About 1 year ago now Nora first entered ketosis. Oh, those were a first few bad days. She would lie on the floor moaning for toast. I thought that she might chain herself to the refrigerator until we gave her toast and jam. But we survived a long difficult weekend and came out the other side, to ketosis and the first glimmer of Nora getting better after 3 months of myoclonic seizures.

Now she has been seizure-free for over 7 months. Her seizures did not stop right away. We eased into diet therapy by starting with the Modified Atkins Diet, tightening the ratio and spreading her carbs more evenly through the day because we notice that it helped. On Christmas Day last year we had been having success for several days, but decided to celebrate by giving Nora 1/4 piece of toast as some of her carbs for the day. By the afternoon, she was having myoclonics again. So we learned to feed her a more traditional keto diet by trial and error, while consulting with her dietician. After tightening up the diet her myoclonics stopped, but she had a few more early morning tonic-clonics every month or two. After the last one in April 2012 we tightened her ratio to 3.5:1 and she has been seizure-free ever since. What a relief.

Nora has been great lately. We haven’t posted much because life has been busy and we’ve been chugging along with the daily routine. This is a case of “no news is good news.” Nora has been happy with her same-old recipes for the most part. I had done a lot of baking before our quarter started at OSU, so we had plenty of food in the freezer to make it through these busy weeks. I’ve done a bit of baking since then, but the recipes are waiting for another try before I post anything new. On top of it, a recipe for a flaxmeal-based bread fried my hand mixer (there was smoke), so that recipe will have to await new technology at our house!  Nora loved the bread and got to have some PBJ sandwiches, so I hope I can make it again and post the recipe soon.

Our one bit of news is that the kids were both sick about 1 week ago. Nora threw up once before bedtime after complaining of a stomach ache, but she was keeping down all of her Cytra so we didn’t feel that we needed to call the doctor. The next day we reduced her calories and fed her as simply as possible while maintaining her ratio and Cytra rations, but thankfully she kept everything down and felt better. A minor illness was nothing more than a few days of watchfulness and worry, but I felt more at ease because I had just created our illness preparedness plan!

For Thanksgiving dinner I made Nora smashed celery root with cream, cranberry sauce, stuffing made from her most recent flax bread, and chicken. She complained about the whole meal and we had to spoon it into her. I just had to attribute it to the pickiness of a 4-year-old. She had her Keto-Perfect-Cheesecake for dessert, so all’s well that ends well.

Now that our quarter at OSU is over, we are getting ready for the holiday season. I’m going to make some of the cookie recipes from Dawn and Tiffany at ketocook.com as the new treats for this month. I may stick with those tried-and-true recipes, but if I come up with anything new and interesting you will find it here.

Now that we are 1 year into the diet, we can look back at our ups and downs. We can be grateful that we have come this far, and the year ahead doesn’t look so uncertain and daunting. We are finally starting to believe this is really working in the long term, although there will always be a bit of uncertainty about Nora’s seizure threshold. I’m sure that will always be with us. But most of all we are so very grateful to be here with hope for the coming year. Being in the groove never felt so good.

I love Ted’s graph! A year ago at this time we were in the worst place for Nora, through October and November until we started trying the Modified Atkins Diet in December of 2011. We are so thankful that everything fell into place as it did: Dr. Wray joined Doerbecher Pediatric Neurology and started the ketogenic diet program (which was almost non-existant before then) just when Nora decisively failed her 2nd drug trial (first Keppra, then Depokote).

Dr. Wray was clearly delighted with Nora’s progress. When we discussed the “what if” scenarios of either a return of seizures or when she should be weaned off the diet, he said, “at this point, I’m learning about the diet from Nora. She’s teaching me.” He has never had a patient with myoclonic seizures that is doing as well with physical and cognitive development, and she is probably responding to the diet better than any other patient he has had on the diet. Nora is a mystery and we can only wait and see what unfolds for her. We can only be thankful that we are on the good side of this mystery.

