Unfortunately there is something called a "honeymoon" period when on anti-seizure medication.
A brief period of time where the seizures cease; creating a false sense of hope
---and then---
they come back- punch you in the gut and leave you breathless as they cackle
Pretty sure that is what we just experienced.
I was really hoping this new medicine would help stabilize us but this morning proved otherwise.
I feel like I am constantly trying to accept the new norm...
If there was just something that was consistent, something that provided me with a little bit of foresight to know what to expect
...but no that would be too easy; instead we will just change it up every. single. day.
The only constant is change.
I am not good at change.
...and in the mean time I will just keep pumping my 3 year old with horrific drugs so that the neurologist can feel like he is doing his job.
Have I mentioned I HATE Epilepsy!
*it's been a long day...i'll try to be positive tomorrow
5 comments:
Sooooo SORRY! I really feel for you. I hope you have a better day and find a better way. Claire, you write so well. I love to read your words. They are so descriptive. I can really feel the meaning you put in them.
Claire I think you are doing so well! I have been following all of this craziness for your family and Quinn. We are praying for you guys. I'm glad things with Dr. H went so well and you got some good info. We are so sorry and sad for your situation but I just wanted to say that I think you're amazing and we're wishing you the best! Good luck! Wish we lived closer to help in some way. Love you guys.
How frustrating :( It would be so nice if there was such a simple fix. But it should get better with age-- unfortunately that's a LONG-term progression... Hang in there!
Claire...
My sister's nephew has seizures (among other things) and I was talking to his Mom about you. I told her about how you were thinking about that diet. And she had only positive things to say and said it can work miracles, but she did say (I don't know if you already know this) that you have to be really careful about other things besides the food. I guess things like lotions can get into the blood stream and affect the diet that way too.
Just thought you would like to know! Question, have you looked at other nuerologists outside of Utah, either at Standford or the Mayo Clinic? Most insurances cover services outside of your state and there has got to be a Dr. that is a little bit more experienced with situations like Quinns.
Claire,
I cannot even begin to imagine all the heartache and stress you are going through every single day. I am so sorry. I think about you and Quinn and you're always in my prayers. Please let me know if I could help or be of support in any way at all. You're amazing!
Lauren
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