So, do you want the good news or the bad news.....

Abuse is never ok

Unfortunately, since I last posted,it's mostly been more of the same. Ben has continued to seize once a week. He's still having intermittent white/clay colored stools. Now his ketones are also fluctuating for no known reason just prior to the white stools. He also has had very high LDL (250-320), that's the bad cholesterol on your lipid test. Most distressing is that Johns Hopkins continues to be slow to respond if they respond at all.
It all came to a head two weeks ago. Ben had another seizure, another loss of ketones and another abnormal stool (all within a 3 day period) and no response from the Dr's to my repeated emails & phone calls. I had decided in March to try to get an appt in the clinic once a month for the summer months. I figured if they wouldn't deal with me from a distance, they'd deal with me face to face. If I didn't need the appt, I'd cancel them. I was talking to the Dr's secretary and he put us in for May, July & August. The only one he couldn't do was June since it was already booked. He told me to call the clinic manager and ask to be put in if someone canceled. Well,as I said, it was already a bad day. I called the clinic and was informed that Ben was not allowed to be seen more often than once every six months! Can you believe it!
So, never mind that he was having all these issues and that he was still seizing! They said they had limited resources and they needed to make room for the admission patients. See a problem here? I guess the priority is to get the kids enrolled, not to manage them once they're on the diet and having problems.
Well, as you can imagine, I FLIPPED OUT!. I was screaming and crying at the same time. I totally lost it on the lady. I finally calmed down and then she made the mistake of saying "I'll let the team know that you want to discontinue the diet".
So, then I flipped out all over again. I started yelling at her that I was NOT quitting the diet and I was NOT giving up on my son, but I was giving up on Johns Hopkins and that I would take Ben somewhere else.
One hour later the social worker called. This call didn't go much better. This is a women I haven't see except to pass in the hallway since last July. She called me up and started out by saying, "You don't talk Meg, let me talk". Not "I know you're upset, tell me what's going on" etc. She then read to me from the January clinic note, stating that it said how well Ben was doing! And she reprimanded me for being emotional and overwrought. First of all, the clinic note was talking about "how good Ben was doing" on the higher calorie count in regards to hunger. It had nothing to do with seizures. Also regardless of what it said, the note was FOUR MONTHS OLD! This fact seemed to escape the social worker. She then proceeded to tell me that the clinic had in fact been in contact with me. Never mind that she had never seen any of the numerous emails and that the only phone conversation I had was a voice mail message 3 weeks ago. When she finally did allow me to speak, I explained what had been happening since Jan. Every time I had a question she would say, "well I can't really address that, you'll have to speak to the physicians".... NO SHIT! Why do you think I keep calling! She finally added salt to the wound by saying, "well you know Meg, you may just have to accept that the diet isn't going to work for Ben".
What a blow. This, about a kid who had been seizure free for 3 months and when we were told repeatedly that he could be cured. I could accept what she said if I felt that the team had really tried to change his meds and find the right combo of med & diet (Like they said they would in Jan) But I truly feel that once he showed that he needed both diet and meds, they didn't want the hassle of dealing with the meds. Amazingly, in all my anger and all my tears the social worker never once said anything conciliatory or consoling. There's compassion for you.
Later on that night Ben's Dr did call me. We discussed what was happening including the continued poor response to my calls & emails. At one point he said "Yes, I got your email and I felt so bad, you sounded so down" (I was pleading with him for some guidance and assurance related to the ketones & white stool). I said to him "Yes I was depressed and I sent you that email over 3 weeks ago!"
I feel like I'm in an abusive marriage. They beat me up and then act contrite and promise not to do it again, only to repeat the pattern over and over. And I don't know how to break the cycle and I'm literally afraid to leave Johns Hopkins. I'm afraid on 2 levels. 1) We've been at JHH for a year now. If we try to go to another clinic they may say," if Hopkins couldn't find the answer for you, what can we do" and 2) You've already been on the diet a year without seizure control chances are you won't get control and it's dangerous to keep him on indefinitely.
I'm just so upset that I feel like we wasted so much time. And since Ben was seizure free, every seizure he's had since November, shouldn't have happened.

The plan is this. We go to JHH tomorrow. I'm going try to get them to understand how they are dropping the ball and impress on them how much we need their help. That they are probably Ben's last chance. I'm also going to ask them to let me titrate his meds and let them know how he's doing and if I need another med. I will also ask to please come back in July, if Ben isn't any better. Depending on their response, I'm calling the keto diet center in Charlotte, NC. I need to change before I waste anymore time.

Ironically, just this week, I've been contacted by a mom in Chapel hill who wants to know my opinion on the diet, especially @ Johns Hopkins. Her daughter is already seen at Johns Hopkins just not in the keto clinic. I'm conflicted. She's already comfortablele with Johns Hopkins and trusts them but I just don't know if I can recommend the keto program there.


On a brighter note

Now for the good news. Despite Ben's issues, he con tines to show improvement in his focus,coordination, stamina and overall health. He also has had slow but persistent growth developmentally. We had a meeting at school to plan his transition into kindergarten next year. It went well and I really like the team. I think they've come up with a good individualized plan to help him. We've also enrolled him in music class, which he loves twice a week this summer. And I've asked Carrie to tutor him twice a week in pre-K skills and academics. We're trying to prevent him from "slipping" while he's out of school and maybe even gain some ground.

Another good turn of events is that when we had that blow up two weeks ago the Dr increased his Zonegran and Ben hasn't had a seizure since. So this has been the longest break in a couple months. He has had longer breaks before only to have the seizures return. So we're not out of the woods yet but were hopeful. But the best news of all is that we did an EEG last week (we did it locally to take up with us to JHH) and it showed only one small seizure when Ben was asleep. His local neurologist was really pleased. He wasn't willing to give all the credit to the diet (remember,he never really wanted us to do the diet). He thought it may be an improvement just b/c he's another year older and some decrease in seizures does occur with age, but this improvement was so significant. And Ben has just been more alert and focused all year (even with the one seizure a week). All that sub-clinical seizure activity is gone. It's so pretty to see a flat line EEG. I know it's the diet and it's proof to me that we need to continue the diet. Even if we have to change clinics.

We go up tomorrow to Johns Hopkins and back on Tues. I'll try to post a shorter update once we get back. Send us your good thoughts & prayers for a safe trip and a productive meeting with the team.

all the best to you and yours,

-Meg