And although she is only 4, he offered to relax her ratio if and when she is having trouble with compliance. With her great seizure control so far, he said that the ratio can be an open conversation between Nora and the rest of us. She’s happy, so I have no need to experiment to see what happens. As long as we can keep her happy and healthy on the diet, I’m happy keeping the 2 year clock ticking.

He was also pragmatic about when we start counting the 2 years. He said that she was responding to the Modified Atkins Diet last December, so he would potentially start counting from last December, even though she wasn’t seizure free until mid-April.

I have been very pleased with Dr. Wray’s pragmatic approach. We are all on the same team. But Ted and I are going to be extremely conservative on this. As long as Nora is happy and seizure free, I expect her to be in the diet at 3.5:1 until April 2014. If we have some indication that we can stop earlier or start reducing the ratio, all the better. If Nora gets ill or unhappy with the diet, we can reduce her ratio and see what happens. If she has a breakthrough seizure, we can hold the course or increase to 4:1. Decent drugs are still on the table if necessary. It’s good to know that we have somewhere to go. We have options.

After the Charlie Foundation Symposium, I came home wanting to know the underlying cause of Nora’s epilepsy even more strongly. If we know the cause, it will tell us something about why the diet is working for her and whether she is likely to develop out of it in 2 years. If we knew that the cause is something that she won’t grow out of for a long time, or ever, we can prepare ourselves and avoid the trauma of trying to go off the diet and finding out that she needs to stay on. So we will keep looking and learning. Until then, we are thankful for our good fortune of trying the diet early and keeping our fabulously unique, sharp and creative Nora.

I’m glad that Ted talked about advocacy, because now that Nora is out of crisis mode we are moving into advocate mode. I’m so glad that we started this blog, after so much encouragement from friends and family. At Nora’s last appointment with Dr. Wray, we also proposed starting a parent support group at Doernbecher Children’s Hospital in Portland. We’ve heard that this is the only keto diet program between Seattle and San Francisco, and there is no parent-to-parent support system. We felt alone when we started, but this is so much easier if we share the burden. We can reduce the start-up burden of the diet and help parents quickly surmount the learning curve, so they can move from difficult-diet-with seizures-mode into tedious-diet-routine-reduced-seizures-mode. It’s high investment, high reward if it works: saving your kid’s brain.

At the Charlie Foundation Symposium, there was a paper by Claire Chee, RN, at the Children’s Hospital of Philadelphia. We need our wonderful pediatric neurologists and dietitians on our team, but as Ms. Chee said: “We are the ‘professionals;’ parents are the ‘experts.'” We have the deepest gratitude to all of the other keto parents who have commented on our blog, giving us encouragement. Thanks for being on our team too. And thanks for including us on your team. We are here for you.

Last Friday we went to visit Nora’s pediatric neurologist at Doernbecher Children’s Hospital in Portland.  The visit went well and I certainly get the feeling the medical team there is delighted to see Nora doing well.  I imagine that is both for her sake, and also as a welcome break from dealing with parents and patients that are still struggling, or just starting down the hard road of developing epilepsies and the hunt for seizure control.

Nora is doing very well.  She is about 5.5 months free of tonic clonics, and about 6.5 months free of myoclonics.  She is now 3 months off of anti-epileptic drugs, with the diet (and several supplements) as her only treatment.  Her physical skills and development are normal.  Her vitamin D excess has resolved itself (or was a faulty test result).  Her blood is still a bit on the too-acidic side, but the doctor felt that more potassium-citrate (Cytra) would probably not correct it, and since she is feeling fine, there is no need to treat it.  Because she is doing so well the doctor offered to try her on a lower ratio!  I was very surprised by this.  It’s an intriguing possibility, but both Christy and I feel that since Nora is healthy and having no issues with diet compliance, we’ll hold steady at 3.5:1 for the time being.  But it is nice to know that our medical team is open to trying a lower ratio should we run in to any compliance issues or blood acidosis issues.

