We got back late last night from Baltimore. It was a quick trip but so much less stressful then our last trip up to Johns Hopkins. Lauren has been doing so well this past week-we never fasted her. Our appointment on Tuesday started out with an EEG we then had lunch and a quick visit with one of the families that we started the diet with. In the afternoon we met with Lauren's doctor and dietitian. I am a little confused on the results of her EEG-but based on the 3 EEGs they have seen at Johns Hopkins they are pretty sure that she has Doose Syndrome. 6 months ago this news would of been devastating to us, but after thousands of seizures it is encouraging. It is so confusing to have two different doctors at two different hospitals look at the same EEG and have two different diagnosis. Anyway all her other tests looked good -her cholesterol is only 203! They are concerned about her weight gain (she has gained 6 pounds since she started the diet). She is not suppose to gain weight on the diet so they are adjusting her calories again. They are wondering if this has been the reason for her up and down seizure control. Overall they wanted to stress that the diet is working, we went over her seizure calender since starting the diet and she has had 36 seizure free days and she has been on no anti-seizure medications. Before the diet she was on 3 medications and never had seizure free days-so the fine tuning continues and hopefully we can achieve more seizure control.
When we were getting ready to leave the hospital after our appointment we mentioned to Lauren's doctor that we were going to try to go to an Orioles Baseball game at Camden Yards that night-since our plane didn't leave till the next day. Her doctor said that he was going to the baseball game also and told us to buy the cheap seat and come sit with them in section 40. After convincing the usher we got through and sat with her doctor 10 rows up behind home plate! It was so much fun.
We stayed with my brother John again, he has a nice apartment that is not to far from the Hospital. He is taking his boards for medical school next week-so he was nice to let us stay there even though he was so busy.
The next morning we had a little time before our plane left so we went to the Inner Harbor in downtown Baltimore. Lauren loved looking at all the boats so we took a paddle boat ride in Chesapeake Bay. We then enjoyed a great lunch at the Cheesecake factory overlooking the harbor while Lauren ate her butter and cream and watched all the birds on the patio.
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2 comments:
I'm happy she's doing better and you have encouraging words regarding the diet. Keep going...you're doing a great job! Kim
We love to see pictures of her smiling, she looks great. I am glad the visit went good. Good luck! We love you guys!!!Love, Monae and Aaron
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