9:00 The past few weeks have been hard for her. She has had her ups and downs. I’m not positive what is actually wrong but there is something. She is not herself at all. At times she seems to be in pain with her stomach and at others she is having more breakthrough episodes. I was suppose to call her neuro. last Monday but after a bad weekend I didn’t want to hear, “I told you so.” as far as starting her on the Keppra. Last Thursday I brought her into her ped. just to get her checked out. She ran labs but everything came back pretty much within the normal limits. Turned out that was a better day for her. Then as we were leaving we ran into her neuro. I didn’t know she came to Eau Claire. All the trips we made just to see her in Marshfield and she comes to Eau Claire. We talked briefly. She wanted to know how things were going. I filled her in and she said let’s wait till she is feeling better before we change anything. Then over the weekend it was bad again with episodes. Sat. she had 3 and Sunday her breathing was so very labored she could barely handle it. Her heart was racing between 130-160. She was so clammy so looked like she had a fever but didn’t. It was scary. There has been 5 different days this month that she has had episodes but when she has them it is not only one any more it’s 2-4. The other thing is she seems to be having more that if I can catch within the first second or two as they start I think I can stop it by moving her arms and talking with her. I don’t know if it is coincidence or not. I talked with another Rett mom on Sunday and she suggested raising the Keppra because she is on a low dose and maybe with us lowering the Trileptal she doesn’t have enough in her system. Makes sense to me. That could explain why she hasn’t been feeling well and been having more breakthrough episodes. So I called her neuro. Monday suggesting raising the Keppra and why I want to but she said no let’s wait till she’s healthy first. But if this is the reason she’s sick… I didn’t get anywhere. Monday she slept all day. When she has a day of bad breathing it tires her out so bad. That is one of the reasons she is always tired. Tuesday she had her scheduled appt. with her secondary ped. at Gillette. One of the docs involved in the Rett Clinic. I got farther in the time with him than I have in weeks. He believed me and told me to keep pushing the other drs., to make sure not to let them use her as a guinea pig, and to remind them that I know her better than they do. He agreed possibly raising the Keppra but first he would want to check on things that have bothered her in the past. He’s seen her enough to know something is wrong by looking at her. Considering her stomach pain he wanted to check her pancreas levels, especially since they were raised not long ago, He also thought getting her a CT with contrast would be a smart idea to rule out scar tissue causing her pain. If he could have he would have had it done while we were there. That’s how important he thinks it is. It’s nice he believes in Rett girls. He always makes me feel better after we see him. He is going to call me some time today with the lab result and he also is going to call Park to see what he thinks. So after we left I quickly called Mary to give her a heads up on what is going on. Kathy has an appt. with Park next Tuesday. Hopefully something will be figured out. Personally I think we need to raise the Keppra but do agree with ruling other things out and I know her neuro. won’t raise it at this point. 11:00 The Dr. Beisang from Gillette just called and given the way her labs have come back, looking pretty good, he thinks we can wait on the CT scan and push her neuro. to raise the Keppra. Just as I thought. Now it is to get her to understand that the reason she may be not feeling well is because she needs the Keppra raised. I had to fight so hard just to get her to put her on it.
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