We also had an interesting discussion on what would we would do if Nora had breakthrough seizures.  The doctor said that first, he wouldn’t necessarily escalate her therapy if there a few breakthrough seizures.  And he wouldn’t necessarily re-start the two year seizure-free clock!  (All this of course depending on the severity and number of seizures.)  This is a very interesting point.  To give you some background, one of things doctors and families strive for in epileptic kids is to get them two years of seizure freedom.  Exactly two years is of course a somewhat arbitrary guideline (e.g., why not 1.75 years, or 2.5?) but it is a fairly ubiquitous standard across pediatric epilepsy.  If a kid can go two years seizure free, there is (statistically speaking) a very good chance he or she will remain seizure free, even off of anti-epileptic therapy.  But this two year goal has a funny affect on parents: when you are in a period of seizure freedom, you fear not only the return of the seizures for the sake of your child’s well being, but also the “restarting” of the clock.  It’s the boulder of Sisyphus tumbling back down the mountain.  Each week, each day, each hour of seizure freedom is so hard-earned.  There is so much energy and work and stress invested in getting to that two year goal.  To have it start over can feel like such a defeat.

But for keto kids, the expectation from the start is that they will be on the diet for only a finite amount of time.  A typical course of treatment is 6 months to 3 years, depending on the age of the child, the efficacy of the diet and the cause or type of epilepsy, if known.  Also, most keto kids are on the diet for the very reason that they have not had complete success with drugs.  This all comes together to make a more fluid and complex treatment timeline than the “two years of Keppra and you’re done” route that some kids take (to paraphrase our first pediatric neurologist).

So our plan for now is, in the event of breakthrough seizures: hold the course to see if it is just a transient (e.g., diet administration error).  If the seizures persist, increase the ratio.  If the seizures still persist, try Lamictal.  (Honestly it would feel like a major setback to put her back on a drug, but it does comfort me a bit to learn that Lamictal is not too bad.  It has a rare but severe reaction you have to watch for initially, but otherwise it seems people tolerate it well.)  It is comforting to know we have a reasonable plan in place in the case of a relapse.

The doctor said another interesting thing: that there are not many kids in the world like Nora.  There are not many kids that have drug resistant myoclonic seizures without accompanying cognitive and physical problems.  It is a bit of a mystery, but after so much bad luck with Nora, we are grateful for this bit of good luck.  In fact, the doctor said he would consider further genetic testing on Nora and compare her with the very few other kids like her to see if there is some common genetic cause for their unusual course.  I also wonder if Nora benefited from getting her on the diet quickly.  Perhaps she would have developed more cognitive and physical problems if we chased her with drugs for years before turning to the diet.  In an interview with Jim Abrahams, he laments this: that although the diet was miraculous for his son, he wishes they had known about it sooner in the course of his treatment.

Hopefully as the medical community learns more, they can quickly identify metabolic therapy candidates and get them on it right away, instead of turning to it as a last resort after years of seizures and failed drug cocktails.  There is some advancement on this already.  In some epilepsy centers, the ketogenic diet is the first line of treatment for a very serious and severe form of epilepsy known as Infantile Spasms:  http://www.hopkinschildrens.org/tpl_news.aspx?id=5324 and http://www.youtube.com/watch?v=_1Jia_2HAp0.  In this type of epilepsy early diagnosis and treatment with the ketogenic diet can effectively “cure” the epilepsy.

Let me reiterate that we advocate the diet assuming it is the right therapy for a given patient.  In many cases, modern drugs will provide good control and effective treatment.  We advocate the increased acceptance and use of metabolic therapy for patients that are good candidates for success, and that doctors consider trying it earlier in the treatment, instead of as a last resort.

Back to Nora though: we are ecstatic to be where we are.  One year ago, Nora was having many seizures from week to week, and I was a wreck.  But we fought and pushed and although much uncertainty remains, we have come so far.

Here is her updated chart.

