another bad day... looking for ped-neuro in DFW, Tx area

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Posted by Norris ( on May 08, 2001 at 12:52:49:

Have started on these meds until we find a neuro that understands what is going on... We have started a combined therapy... seizure and CH although I do not think he is having seizures... The FP office where I work is looking today.

My son denied the O2 this am so he could pass out... Things went a lot better than with the O2 last night as we got behind and stayed behind for a hour and he never did pass out last night. What pain... If they last that long maybe analgesics would help.

We have aborted these things with O2 but if we get behind it does not work... Oh God!!! We are hurting and my son asked last night while he was crying in pain why God does not take this cross from him. Man!! it is tuff. I can only say to him that God does things in His time not ours... I also told him this period in his life will most likely be the toughest thing he ever does in this world.

Maybe the passing out is a God send? Waiting and praying. My wife and feel He is slipping away... His hope is diminished and I try not to cry in front of him between these horrible spells.

Just when you think you are getting some kind of control the steering wheel is yanked from you.

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