EEG on 9-17-08

Makily's six month EEG.

This is my daughter having an EEG (electroencephalogram). Makily is a four year old little girl living with Emanuel Syndrome. In June of 2006 she had her first and THANKFULLY only grand mal seizure that nearly killed her. Makily was given SEVERAL doses of IV medication to stop the seizure with no results. The doctors were forced to basically put Makily into a drug induced coma to stop it. She was sedated, intubated and paralyzed for three days to give her body and brain time to rest. She has been on Topomax ever since and has not had any seizure activity since (*knock on serious wood*).

To learn more about Makily and our family's life please visit
www.mynewnormal.blogspot.com

Category:

People & Blogs

Tags:

• 1122
• EEG
• Emanuel
• epilepsy
• Makily
• OneTrueMedia
• Partial
• seizure
• Syndrome
• Trisomy

[patyrish]

Before the strobe was used in the video it says "strobe light used to try and induce a seizure".  I'm not sure what more I could have done to warn you that a strobe is used in the video? Maybe you should have stopped the video or looked away?

[danaleigh0307]

Thank you for posting the video of your precious daughter. My 9 year old son has to have an EEG next week, and the nurse thought it might be helpful for him to watch a video of one first(he gets very anxious). Your daughter did so great that now he is ready to go. Thanks a bunch and god bless.

[patyrish]

THANK YOU for this comment. This is why I do these videos. To help other families that are coping with some of the same issues. To know that my baby girl helped another child feel at ease does WONDERS for me. Every now and then I get an ignorant comment that infuriates me but comments like yours remind me why I do this.

Tell your son that I said good luck and that it is really no big deal. Just lots of stickers on his little head!

God Bless and thanks again!

[patyrish]

We havent gotten the results yet. Should within the next week or so.

[NicoleCharmed]

@Mousegirl913 Yeah me too, i had this morning the same test.. and now i walk at least 24 h with that stupid thing on my head.. -.-'

[txturtlelytiger]

loking at her strobe test light almost made me seize,lol. but i snapped out of it.

[Mousegirl913]

ah, the evilness of EEG's ><; I'd always be told to close my eyes during the strobe light...[Strobe lights hurt my head like hell when I'm near them]

[MaiseysGran]

have just returned to this video to let you know that I was explaining an EEG to a friend a few days ago and then did a search on youtube and found this. As soon as the strobe lights started, I seized, a tonic-clonic that lasted around 12 - 15 mins I am told. So, no hard feelings, but was just wondering if maybe you could put a strobe light warning on the title of this. If it had one when I came across it, I wouldn't have watched it as I am one of those for whom strobe lighting is a trigger. :)

[MaiseysGran]

STROBE WARNING

[diabeticgurl]

Emmanuel syndrome is a disorder caused by a trisomy on the 22nd (I think) chromosome. It causes severe mental and physical disabilities. If it is a full trisomy it's normaly fatal. I read makilys blog and makily only has a partial trisomy. I think I got that right. If not please correct me, I tried to recite this from memory

[amysarahh]

May I ask what Emmanuel Syndrome is? She is adorable.  How did it go?

[poomuncher5000]

god i hated these, i useto have epelypsy when i was younger i hpe all is well for her.

[UFAkefe100]

this video brought back memories of when my little one got her first EEG if you want to see it click on my user name she was such a good girl she sat there and acted like nothing... this is normal for our girls procedures hospitals vitals being taken at random times in the middle of then night :) God Bless you and your fam