Seizure free for almost 6 months.   Diet ratio was nominally 3:1 from Jan 2012 through April 2012.  It has nominally been at a 3.5 ratio starting at the end of April; we have not recorded the actual daily ratios.

Things are going well.  Nora is developing well and having good days.  I haven’t posted an update on the data recently.  Check out the plot.  Nora has been free of myoclonics for over 5 months (!), and free of tonic-clonics for almost 4 months.  It’s been over 3 months since we first started her Depakote reduction, and about a month now since it was completely eliminated.

(Note: after the end of April we no longer took daily records of the diet ratio.  It is currently nominally 3.5.)

Nora has now gone one month free of both myoclonics and tonic-clonics with the ketogenic diet as the only anti-epileptic therapy.

Epilepsy is tough.  I certainly wouldn’t want to say one type of childhood illness is more difficult than another.  There are all sorts of nasty things out there, and anytime a child is suffering, or their future well-being is in question, it’s distressing to a parent.  But some of the nastier epilepsies really are especially brutal.  They are relentless monsters: twisting and tormenting your child right in front of you, and striking without any warning, without any reason.  When Nora was having more and more myoclonic seizures and I was genuinely worried that she might have a progressive degenerative condition, I really felt as if there was a monster in the house.  I had a palpable sense that she was under attack, and it tore me apart that I could not defend her.  My mind would dream and create scenarios in which I could fight a wild animal to save her, something tangible that I could pitch my rage and fear and sadness against, something I could fight with tooth and nail and every breath I had if necessary so that she could be safe.

In those dark days, when I was sick with worry about what was ahead for her, about what her days would be like in 6 months, in a year, I would have given almost anything, anything, to know this day was in the future: a day when Nora was seizure free, drug free, and being a completely normal kid.

I still worry about Nora, of course.  I think I always will.  I’ll always be a little nervous that seizures will come back either tomorrow or 10 years from now.  But we all live with uncertainty.  I try not to think about the future, because it hasn’t happened yet.  All we have is the present.  As I write this, Nora’s big brother is reading to her, and they are fine.

In parallel with my anxiety for Nora is a deep sadness for other families that are struggling.  For any youtube video about epilepsy or the ketogenic diet, there will be related videos in the sidebar about the journeys of kids with difficult epilepsies.  I can’t help but watch these.  I don’t know why I can’t help myself, and the result is always the same: a crushing sense of loss and sympathy for these families.  The brutality that bad epilepsies can bring down on someone’s beautiful infant, toddler, or child is difficult to fathom.  If you can keep from sobbing when watching a parent’s memorial video for their child with Batten Disease, you are more steel-hearted than I.

The intense emotional experience of having a child with uncontrolled seizures has provided me with a connection to others dealing with the same thing.  My chest hurts when I read their stories of relentless seizures and cognitive regression, and I feel relief for them if their story has a happy ending.  We know exactly how a family feels when seizures come on unabated, and how desperately and madly we search for a reason and a treatment or anything, anything to make it stop, to save our kids.

I wish Keppra and Depakote had worked for Nora.  I wish she had been one of the 70% of kids for whom seizures are well controlled with medication.  And really, without a control group or the ability to run a parallel experiment, it is impossible to say what benefit she really got from them.  We think she failed those drugs, and we suspect Keppra aggravated her seizures, but who knows?  Maybe she’d be even worse off if she had not had those therapies.  The point is, we certainly did not turn to the ketogenic diet out of some sort of anti-pharmaceutical or “natural” mindset.  We turned to the diet because first-line drugs had failed to completely control her seizures, and the ketogenic diet has a good track record with refractory (drug-resistant) epilepsies, and myoclonic epilepsies.  We turned to the diet because we felt it was the next best option for Nora.

