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
e martë, 22 janar 2008
e diel, 20 janar 2008
We're off to see the wizards.....
Wish us well folks. We leave tomorrow to consult with the big brains at Johns Hopkins. They finally called last week, after several frustrated emails from me. I talked to the dietitian and one of the Dr's who runs the clinic. The overall decision was to increase Ben's meds rather than change the diet. They both said that since Ben's ketones have been so high, they felt that the diet wasn't the problem. Also that in their experience tweaking the diet (as in small changes)doesn't make much of a difference with seizure control. I've also noticed that when Ben misses food or fluids his ketones actually drop to moderate or large but when he eats every bite of food and drinks every drop, his ketones are XL. When I told the dietitian this, she said it confirmed for her that we shouldn't alter the diet. She said that even though the diet is a calorie restricted diet, some kids actually burn up their ketones when their caloric intake gets too low. The Dr said that some Doose kids need to stay on both meds and the diet in order to get seizure control. the plan is to try to regain seizure control and get Ben seizure free for one year. Then and only then will we try again to wean meds. So at that time he told us to increase Ben's depakote. This was a week ago on Friday.
Unfortunately since then Ben had another seizure. Exactly seven days since the increase in med. So the weekly seizure pattern continues. Ted and I are really frustrated and started to get depressed. I'm really worried that the Dr's might have be wrong with the diagnosis and positive prognosis. Ben's been having seizure since he was an infant and the longest we've ever gone between seizures has been 18 weeks.
Because we had gotten such good news in July and because we initially had such a great response with the diet, the recurrence of seizures is at times all the harder to bear.
We really hope the Dr's can give us some good news. Say a prayer for us and keep your fingers crossed that they'll be able to figure out the magic combination of meds and diet.
I sure would like to stop counting the days between seizures and start marking off the weeks without them.
Unfortunately since then Ben had another seizure. Exactly seven days since the increase in med. So the weekly seizure pattern continues. Ted and I are really frustrated and started to get depressed. I'm really worried that the Dr's might have be wrong with the diagnosis and positive prognosis. Ben's been having seizure since he was an infant and the longest we've ever gone between seizures has been 18 weeks.
Because we had gotten such good news in July and because we initially had such a great response with the diet, the recurrence of seizures is at times all the harder to bear.
We really hope the Dr's can give us some good news. Say a prayer for us and keep your fingers crossed that they'll be able to figure out the magic combination of meds and diet.
I sure would like to stop counting the days between seizures and start marking off the weeks without them.
e enjte, 10 janar 2008
The good, the bad and the ugly.....
The Good
We've finally had some good news come our way. Hopefully it's the beginning of a trend. Last week my manager at Duke said that she would allow me to continue in my current position in the adult intensive care unit. That means I can continue to work four weekend shifts a month with no loss in pay (they had been trying to make me work every Saturday & Sunday or they were going to drastically cut my salary). I give a lot of credit to my unit manager Miranda. She has a special needs son and knows what we're struggling with. I don't think that upper management was as empathetic to my situation but I think Miranda really went to bat for me. The nicest thing about this decision is that I will now be able to give up some of my hours at my other job (at least for the winter months) and spend more time at home.
The Bad
Ben has continued to have a seizure every week. That makes 8 seizures in 9 weeks (with only 2 changes made to try to regain seizure control). One seizure a week would be ok if he had been have 40-50 seizures a week. But right now he's having the same frequency of seizures as he did pre-diet. It also wouldn't be as depressing if we never had seizure control. But he was really well controlled. He only had 2 seizures from July till the end of Oct and both occurred when he was sick (so they kind of don't count). When the seizures returned we really hoped we could figure out what we were doing wrong and fix it. And the sooner the better.
The Ugly
The communication problems with the team at John's Hopkins have not improved. First we had a scheduling problem. We were told in Oct that our return appt was on 1/15. We even confirmed that in an email when we got home. So Ted and I both changed our work schedules, made our reservations and even planned a long weekend so we could visit with family. Then just last week we got the reminder letter from JHH and it said our appt was on 1/22! So I called the clinic the next morning to double check and the lady who runs the clinic was abrupt and unconcerned about the situation. Even though she was the one who confirmed the appt via email. She was not apologetic about any problems this caused us. She only asked if we wanted to move our appt to April! So much for the milk of human kindness.
