Ann Lamott wrote a book called: “Help, Thanks, Wow: The Three Essential Prayers.” I’m sure she is not the first one to notice. Honestly, I haven’t read the book (yet). But now that I know to look, I’m seeing the pattern.
Exactly 4 years ago, the day before Thanksgiving, we entered the “help” phase when Nora had her first seizure. We saw doctors, started keppra, got lots of help from our community. Then she was seizure free for quite a long time, until they came back and the myoclonics appeared. At this time three years ago we were practically shrieking “HELP!” from the rooftop because nothing was working. Then we found the ketogenic diet, Dr. Wray joined OHSU, and we got started.
It worked. We started her on the Modified Atkins Diet (MAD) and saw improvement. Thank you. After breakthrough seizures we started increasing the ratio. Fewer seizures with each increase in ratio until we reached 3.5:1 and held steady there. Since her last seizure in April 2012 we have been counting the seizure free days. Thank you! By July of 2012 she was weaned off of all antiepileptic drugs and she was growing and developing normally. THANK YOU! In April 2014, after 2 years seizure free, we started a slow wean off the diet.
Now, we enter “WOW.” Almost 3 years on diet therapy, 2 years and 7 months seizure free, and Nora is weaned back to the 1:1 ratio of the Modified Atkins Diet. We have come full circle and are re-learning MAD again. When we do the ketostix urine test at home, she still has some ketones but it is very weak now.
Not that we don’t continue to say “help.” Nora’s kidneys have been acting up again. She complained that her “side hurt,” and when we asked her to show us she put her hand right over her kidney and drew a line around to her bladder. She had a urine test earlier in the week–yep, crystals were present, maybe stones. Maybe a small stone had already passed; we will never know. This isn’t a major threat, but a bummer. We are so close to the end of the diet and she is otherwise great. Skipping is her latest hobby and she is excited for swimming lessons because she likes going in the deep side of the pool now. Her ultrasound was normal, so her pediatrician wants to wait on further testing while keeping her hydrated to help stop any stones from forming.
Normally I don’t get too down about this stuff and didn’t this summer with her kidney issues, but it wears a person down over time. When you know a family with a health problem, especially a child, your heart goes out to them for the anxiety and fear for the beloved one’s health and safety. But one thing I’ve learned is that it is not just the fear of the health consequences, but also the sheer amount of time and energy that goes into coordinating doctors, tests, advocating to get something done in a reasonable time, making sure that lab work contains an order for the right information, sorting out what is meaningful and what it not, doing the research to ask the right questions and understand the answers. I’ve learned the hard way that you should double check things up-front instead of making the trip back to the clinic for another blood draw. I feel grateful that Ted and I are in this together and Nora is such a trooper about it, but at the end of the day it still leaves you exhausted and saying “help” even when there is nothing left to do.
Looking for more reasons to say “thank you” is a powerful strategy. As long as I was in contact Dr. Wray regarding her kidneys, I asked if we could do a blood test to check her blood acidity (see The Blood Acid Chronicles post for more info). She is still taking baking soda dissolved in water twice per day and would be a happy girl if weaning the diet means that she can stop taking baking soda. She was a super champ about the blood draw (despite requiring 2 pokes) and we brought flowers to Erika, our favorite phlebotomist, because she is changing jobs and we won’t get to see her anymore. Erika and I cried, but not Nora. Even after all of that, Nora lost it when I dropped her off at school because she was late. Thank goodness for teachers who say, “I’ve got this.”
The next day we got to “thank you” again: Nora’s blood acidity is back in the normal range. She can wean off of baking soda in the next 2 weeks….IF she has no kidney stones. The baking soda helps to keep stones at bay too. If Nora doesn’t complain about the side pain anymore then we will make sure she stays hydrated and start weaning the baking soda too. Wow!
I can hardly believe that Nora is a 1:1 again. We will continue to calculate and weigh food for the next 3 weeks, as scheduled, to get a feel for MAD portions. Then we will start estimating some meals without weighing if all is still going well. We still have her carbs capped at 38 g per day, which has been the limit for the last 3 weeks. At some time we will start moving up the carbs and down on the protein to try to stay around 1:1, but as we start estimating meals those numbers will be less precise.
We have to feel this out and keep watching Nora, which brings me back to HELP! all over again. Not that there is anything imminently wrong, but I’m holding my breath and hold the hope tight in my heart like a small fluttering bird. I know we have been in the hopeful watching and waiting before as we began the first count of seizure-free days. I hope that one day 3 months from now, then 6 months from now, then 1 year from now the reality of that monumental passage of time will hit me and I will live in a place of Thank You! and WOW! But right now we wait in hope for those days. Help! Thank you! and Wow! all come and go through the same revolving doors through our lives and right now they are making me a little dizzy.
Well, I am feeling the WOW! I know that fluttering feeling — excitement and nervousness all in one. I’m soooo happy for you and for Nora! You and Ted are amazing parents!