The ketogenic diet has an interesting history.  It was actually one of the first consistently successful therapies for epilepsy, developed almost one hundred years ago.  The inspiration for the diet was the observation that epileptics that were starving or fasting tended to have less seizures.  This inspired a doctor to create a diet that forced the body into a starvation (i.e., fat-burning) metabolism indefinitely; this state of metabolism is called “ketosis.”  However, by the middle of the century the diet fell out of favor as the drugs got better, as it was much easier to take pills than follow the unforgiving precision and restrictions of the diet day after day.  The diet fell into disuse, and the few in the medical community that where still aware of it discounted it as obsolete and too difficult.

In the early 90s, the movie producer Jim Abrahams (Airplane, The Naked Gun, Hot Shots) had an infant son named Charlie that developed a particularly nasty epilepsy. They struggled with many different drug therapies without good results and the prospects for Charlie looked grim.  Then Jim came across a textbook that described the ketogenic diet and the Abrahams family was able to convince his son’s medical team to try the diet through the Johns Hopkins hospital.  Charlie had almost instant seizure control.  And after many years on the diet (and some bumps in the road) he is now a seizure free adult. Stories like Charlie’s, and many others who have used the ketogenic diet successfully, give us hope for Nora’s future. Looking at the plot above and counting Nora’s seizure-free days, we can turn from fear to hope.

The Abrahams family established (and continue to support) The Charlie Foundation.  The Charlie Foundation endeavors to promote the ketogenic diet amongst the medical community so that doctors are aware of it as a tool alongside the standard drug treatments.  Certainly everyone on the ketogenic diet today owes something to The Charlie Foundation for making the diet visible and accepted again.  They have a yearly symposium as well.

Exactly how the diet controls seizures is not known.  There are conjectures that ketones may be inhibitory for neural activity, or that fat stabilizes and protects neurons, amongst other ideas.  Perhaps soon the mechanisms of the diet can be discovered, and this will allow refinements to its administration, or the development of new drugs that can bestow the benefits of the diet without the side effects.

We want to recognize and thank the Charlie Foundation for providing tools and information for the care takers and doctors of epileptic kids, and for providing this symposium where professionals and parents can discuss the technical and practical facets of the diet and its administration.  (We’d also like to recognize The Charlie Foundation’s sibling site Matthews Friends.)

Nora may have more bumps ahead.  Even kids that are considered smash successes on the diet sometimes have bouts of seizure relapses.  I hope that doesn’t happen, but I must accept that it might.  And if it does, we will keep going.  What can we do, but go on?  But it is great comfort to know the diet has bought her this crucial time, that it will probably continue to work for her and benefit her and brighten her future, just has it has worked for many other kids and adults.

Nora is no stranger to medical check-ups and procedures. In the times she has visited the dentist (the first time for chipped teeth at the age of 2), she is a cheerful breath of frilly fresh air in the office. She is fascinated by the tools and procedures. She wants to be a doctor when she grows up. Her yearly check-up 2 weeks ago was no exception to her happy visits, but came with bad news: cavities. 4 cavities.

How, you may ask, does a child who eats no refined sugar and consumes 10 g of carbs per day, with only part of that in the form of natural sugars, get cavities? I am still asking myself that question, but the only answer seems to be genetics. My genetics. Ted has crooked teeth of steel. I have straight teeth of marshmallow. I always have cavities and always feel guilty, like I somehow should be able to prevent this, but even with my best efforts they still show up. When your kid has cavities, the guilt is magnified. What kind of parent has a 4 year old with cavities? Yes, as a matter of fact, I DO brush her teeth daily. Will they call child protection?  Although they do not say or suggest such things, I can’t help but feel at fault.

Now that Nora has cavities while consuming no sugar, I will forever attribute our cavities to genetics. The dentist conceded as much last time I was under the drill. Anders as escaped so far, he must have Ted’s iron teeth and they seem to be straight. Poor Nora will probably get the worst of our genetics, cavities and braces. Sorry, kiddo.

