Empowered/I Love Dr. Theile

I feel so empowered right now. I just had a lovely conversation with our TSC expert, Dr. Theile. She is so awesome! Y'all would really like her- super personable. I am so glad we have a relationship with them because they really know TSC. The main highlight is that my instinct was right, those seizures were Infantile Spasms. She said without a doubt, that is what they are- she doesn't need to see an EEG. She and I were also on the same page about a drug, only available in Canada, that has had great success with seizures like Oliver's. I ask our local dr. about this 2 weeks ago at our appointment and he told me he didn't know much about it and honestly I felt a little dismissed. I had spent a while doing research and thought it was a viable option. I'm sure you can relate to how that feels- being shot-down :(

How empowering that 2 things I felt strongly about weren't wrong- they were actually dead on. I told Dr. Theile that sometimes, when I tell people (especially doctors) about treatments I've researched I can leave feeling dumb or dismissed. She said our conversation should make me feel empowered and that I had to realize that I would know more about TSC than most doctors I encountered. It is an odd role reversal, me trying to tell a doctor something I've learned. It is hard to appreciate what an awkward position this is until you are in it...guess I need to get a bit more comfortable with the awkwardness :) Who knew this would be such a part of motherhood- second guessing yourself.

Dr. Theile also recommended we consider a diet, that was pioneered at Mass General, for TSC seizures, the Low Glycemic Diet. It is much less restrictive than the Ketogenic Diet and doesn't require a 4 day hospital stay with fasting. The only catch is we would have to go there in person to officially start it. In the meantime Dr. Theile said we can email their dietitian and get some ideas on foods we could modify as we consider if we want to do that diet.

There is great news, which we already knew, but is so good to hear. Dr. Theile has seen other children with late-onset IS and they all have normal cognition and development. It isn't a guarantee but, it is so encouraging. So far we haven't seen any regression with Oliver, so we are feeling very optimistic that everything is on track with him. In fact, in the last few days we have seen his speaking and vocabulary really take off! Even though Infantile Spasms are a "catastrophic form of childhood epilepsy" Oliver really is most certainly out of the serious danger zone due to the late-onset. All that to say, let's call it what it is, rejoice they didn't start when he was 2 months old, and get going with a treatment plan!

Now we are waiting to see how my email to our local dr., about this discussion, will go. We are hoping he will be gracious and work with Dr.Theile but, if not we will go to Duke. Dr. Theile is good friends with their chief pediatric neurologist, Dr. Mikati. We have an appointment with him in February. We're just trusting God is going to make it clear about whether to switch to Duke. I am a little nervous (see paragraph 2) of offending our doctor (which is silly) but, I am letting go of my people pleasing issues for the sake of Oliver. I am embarrassed a bit to admit that but, hey if this blog isn't real then what is the point?

Overall I feel much more settled than I did when we left the hospital. I prayed for clarity and I'm so thankful it has been given. In this new world of TSC unknowns, a few certainties are treasures.