I finally get a call from the super busy appointment scheduler after about two weeks of trying to secure just one appointment.
I need the appointment for Christian with a neurologist in Phoenix in order start the Ketogenic Diet. It's a formality. And because they have to evaluate Christian to make sure he's a candidate and that he's tried other things that were unsuccessful.
I finally got the appointment...in December...December 14th...Lola's 1st birthday...wait, it gets better.
Not only is the soonest appointment available on my baby daughter's 1st birthday, but the only epileptologist available in the shortest amount of time is THE doctor. That's right, the one and only doctor that our neuro in Tucson suggested we NOT make an appointment with because "we wouldn't mesh well together." No other doctor is available for a single, frickin' consult until January, February, March, or April.
In addition to that awesome news, I was also informed that contrary to what I had been told, they would need to admit Christian to the hospital to start the diet.
Seriously?
I stood in my kitchen a little dumbfounded. Listed above are all things that can be worked around. It was just the sudden barrage of information completely opposite of what I had envisioned. I had to tell the scheduler I'd call her back.
I didn't even know what to say. I just felt that it was all wrong. I'm a really big believer in signs if you haven't already guessed, and all these signs coming my way at the same time in the same conversation was crazy overwhelming.
So I sat down and thought. My dear husband tries really hard to talk me out of my worry, but today I wasn't even hearing a word he said because I was trying to process what to do next. Just go ahead with the appointment with the doctor, the only doctor I was told NOT to pursue?
After processing, I got up off the couch and looked at the myketocal.com website for the list to the other practice I had heard about. The other practice of pediatric neurologists just happened to be the same group along with the same dietitian the little girl I met last Sunday at church goes to. I called, got through to the scheduler right away, and we have an appointment in three weeks for the consult. I spoke with the dietitian and she assured me we wouldn't have to be admitted to the hospital to begin the diet.
Crisis averted.
I know it seems like really small facts and changes of plans that can be worked around, but there were just too many things at the same time not lining up how we had planned for me to continue with scheduling the appointment. This is a big deal and it has to be right.
November 17th, here we come!
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3 comments:
I'm really glad you got in to another doctor sooner. I thought of you and Christian yesterday. We get a 3x year publication from the Children's Hospital here in Pittsburgh and there was a section all about the ketogenic diet and that they have a Ketogenic Diet Clinic right there at the hospital. http://www.chp.edu/CHP/Ketogenic+Diet
I hope you get all the support you need! Keep fighting!
Which Neurologist in Phoenix were you going to see?
Santana was in for 5 days to start the diet. Going in ketosis could be very toxic if not done right. Santana had to have his ketosis levels checked every so often throughout the day and blood pressure and if needed they would give him a little juice cause your blood sugar can drop dangerously. That is why they admit you. But Santana is on a TON of ridiculous medications so it may have been more of a dangerous situation for him. Glad you found someone to do it out of a hospital! That is impressive. I don't think I know one parent who didn't get admitted. But they will give you keto sticks and you can monitor it at home. It is like doing the REAL atkins diet and you "go" on the stick to see if you are in ketosis. I really really really hope this helps him! I think Santana FINALLY outgrew his seizures. Or they are just being controlled really well.
You are doing an awesome Job! Christian is just too cute for words! Oh... and I understand not wanting to go on your daughters birthday! I spent one of Jetts in the hospital and Tyree's second. It is hard.
PS... YOU SHOULD HAVE SIGNED UP TO GO TO THE PONDS Retreat!
Lindsey -
The neurologist we were first trying to get in with was the St. Joe's/Barrows group. We couldn't get an appointment so I made one with Phx Childrens'.
I guess that's how they do it now - all outpatient unless the child is fragile. I had heard this and then it was confirmed by the dieticians - Katie Call will be ours. But I'm glad you mentioned all those things because there is a 2 hour education appointment I'll need to attend and I'll ask them about all that stuff you mentioned.
I am so happy to hear Santana has been seizure free! That is awesome news and I hope to report the same for Christian very soon!
I couldn't go to PONDS in the pines this year. :( Although, I am tempted. Lola can't go without me for longer than a few hours at this point. Crossing my fingers it can happen next year but I can't wait to hear the details and I'm so glad you get to go! It sounds beautiful!
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