Nora was a peach at her checkup when they found the cavities, so they scheduled her for a cleaning and fluoride last week to get her used to working in her mouth. She was a super-star for the cleaning too. No problems at all. Before the cleaning, the dental office showed me the packages for the polish and fluoride varnish at my request. One had xylitol and another had sucralose. To be safe, Nora’s dietician recommended that we decrease her carbs by 3 g on the day of the cleaning to account for the tiny bit of carbs (or blood sugar effects) in those non-sugar sweeteners. Everything went smoothly and Nora stayed in ketosis. We were relieved.

The dentist recommended that we wait until January to fill her cavities because they were so small. That way she could have one more cleaning to get comfortable. But after her first great experience, I moved up the appointment to today. She was positive about the dentist, so I decided to just get it done this summer when we are less stressed by work and school.

With such small kids, the dentist prescribes an oral sedative that contains sorbitol (a sugar alcohol). Again, Nora’s dietician recommended decreasing her carbs by 3 g today to account for the carb-like affects of the sugar alcohol. This was a little more stressful because Nora was not allowed to eat for 3 hours before the appointment. She went into the office on an empty stomach, drank the sedative, then it was over an hour until we were home and could give her some fat to balance her ratio. She was also starving, on top of being miserable from the fillings. I made her 2 T of heavy cream mixed into a bit of vanilla tea as soon as I could and she sucked it down through a straw (spilling some from her numb lip). She also ate up 50 g of avocado and kept asking for more food. When I did a keto reading in the evening, she was still at a solid 160+; strong ketosis. Hopefully we averted any possible loss of ketosis, but we should know by morning.

After taking the sedative, it was like Nora was drunk. She couldn’t walk straight but demanded to be put down. When she got into the chair and chatted with the hygienist, she started listing her friends, “Sabina, Dalya but she moved away to a town for away and I can’t see her anymore, Connie, I play with her toys, and Kevin, he lives with Connie, and Ingrid, she has 2 beds and a big sister, and Cora and Mike…” She went from being kind of a belligerent drunk to a sentimental happy drunk to an angry drunk by the end of the appointment.

And I don’t blame her much for that. The dentist went as quickly as he could, but it’s still a long time for a little person to sit in the chair with her mouth held open. They gave her novocaine and nitrous oxide as well, so she had the “monkey nose” on her face the whole time. By the end she definitely felt something as he was working, but he was so close to being done that he finished with the filling and didn’t give her more novocaine. I know how she feels. It was agony to watch her have to endure it. I held her hand at the end and picked her up as soon as I could, but she was an unhappy camper. I’ve seen this kid through some torturous procedures for a little person, and I’m ready to be done with it. She’s ready to be done with it.

When he started with the fillings, he called me closer and said that there were 2 more tiny cavities starting in 2 other molars. She ended up with 6 fillings today, rather than coming back and do the next 2 more in 6 months or 1 year. These are baby molars, so she will lose them. I hate to be pessimistic, but that’s only an opportunity for more cavities. Now that we know this about Nora, I’m all about as much prevention as possible. Regular fluoride varnish, sealants, whatever it takes. I’m on prescription super-fluoride toothpaste myself now. Time will tell if any of it will make a difference. Maybe by the time Nora has kids, they can opt for bionic teeth from the get-go or do gene therapy to ensure iron teeth. I’d give that to my kids if I could.

We are happy to report another milestone in Nora’s diet therapy success: 14 weeks seizure-free–over 3 months! And even better, one week Depakote-free!

She had her last dose of Depakote last Tuesday night, July 24. Since then we have continued with the same bedtime snack and ritual, minus the Depakote “sprinkles.” As we eliminate Depakote, her doctor also wants us to eliminate her carnitine and folic acid supplements; he saw them as combatting the side effects of Depakote, not necessarily the diet itself. She is down from 3 carnitine tablets per day to 1 now, although I think we will keep that one for a while longer, as our supply lasts. Some doctors also use carnitine as a matter of course with the diet itself, and it is a simple dietary supplement that does not have unwanted side effects. We will update the Current Therapy page with the new routine.