Then to add salt to the wound, the keto team continues to be slow to respond to our emails, if they respond at all. Ben had a seizure last Thursday, I emailed the team to let them know (as I do after every seizure). I got a response from one of the Dr's on Saturday, which was 2 days after my email(pretty good turn around time, much better than 7-10days. I was hopeful). The Dr said he would talk to the dietitian on Monday and get back to me with a plan. And that was the end. Monday came & went, Tues came & went, then Wens & finally Thursday. A full 7 days and still no answer. Same old pattern. Then of course Ben had another seizure. I knew he would. Why would his seizures change when we hadn't made any changes to control them. I told my friends that I was waiting for Ben to have his seizure today and then I was going to really get ugly. I had emailed the dietitian earlier this morning to update her on some things because I was hoping she had met with the Dr and was discussing changes in Ben's diet. She emailed back and not only had they not met, she apparently was unaware of Ben's seizure activity or even his current med status even though she had been copied on every one of my emails! Unbelievable. I had written the whole team on 12/20 and complained about the poor response from the team. And still their communication has not improved. Apparently they either are not reading my emails or know and don't care. I'm not sure which is the answer but both options are equally depressing. So I sent the team another email, restating my concerns and complaints,in a little stronger language, and got no response. Then Ben had his seizure and I got really mad. I sent the Dr a nasty email and asked where he was and what was the plan! I asked if he was unwilling to make any changes unless he saw Ben. I said if that was the case, I'd be happy to drive Ben up there anytime they wanted.
That finally got a response, from the other Dr on the team. Guess what he said.
That they were really busy this week because they were having the keto admission week (apparently it's more important to keep the keto kids coming in than it is to follow up with the kids already enrolled!) He also said that I shouldn't be emailing the team, it's more convenient if I called and that I should only call the other physician. Not surprising
Now let me first tell you that this Dr has only emailed me once before and that was after my complaint email on 12/20. He emailed then to tell me that the other Dr was out on vacation, what is he the gate keeper and don't they have "out of office messages" on their email system? that would give some explanation as to why I never know if they get my emails. I think it's ironic that this Dr is now telling me that they prefer I call the clinic when I have questions. On 12/20 I asked him to call me and he emailed me instead. I also seriously doubt that calling is preferred over emailing. Why would they want me to call them and disrupt their day. They won't have any of Ben's information with them and they can't consult with the other team members. With an email, they can answer at their convenience, it's clearer because it's in writing, I can email more than one member at a time or easily forward info as needed and they have the email as a permanent part of the medical record. I can't believe that phone calls are really want they want. I think this is just a way to excuse their behavior and put the blame back on me.
The Dr said that the clinic social worker will call me tomorrow but if I don't hear from her by noon, I should call her and keep calling. Great! The worst insult is that this Dr said that they were really busy this week. I wrote back and said, that I was really sorry they are so busy. I was also sorry that I had been emailing the entire team for the past 6 months if that was not the protocol. I explained that I had been told during admission to do just that and had in fact been rebuked in Oct when the other dr thought I hadn't copied the dietician on my email. I also asked him that if I was misinformed about who and how to contact the clinic staff why has it taken them 6 months to tell me!
I was so angry during these emails my hands were shaking! I almost couldn't type. I knew the diet would be hard but I never thought dealing with the medical team would add to the stress. I know patients and their families quit the program everyday because it's too difficult or it's not working, but now I wonder how many people quit due to lack of support from the medical team. To make matters worse, our neurologist here at home has always been supportive but pessimistic about the diet. We've seen him twice since our last visit to JHH. When we tell him how Ben's been doing he asks what the team has said and I have to tell him that they haven't gotten back to us yet. He even said on our last visit, I don't know why your doing the diet if it's not working.
I wouldn't be so angry with the team if we had consistently made changes trying to control the seizures and he was still seizing. I would be depressed but not angry. I just feel that since he had been seizure free, every day that goes by without making a change & getting seizure control is a lost day. And every seizure he has is one that should never have happened. Especially when you realize that before this his only seizures occurred when he was ill and Ben hasn't been sick in months. So if we had aggressively sought to correct the diet/meds and regain seizure control, he could've been seizure free this whole time.
I am determined to continue this diet and seek a cure or at least the best possible seizure control with or without JHH. I'll take Ben to the programs in Charlotte or Pittsburgh. I'll even start making changes myself if I have to, until I can find someone else to manage his care. This is not over.
We've finally had some good news come our way. Hopefully it's the beginning of a trend. Last week my manager at Duke said that she would allow me to continue in my current position in the adult intensive care unit. That means I can continue to work four weekend shifts a month with no loss in pay (they had been trying to make me work every Saturday & Sunday or they were going to drastically cut my salary). I give a lot of credit to my unit manager Miranda. She has a special needs son and knows what we're struggling with. I don't think that upper management was as empathetic to my situation but I think Miranda really went to bat for me. The nicest thing about this decision is that I will now be able to give up some of my hours at my other job (at least for the winter months) and spend more time at home.
The Bad
Ben has continued to have a seizure every week. That makes 8 seizures in 9 weeks (with only 2 changes made to try to regain seizure control). One seizure a week would be ok if he had been have 40-50 seizures a week. But right now he's having the same frequency of seizures as he did pre-diet. It also wouldn't be as depressing if we never had seizure control. But he was really well controlled. He only had 2 seizures from July till the end of Oct and both occurred when he was sick (so they kind of don't count). When the seizures returned we really hoped we could figure out what we were doing wrong and fix it. And the sooner the better.