Hi!
My dauhgter is in KD ratio 3:1. She has too much calsium in urine and her urine is too acid.
We started to give her Uralyt-u medicine. It should rise urine pH and prevent calsium entry in to urine.
She had take her new medicine 5 days and urine pH has rised so much (earlier under 6, now over 7).
Our doc said this medication is better than baking soda…
Best regards,
Tina
I have reading the information on your blog and your journey with Nora. It gives me great hope for my daughter Emma. I replied to Ted’s tricks and tips post a few months back. We are just starting the diet for my daughter, she is 22 months. We have been home from the hospital for 4 days. I am using the keto calculator and designing her meals so far so good. But sinced we switch ched to the pill forms I am having trouble getting her to the keppra. The depakote I can put in food but there is so much keppra it must really change the taste of the food and then she won’t eat it so now I have been putting it in a syringe with a bit of keto kooliade to get her to take it and it is a struggle.
Any ideas on how to get her take her keppra. She also has to take sodium bicarbonate twice a day and that has been a struggle so I am looking for feedback there.
Thanks for the information on your blog it will help us as we begin this journey
Maryann
Maryann,
I am sorry but I don’t have any great tips for this. It’s always going to be a struggle to get young kids to take non-sweetened medication. Nora was not on Keppra at the same time as the diet. But she was on Depakote for a while. We put the Depakote in cream, but she did not like it and sometimes it was a struggle. Just try to have gentle persistence, and keep looking for some food that can mask the taste. You could also ask your doctor if you can get it in another form perhaps?
Ted
Maryann,
I don’t know if you will get this or not, but we had similar issues with our kid. He has Doose syndrome and started on the diet when he was 3. When we started on the diet he was taking Keppra and Depakote. Every kid is different, but what worked okay for us was chocolate cream. We put some unsweetened cocoa powder and Sweetleaf Stevia in the cream. It wasn’t amazing, but it was tolerable. It was nice because only one part of his meal was gross and the rest tasted good. When he went seizure free we worked to get him off Keppra as fast as we could because it was so gross. He is now off all seizure medicines and just takes supplements. We still stick his supplements in the chocolate cream. The first few months are really tough, but if you work at it you will eventually find a rhythm that works. Good luck.
Amanda
Thanks for your input Amanda! I just caught up with all of these comments today and I thought of you right away. I couldn’t remember what your solution was and was going to email you, but you beat me to it!
Go keto-community!
Thanks for the feedback, we are working through the medications. She unfortunately didn’t like it in the heavy whipping cream with chocolate. I did get some other flavorings so we will work through it. We are seeing a difference since starting the diet which is a blessing so I will try anything to make this work.
Yes, that’s the attitude: persistence! Keep trying until you find something that works. Your daughter is going to be ok.
Congrtaulations! Thank you for sharing your journey with us…so grateful for it…so many times along OUR journey! Our 8 year old daughter is 10 months into MAD, and 3 months seizure free. I am curious why you are doing such a slow wean…….I am not sure I’d have that much patience for this! She takes one medication which she tolerates well, plus the diet. We did the diet and med increase at same time, so we are not entirely sure which is to credit, but neurologist and dietician think it is the combo. Personally, I’d be more anxious to wean the diet than the medicine. Interested in your thoughts on duration of diet and weaning process, as well as whether to wean a medicine or diet first. I have heard that the standard ” two years seizure free” may not apply to all cases….thank you!
Congratulations Melanie! That’s great news with MAD! If you can get the benefits of the diet without having to push the ratio to far and deal with side effects, you have it down. It could be the combo of medication and diet, but that didn’t seem to be the case for Nora. She was on medication but it wasn’t working, and when we added the diet she had great improvement so we pressed hard to wean the medicine after she had 4 months of seizure freedom. That was her doctor’s preferred timeline.
We could have started weaning the diet sooner or could have gone faster, but we had a few things in mind and her doctor was clear that it was up to us. First, we don’t know the cause of her seizures. The diet works for different types (also unknowns), and metabolic problems that cause difficulty breaking down carbs mean that you have to be on the diet much longer, maybe forever. Because we didn’t have a known cause, we didn’t feel like we could rule anything out and know that she would be fine without the diet.
Second, the diet was working and everyone was happy. Nora didn’t mind her food (she did some normal amount of kid complaining, but no big fights or refusal to eat). Ted and I had a routine and were find administering it, although it does take work. As long as we all were in a happy rut and it was working, we figured we’d hang out there until the 2 year mark then slow wean to give all of us time to adjust.
In the end, it seemed to come down considering both the statistical chance that Nora would still be having seizures (since we don’t know anything about her cause), and our anxiety and comfort level of maintaining the diet. Everyone’s situation is different and it really is a quality of life balance for the whole family.
Keep at it–good job!
Christy