Ezri’s Neurology Appointment
Tags: dacrystic seizures, gelastic seizures, HopeforHH.org, hypothalamic hamartoma, Living with Hypothalamic Hamartoma, medication changes
I know I will regret saying this as soon as I say it, but this past week has been unusually good for Ezri. Sometimes it seems that all we need is an upcoming neurology appointment so the HH can deceive us, quieting itself down a bit and allowing Ezri some of the most "normal" days she is ever able to have. I am always awed by Ezri's maturity on the rare periods and days where she is doing well like this because she is so happy (not in a gelastic way, but a peaceful way) and she is easy and eager to help me or anyone around her in any way she can. At these tunes she simply 'exudes' goodness which may sound cheesy, but is true. It also reminds me just how much the HH is affecting her all day long each and every day, as there are many, many instances where she gets upset on a typical day and even I have a hard time knowing for sure if its HH related or '6-year-old' related.
Last Friday we saw our neurologist for another appointment. Ezri is now off of the Tegretol and continuing with the Keppra and Lexapro, both of which have had significant positive effects for her, but we are still in search of an anti-convulsant that might help the numerous sad and/or sometimes angry spells that occur on a daily basis. At this point we have tried much of what is out there and so decided to try a new anti-convulsant, Potiga. Apparently this one works in a unique way, so although chances are slim to none of an anti-convulsant working on gelastic-level-seizures, I am keeping my fingers crossed that this one will help.
It was also interesting to watch the doctor testing her reflexes this time because of what I've learned in physiology as of late. All of them are 'normal' except I noted when he did the 'Babinski' test on the right foot that Ezri's toes flex up and fan outwards (this, after the sole of her foot is stroked from heel to ball). It means there is neurological damage to the motor neurons in the brain, which happens to be on the opposite (left) side because of the way they cross over on the path to the brain. This something we've known since that first surgery she had, but neat to see the puzzle pieces fitting together and why.
As of tonight, we have not started the Potiga. It's been waiting at the pharmacy for 2 days now, but I have been so happy with how Ezri has been doing these past few days that I wish it could continue forever and I won't make any changes until there's a 'need.' Keeping fingers crossed that Ezri will continue to encounter more days like these last few!