There's no place like home....

We're back. It was a very long trip up and back to Baltimore. No matter what we do, we always leave late and end up checking in after 10pm. We just don't travel very fast anymore. Luckily Ben was a real trooper. He didn't get to eat dinner until 8pm (his last meal was @ noon) and we never even heard a whimper. Then when we got there, he went right to sleep without a problem. A minor miracle.
We're now getting to recognize the hotel staff. The bell captains and the concierge (both day & night). It's kind of comforting and also kind of sad. We stay at the Radisson Lord Baltimore at the Inner Harbor. JHH is so cool. They have an accommodations office that books rooms for patient's & families at a major discount. This hotel doesn't have a pool but it has a Starbucks in the lobby, and has a CVS & a metro stop across the street. It's only 25 cents & a 10 min metro ride to the hospital. The metro line ends underneath the JH hospital. Right between outpatient & inpatient. How cool is that! They also provide a free shuttle service to the hospital but you're at the mercy of their schedule and I'm too impatient for that. Besides the metro is clean & fun (definitely not New York).
We saw the big brains @ 10am. They still feel that we're doing the diet correctly and that we don't need to change the diet. They are increasing Ben's depakote and said if they have to, they will take him all the way back up to 375mg 3 x day which is a huge dose. He was having platelet & coagulation concerns on the high dose but I guess it might be a necessary evil. The plan is to get his seizures stopped. Hold tight for a year & then try to wean the meds again. I think they said they might try to wean off the zonegran sooner if he responds well to the higher depakote dose, but I might have that wrong. Ben does have elevated triglycerides, not surprising with all the butter he eats. We're repeating the levels in a couple weeks and may have to consider statins to get him through. So we may trade a seizure med for a lipid lowering med.It all seems so crazy at times but I keep telling myself that it's not forever and that it's worth it.
The big brains did tell us that they have not altered their opinion that Ben has Doose epilepsy and that they still feel that he has a good chance at becoming seizure free & off meds. Especially considering how well he responded initially. They said that there are hundreds of epileptic syndromes and each one can have several variations. So even though Ben's seizures started earlier than usual and that his seizures present differently, they still feel that Doose is the correct diagnosis. This would be a very good thing since Doose responds really well to the diet.
Lastly we talked about the communication breakdown. Both team Dr's sort of blamed each other (this happened when each Dr was alone with us)and said that they are usually pretty good at keeping up. They promised to do better and gave us another email address to use. They also said that if they didn't respond to an email within 3 days to call the clinic. I'm not sure how much improvement we'll see. I talked to the dietitian last Thurs and we discussed the communication breakdown. Ted then emailed her on Sat asking for another copy of the diet CD-ROM (this is a vital tool for making the diet menus). He emailed her saying we'd see her on Tues and could she bring a copy to the clinic with her. She admitted this morning that she saw his email but never read it. So much for the new and improved. Then we find out that our main Dr is going to be on vacation for 2 weeks in Feb and that the dietitian will be on maternity leave for 3 months starting in April. At least we all know now that there has been a problem. I now know when and how to make a stink and hopefully they will be more responsive when I do. My biggest hope is that we get Ben's seizures under control then I won't have to worry about frequent emails & phone calls. I did ask to return in April even though we're not expected again till July. I think we'll get better attention and care if they actually see us in clinic. If all is going well by then, I can always cancel. We increased Ben's depakote today and Ben is due for his seizure by Thurs or Friday so we'll know more then. Keep your fingers crossed.
thanks to everyone for your love & support
Hope you and yours are doing well.
love,
Meg