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New Neurologist
They say there is a first time for everything, but I never imagined there would be a time when we would be asked to leave a doctor’s practice. Yeah, this really happened. If you read the previous post, you know that Stacy and James’ neuro had a bit of an argument about putting James on medical marijuana…we wanted to try it, but the doc refused to sign the paperwork required by the state of Illinois. In the end we decided that we would give Charlotte’s Web another try. Shortly after that appointment, Stacy e-mailed the neuro with a link to the CBD oil to confirm that this was the one that he wanted us to try. His response was as follows (obviously from one of his assistants):
“Hi Stacy, Dr. [Redacted] has received your above link, discussed with colleagues, and has reviewed current published scholarly journal articles on this topic. His feedback is “There is no scientific evidence to support usage of Medical marijuana in children with epilepsy. I have spoken to many of my colleagues and nobody can support it. The American Board of Pediatric oppose using it. Therefore my position is clear “I’m not prescribing or using It.” I think it is better if the family transfer care to other Pediatric neurologists at Lutheran General, Loyola Uni, Lurie Children , UIC or Uni of Chicago if you would like a second opinion for medical management with CBD oil”
What the hell? First of all, Stacy’s e-mail was just looking for confirmation that the CBD oil she was looking to purchase was the correct one. She made no mention about medical marijuana, so why did his reply even mention it? Second of all, Stacy and I were both at the appointment when we agreed to give Charlotte’s Web CBD oil another shot, now he is telling us to get a second opinion if we want to use CBD oil?
Stacy and I were both dumbfounded by the doc’s e-mail. Did he kick us out of his practice? Well, shit. You put up a fight for what you think is the best for your child and get smacked in the face. We found ourselves in a situation where James still had uncontrollable seizures and he was no longer under the care of a neurologist.
Stacy asked for recommendations in her various special needs groups, did some calling around, and was able to get an appointment with a neuro this past Wednesday down at Rush University Medical Center in Chicago. I’ll be honest, I was a bit hesitant on taking James to a neuro in the city. I hate crowds and traffic. And if this was going to be James’ new neurologist, that would mean that I would have to take off work and go to every one of his appointments, because I would not let Stacy take James down there by herself.
My feelings completely changed once we met this neurologist. She was very thorough and examined James from head to toe. She had a lot of ideas and questioned why such and such hadn’t been done in the past, like using baclofen for his muscle spasticity (stiffness). This was something that was never brought up in the past.
We were both very pleased with this neuro and will go back to see her in December to discuss medications, hemp oil, and the possibility of James joining a study she is doing for a medication. In the meantime, we have started James back on Charlotte’s Web at a slightly lower dose than he was on when he first started taking it back in June.
SUDEP Awareness Day
Last Sunday was SUDEP Awareness Day. SUDEP stands for Sudden Unexplained Death in EPilepsy. As parents of a child with uncontrolled epilepsy, Stacy and I are aware of this every day. Being part of this “community”, we have known way too many little ones that have been taken this way. It’s a fear that Stacy and I have in the back of our minds every night that we put James to bed. Will he make it through the night?
For those of you that do not have a child with epilepsy, consider yourselves lucky. For those of you with epilepsy or those caring for someone with it, SUDEP.org has a few tips to help reduce the risk of SUDEP:
In other epilepsy news, November is Epilepsy Awareness Month, and as Stacy has done in the past, she is having a Thirty-One fundraiser. This year 20% of her profits will go to The Epilepsy Warriors Foundation. If you are interested, here is a link to her Thirty-One Facebook group:
https://www.facebook.com/groups/1585874768310629
And here is a link to her first fundraiser event:
https://www.facebook.com/events/1749893725273794
There will be a second fundraiser starting toward the middle of the month and I will try to remember to post a link to that one as it gets closer.
Other Medical Stuff
James had a 6-month hip and spine checkup with the orthopedist last week. Unfortunately, his scoliosis is getting worse. Even the ortho was a bit shocked that that the curvature has increased about 10 degrees since December. He is going to check it again in April. The good news is that his hips seem about the same. There is some concern about his left hip coming out of the socket, but it seems to be about the same as it was last time.
This morning James woke up with a high heart rate, some congestion with discolored nasal discharge, and a low fever. Palliative care sent a nurse over to assess him and she thinks that he just has a cold. Stacy called the pediatrician and he said that he should be able to squeeze him in tomorrow. Fingers crossed this isn’t the start of pneumonia. We’re getting into that time of the year. Stacy has already told James that he is not allowed to get pneumonia this year. We’ll see if he listens.
School
At what age do kids start dating? I’m asking because I found out a couple of days ago that a one of James’ classmates has a bit of a crush on him. She gave him a note earlier in the week telling him that he is handsome and asked if she could have one of his school photos. Her mom put her number on the bottom of the note so that Stacy could call and setup a play date. What does Stacy do? She helps James make a picture to send back to this girl and includes his school photo. I am so not ready for this! How do we know if James is ready for it?