Ending her anti-seizure medication mades us anxious, of course. There is extra pressure to be hyper-vigilant with the diet to maintain seizure-freedom. But it also makes me think ahead to the day when we wean her from the diet as well. I imagine even more anxiety and anticipation for all of us, except maybe Nora. She is happy to be done with her “sprinkles” medication, but it’s absence is not a cause of celebration every day now. It’s just the new normal. Just like being seizure-free.

Sometimes Nora says, “I’m going to be on my diet forever.” We also heard this about taking Depakote sprinkles (and cleaning up toys). My strategy is to remind her that it will not be forever, certainly not until the end of her natural life plus all eternity, but it will be for awhile longer. Her four-year-old-self can’t conceive of measures of time like months or years, or all eternity for that matter. After the reminder that it will not be forever, I try to turn the sentiment around for her by emphasizing the good things in her diet, although mentioning seizure-freedom is a little lost on her too. Instead I emphasize the good parts of the diet that she does experience every day, and last week I got confirmation that it works sometimes:

Nora [whining]: I’m going to be on my diet for-EV-er.
Christy: It’s not forever, darling, but it is awhile longer. And just think of all of the good things that you have on your diet. You like your PBJ muffins, right? And cheddar crackers?
Nora: Yeah. Will you still make me PBJ muffins when I’m done with my diet? And cheddar crackers?
Christy: Of course I will. They are really good, aren’t they. I like them too.

Nora helps mix up a batch of PBJ muffins

Except when she is off the diet, I will not mix the peanut butter down with an equal amount of butter. And I won’t weigh out 5 g portions before baking the cheddar crackers; I will just plop down little blobs of dough on the baking sheet. That will be a good day. And I will share some too.

This is a big doctoring week for Nora. First thing yesterday morning, Ted took her in for her 6-month fasting blood draw to be sure that her body is tolerating the diet well. Having done this a few times now, we know that there are a few people at the lab who are able to get her little tiny veins the first time. That saves a lot of time and misery, but she is so brave and such a good sport.

Right after her blood draw, I took her to her regular pediatrician for her 4-year check up. She’s right on in her growth and development–about 78th percentile height and 72nd weight, healthy BMI. She’s growing as expected; the doctor did not think that the diet has impacted her growth at all so far. Chatty Miss Nora charms everyone with her observations about everything around her. She was also able to do the eye test by reading the letters on the chart!

The lab also needed a urine sample but was not able to get one when Ted had her in for the blood draw, so I was able to catch one after the doctor’s appointment and take it up to the lab on the same trip. As we were on our way out, a lab-coated young man chased after us and asked us to come back for one last thing. The tech made a mistake when doing the first blood draw, and they needed a little more blood to do one more test. Boo. There is one tech who has formed a sweet bond with Nora and chatted her up while they prepped everything. It wasn’t until the needle was about to go in that Nora realized that they were going to poke her again. The super-skilled tech was able to get her vein on the first try and finish it up. He mentioned that there were some rare tests in the order so he mis-calculated the number of vials of blood they needed, as different tests go out to different labs.

As we were packing up I told the techs about Nora’s condition, the diet, and the reason for her many blood tests. They thanked me for sharing and were so happy that she is doing well now. It must be tough for them to see little people come in for big blood tests and have to guess at why they are there, especially when they are so sweet and form a bond with their repeat customers–I am sure they are trained not to ask about medical issues.

Nora was a super champ through it all. She went home with an extra Barbie bandaid for later, another blue tourniquet (seat belts for her babies), and another squishy purple latex glove filled with water. She also told everyone she met that she wants to be a doctor when she grows up. That would be fabulous.

Next we are off to see Dr. Wray at the Keto Clinic at Doernbecher Children’s Hospital in Portland on Friday for a check-up and to go over the blood test results. Nora adores Dr. Wray and keeps asking when she gets to go see him. We will also bring Anders this time and plan to get some fun in on this trip, possibly going to the zoo or OMSI.

I added a separate page to lay out Nora’s current treatment and supplementation.  See the tab “Current Therapy” above.