appt update

Jul 1, 2009

adrian took claire to the neuro appointment at barrow alone and it went well. he said he liked her neurologist, dr. ng, even more this visit than before, which is a comforting thing for us. he made no mention of the scary ATCH steroid injections as a treatment option for claire (phew!) and instead wants to try raising the doses of the two seizure meds (keppra and vigabatrin) that she is on currently.

if that makes no difference in the next couple weeks then we will try the ketogenic diet. it’s basically atkins to the EXTREME. she would have to start it in the hospital under watch of a dietitian, who would also train us on implementing the diet. many families see a great reduction in spasms on it so we have no problem giving it a try if recommended. it will be difficult to stick with- we’d even have to switch what wipes, lotions, shampoos, etc she uses but if it helps we are all for that. and if it doesn’t help then we have a couple more medications to try (which i am praying is not needed.) from here on out the new meds to try are more toxic to the body and have a lot more serious side effects than the tiredness, insomnia, irritability and spittiness that we are dealing with now. so in the next couple weeks we will just have a more sleepy, grumpy girl as we increase the dosages. but at least she is a sweet, cute, sleepy grumpy girl (see evidence below)


please keep praying that this will work for claire and that God would miraculously heal her brain. thank you again for all of your support, we love you guys.

by | Categories: family |

3 comments | leave a comment

  1. Kavita
    July 2nd, 2009 at 9:19 pm #

    🙂 your post made me smile.

  2. Mike Olbinski
    July 3rd, 2009 at 4:54 pm #

    Of course we’ll keep praying…would be wonderful if this new dosage works, but if not, maybe the diet will. Might be hard, but it would be awesome if it really helped.

    Love you guys too!

  3. Ryan Evjen
    July 6th, 2009 at 8:48 am #

    I love those big front teeth of hers 🙂

    I love you guys so much. I’ll be praying these options work and that God would give you both superhuman patience and strength.

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