The Ugly
The communication problems with the team at John's Hopkins have not improved. First we had a scheduling problem. We were told in Oct that our return appt was on 1/15. We even confirmed that in an email when we got home. So Ted and I both changed our work schedules, made our reservations and even planned a long weekend so we could visit with family. Then just last week we got the reminder letter from JHH and it said our appt was on 1/22! So I called the clinic the next morning to double check and the lady who runs the clinic was abrupt and unconcerned about the situation. Even though she was the one who confirmed the appt via email. She was not apologetic about any problems this caused us. She only asked if we wanted to move our appt to April! So much for the milk of human kindness.
Then to add salt to the wound, the keto team continues to be slow to respond to our emails, if they respond at all. Ben had a seizure last Thursday, I emailed the team to let them know (as I do after every seizure). I got a response from one of the Dr's on Saturday, which was 2 days after my email(pretty good turn around time, much better than 7-10days. I was hopeful). The Dr said he would talk to the dietitian on Monday and get back to me with a plan. And that was the end. Monday came & went, Tues came & went, then Wens & finally Thursday. A full 7 days and still no answer. Same old pattern. Then of course Ben had another seizure. I knew he would. Why would his seizures change when we hadn't made any changes to control them. I told my friends that I was waiting for Ben to have his seizure today and then I was going to really get ugly. I had emailed the dietitian earlier this morning to update her on some things because I was hoping she had met with the Dr and was discussing changes in Ben's diet. She emailed back and not only had they not met, she apparently was unaware of Ben's seizure activity or even his current med status even though she had been copied on every one of my emails! Unbelievable. I had written the whole team on 12/20 and complained about the poor response from the team. And still their communication has not improved. Apparently they either are not reading my emails or know and don't care. I'm not sure which is the answer but both options are equally depressing. So I sent the team another email, restating my concerns and complaints,in a little stronger language, and got no response. Then Ben had his seizure and I got really mad. I sent the Dr a nasty email and asked where he was and what was the plan! I asked if he was unwilling to make any changes unless he saw Ben. I said if that was the case, I'd be happy to drive Ben up there anytime they wanted.
That finally got a response, from the other Dr on the team. Guess what he said.
That they were really busy this week because they were having the keto admission week (apparently it's more important to keep the keto kids coming in than it is to follow up with the kids already enrolled!) He also said that I shouldn't be emailing the team, it's more convenient if I called and that I should only call the other physician. Not surprising
Now let me first tell you that this Dr has only emailed me once before and that was after my complaint email on 12/20. He emailed then to tell me that the other Dr was out on vacation, what is he the gate keeper and don't they have "out of office messages" on their email system? that would give some explanation as to why I never know if they get my emails. I think it's ironic that this Dr is now telling me that they prefer I call the clinic when I have questions. On 12/20 I asked him to call me and he emailed me instead. I also seriously doubt that calling is preferred over emailing. Why would they want me to call them and disrupt their day. They won't have any of Ben's information with them and they can't consult with the other team members. With an email, they can answer at their convenience, it's clearer because it's in writing, I can email more than one member at a time or easily forward info as needed and they have the email as a permanent part of the medical record. I can't believe that phone calls are really want they want. I think this is just a way to excuse their behavior and put the blame back on me.
The Dr said that the clinic social worker will call me tomorrow but if I don't hear from her by noon, I should call her and keep calling. Great! The worst insult is that this Dr said that they were really busy this week. I wrote back and said, that I was really sorry they are so busy. I was also sorry that I had been emailing the entire team for the past 6 months if that was not the protocol. I explained that I had been told during admission to do just that and had in fact been rebuked in Oct when the other dr thought I hadn't copied the dietician on my email. I also asked him that if I was misinformed about who and how to contact the clinic staff why has it taken them 6 months to tell me!
I was so angry during these emails my hands were shaking! I almost couldn't type. I knew the diet would be hard but I never thought dealing with the medical team would add to the stress. I know patients and their families quit the program everyday because it's too difficult or it's not working, but now I wonder how many people quit due to lack of support from the medical team. To make matters worse, our neurologist here at home has always been supportive but pessimistic about the diet. We've seen him twice since our last visit to JHH. When we tell him how Ben's been doing he asks what the team has said and I have to tell him that they haven't gotten back to us yet. He even said on our last visit, I don't know why your doing the diet if it's not working.
I wouldn't be so angry with the team if we had consistently made changes trying to control the seizures and he was still seizing. I would be depressed but not angry. I just feel that since he had been seizure free, every day that goes by without making a change & getting seizure control is a lost day. And every seizure he has is one that should never have happened. Especially when you realize that before this his only seizures occurred when he was ill and Ben hasn't been sick in months. So if we had aggressively sought to correct the diet/meds and regain seizure control, he could've been seizure free this whole time.
I am determined to continue this diet and seek a cure or at least the best possible seizure control with or without JHH. I'll take Ben to the programs in Charlotte or Pittsburgh. I'll even start making changes myself if I have to, until I can find someone else to manage his care. This is not over.
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