, etc., I'll be able to show him. Plus, he'll be getting input from the nutritionist as well.
Speaking of the M.I.A. nutritionist, Vanessa... As I posted before, we had the initial 2 1/2 hour consultation where she went over everything in tremendous detail, stressed the importance of communication, and that if we weren't willing to commit to the diet 100%, not to waste her time. I received week 1 meal suggestions, had responded with questions via email and voicemail, and had never heard back from her. This was the point where I joined my on-line Keto Support Group and have been pretty much winging it ever since. After the follow-up with Dr. Mower, I realized that time was ticking, and that I really needed to either make this work with Vanessa, or locate another keto nutritionist, so I decided to do both. I asked for referrals - was even willing to move her file up to Orange County or Los Angeles if needed, just to get things going.
I was asked by the Orange County neuro/nutrition division to have paperwork faxed over to them, and when I called Vanessa's office, she answered the phone. According to her, she never got any of my emails/voicemails and didn't feel I was ready to commit to the program, as many aren't. When I told her how many messages I've left for her, she was very surprised and apologetic. We talked in great length, she answered all my questions (this was on a Friday), and even called me at the end of day before she left to see if I needed any additional support. I diligently kept track of the food diary/keto testing throughout the weekend, then emailed my journal log to her on Monday as she requested so she could see how we were doing and make some suggestions. My emails were bounced back as undeliverable. Voicemails were not returned. Here we go again. Not feeling the love.
Then Raquel got sick, and that involved a lot more clarification because you have to really do specific things diet wise when your keto kid gets sick. I had a sheet from the initial meeting about what to do, and I tried to follow that the best I could, but when a kid gets a fever, you need to give them Tylenol or something, which she cannot have on the diet. Remember - no liquid meds of any kind. She didn't want to eat, I was trying to force liquids in her (no juice, no pedialyte), and the last thing Raquel wanted to drink was diet soda. The diet pretty much went out the window at this point because I was desperate to get anything in her.
A couple more days went by and, for the heck of it, I called Vanessa to leave another message. Again, she answered the phone and was concerned about emails/voicemails not reaching her. I faxed her the journal log and she made some suggestions/recommendations. She also called me the other night at 7:45pm, to check in and see how Raquel was feeling. I have a meeting with her on March 14th. After this meeting, I will need to weigh all food, not ballpark it, and it is going to get a lot more strict. Did I mention how I'm not a huge fan of math? Sigh... But one thing I am doing for this meeting is taking pictures of food labels of her favorite items or things I'm questioning whether or not she can have. I'll be able to show Vanessa, watch her do some calculations, and then go from there. It will be nice not playing the guessing game in this respect.
Besides that drama, things are going pretty well. I love having her home schooled with Miss Crystal, and she seems to be responding and making improvements. She still isn't as vocal as I had hoped, but she's trying. She definitely has different pitches and I can tell when she's yelling at me, excited, impatient. Behaviors are pretty much non-existent, except for what I would consider is typical for any toddler.
Dr. Mower put in a referral for her to be evaluated by an orthopedic doctor because she has flat feet. She may need special shoes or braces. We see this doctor in April. She is also being evaluated by a physical therapist because of her low muscle tone. That initial evalation is in April as well, and then we will be starting up PT sessions through Children's Hospital. I also submitted paperwork to have her re-evaluated by a speech therapist because we would like her to have speech therapy as well. All of this will be done in North County so we won't have to go to the hospital.
Looking forward to meeting with Vanessa and seeing what recommendations she has, then going from there.
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