Monday, May 14, 2018

Clara's latest EEG Results and Update

Cutest girl in the world! 
Clara had her second EEG done in early April of this year. Her first was done at just over one year old.  The reason's for ordering this test is too much to get into here, but basically we have been working toward securing state services for Clara and have been going through the beast of a process of getting denied because she is not deemed "severe enough" - requesting an appeal for a fair hearing - completing two fair hearings - gathering letters of support from all of Clara's medical professionals to speak to our need for services - etc. It's been a blast!

Or the exact opposite of a blast. 

Anyways, I asked our neurologist (who we had not seen in several years) for a letter of support for our case and in order to get said letter we had to make an appointment (since he had not seen Clara in such a long time). After updating him on Clara's latest milestones and ongoing goals, I mentioned Clara spaces out from time to time, he wanted to rule out any seizure activity, so he ordered an EEG. 

He also ordered a sleep study as she wakes nightly for one to two hours. 

We received the results last week. Her EEG came back "sufficiently abnormal." This type of seizure activity is suspected and she will have a 24 hour EEG sometime in the near future to get a better idea of what is going on. If needed, she will be treated with medication to help control the episodes. 

Her sleep study results came back normal. Apparently she just likes to party at night! Disrupted sleep is common in kids with neurological differences/special needs, which we knew, so thankfully there is not more going on there. 

The neurologist explained that sleep deprivation lowers your threshold for seizures plus effects developmental abilities, so a non-habit forming sleep medicine for bedtime was prescribed.  

Clara on her 6th birthday! Took her to the mall to ride the carousel, her favorite! 
I had a hard few days after learning of these results. For some reason the word seizure just made me feel sad. I was honestly probably more in shock that anything, since I was not expecting these results, but I am doing much better now!

The good news: The neurologist, along with Clara's pediatrician and eye doctor, all agreed that they have seen many kids who were having these a-typical absent seizures get on medicine and then experience a boost in development. All three professionals said this is good news. Now that we know what is (most likely) happening we can take steps necessary to help Clara progress in all areas of development. This is a huge blessing!

God works in mysterious ways, friends. If we had been approved for the state services initially we would have never pursued letters of support from Clara's doctors. Thus, we would have never made an appointment with her neurologist and he never would have ordered the EEG.

Please pray for Clara (and us) as we get ready for this test. 24 hours is no joke. She put up a fight for the 1.5 hour test, so ya know (smile). Thankfully we have a prescription medicine that should help calm her (for a time) but 24 hours is a whole new ballgame.

Thank you for the prayers and support!

1 comment

  1. I'm sure that must have been hard to take in, but yes, obviously it was needed for more reasons than you knew! Thankful you have more answers so you can get Clara even more help. How does the 24-hour test work? She has to just stay in the same room with stuff on her head and be monitored all day?! Can they give you any meds to calm you down? Ha!


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