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I don't normally post "just because" but for whatever reason the Lord has placed on my heart the desire to make a short post today. Claire had an awful meltdown last night and had a seizure that lasted 4 hours....yes folks you read that correctly...4 LONG hours. Today our girl has spent all day sleeping and having minor seizures. We do not know what causes these minor setbacks but they occur very 2 to 3 weeks. The good news...it's temporary and we know our happy Claire will return to us soon. The bad news...it is easy to become discouraged and feel hopeless when there is so little we can do to comfort our daughter. While driving in the car today I had an extremely restless heart...feeling sad and slightly angry at this setback. Then...God placed a song on the radio...one I've heard a thousand times and never paid much attention to...but today...today God knew I needed to HEAR these words. "Your Hands" by Jj Heller...
http://www.youtube.com/watch?v=w-F6DGGF4Qs&feature=youtube_gdata_player
I hope the link I posted works...if not I pray you take the time to listen on YouTube.
God Bless
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Hello! Clair is lovely, as is Tristan, and they are truly blessed to have you as parents- I've enjoyed reading your blog, as my 7-yr old son is one of the rare confirmed cases of pyridoxine dependent epilepsy. Much of Clair's first year is reminiscent of his- the vision challenges, abdominal/bm connection, lack of seizure control on various combinations of anti-epileptic drugs, delayed development but hidden cognitive ability beneath the surface... I found a few brief mentions of pyridoxine and folinic acid early on, but never saw if Clair had them administered while on an EEG and seizing- I also never saw whether she was genetically tested for pyridoxine dependency. And was she only given pyridoxine hydrochloride, or was pyridoxal-5-phosphate tried too? There are cases of pyridoxine responsive seizures, and other variations... We've run the gamut trying to get our son the best care possible. I would be happy to compare notes and share resources with you. Feel free to contact me at xavier@vitaminbcouncil.org (we're working on a non-profit to help raise awareness). Good luck to you all!
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