Friday, March 26, 2010

The Theory.

Tell me who this sounds like:
The typical patient with ketotic hypoglycemia is a "toddler", a young child between the ages of 10 months and 4 years. Episodes nearly always occur in the morning after an overnight fast, often longer than usual. Symptoms include those of neuroglycopenia, ketosis, or both. The neuroglycopenic symptoms usually include lethargy and malaise, but may include unresponsiveness or seizures. The principal symptoms of ketosis are anorexia, abdominal discomfort, and nausea, sometimes progressing to vomiting.

If severe, parents usually take the child to a local emergency department, where blood is drawn. The glucose is usually found to be between 35 and 60 mg/dl (1.8-3.1 mMol/L). The total CO2 is usually somewhat low as well, (14-19 mMol/L is typical), and if urine is obtained, high levels of ketones are discovered. Ketones can also be measured in the blood at the bedside (Medisense glucometer). Other routine tests are normal. If given intravenous fluids with saline and dextrose, the child improves dramatically and is usually restored to normal health within a few hours.

A first episode is usually attributed to a "viral infection" or acute gastroenteritis. However, in most of these children one or more additional episodes recur over next few years and become immediately recognizable to the parents. In mild cases, carbohydrates and a few hours of sleep will be enough to end the symptoms.

Precipitating factors, conditions that trigger an episode, may include extended fasting (e.g., missing supper the night before), a low carbohydrate intake the previous day (e.g., a hot dog without a bun), or a stress such as a viral infection. Most children affected by ketotic hypoglycemia have a slender build, many with a weight percentile below height percentile, though without other evidence of malnutrition. Overweight children are rarely affected.

I think that the above information fits KayTar pretty well. Her episodes started in toddlerhood, they frequently occur when she goes too long between feedings or during illness, she is extremely lethargic and unresponsive during them. She has landed in the ER many times with very low glucose numbers even though she isn't clinically dry or dehydrated. I think the underlying mechanism of her episodes might just be ketotic hypoglycemia, which triggers migraine activity causing the light sensitivity and pain that sometimes coincides with them. I think this has been overlooked because we have always focused intensely on the neurological symptoms. The hypoglycemia has often been excused because she has been vomiting from the episodes or from the illness she is sick with, but lately it has become obvious that her numbers are plummeting faster and more dramatically than they should with only a minor disturbance.

To my knowledge, we've never tested her urine for ketones during an episode or at times when she has been hypoglycemic, so that remains to be seen, but I do know that her CO2 has been low during some of her hypoglycemic episodes, too. The treatment for this condition is frequent small high carbohydrate, high protein meals...basically what we have been doing for her since getting the g-tube, and surprise! The episodes have all but disappeared. Her recent "energy crises" are often fixed with Pediasure and sleep, but when she gets sick or starts vomiting, things get a little dicier and sometimes she needs IV fluids. Anyway, it is a THEORY...and nothing more at this point. However if this isn't it, I really feel like it is at least in the right zip code now. The two really great things about this diagnosis, if it were the correct one, are that we could test her urine for ketones during illnesses and correct the errors before it ever progressed to hypoglycemia AND children outgrow it by age 10 usually.

I emailed her pediatrician about it, of course. We'll see what she thinks of it and go from there!

Wednesday, March 24, 2010

(Not Quite) Wordless Wednesday: The Champ!

I actually have a LOT to talk about right now; healthcare reform passed, I have a new theory about KayTar's episodes, KayTar restarted therapies this week, I'm getting sick...but I am working on exams and everything else will have to wait until I come up for air!

For now, I leave you with a picture of the kid who won the Pinewood Derby last Friday evening! (Josh came in first and KayTar came in second in the non-scouts derby, too!) Josh was out of town, KayTar was very sick, and my dad had to take BubTar to the derby and race for Josh and KayTar. I don't know how we would manage sometimes without family nearby! Sweet little BubTar was just OVER THE MOON when he got home, telling me all about the big win. Josh was pretty adorable too, even though he was out of town, he called SEVERAL times that evening to see if I had results yet. He was so bummed he had to miss the race and I think he was almost as excited as BubTar that his boy had won first place. KayTar was thrilled to find out her little pink hot rod had won her very FIRST trophy, too. The 'Tars swept the derby! Next stop, district finals! :)

Sunday, March 21, 2010

All better!

Well, it certainly seems that we aren't totally immune from the Drama of KayTar. She was just in the hospital last month and we NARROWLY (very narrowly) escaped a repeat performance this weekend. I spent most of Friday, pacing around with a churning stomach and elevated heart rate. I knew exactly how close we were to going to the close we might be to an episode...and it took my breath away. That anxiety hasn't changed, and it likely never will. However, LIFE is different now. I used to feel like our life was NEVER normal and every time something like this happened, which was incredibly often when she was vomiting nightly from the reflux, having frequent asthma attacks, didn't have the tube and was always borderline for nutrition, couldn't go outside in the sun most days, and was having an episode every two weeks...not to mention the fact she was developmentally delayed across the board; it just reinforced how weird and stressful our life was. It felt like we never got a break. Now, we've gained so much ground, so much NORMALCY, that these setbacks don't drag us down in the same manner. Life used to be 85% abnormal and now I feel like we're functioning at a 75% normalcy rating at the very least. Maybe we're not totally normal, she takes regular medications, gets sick a little more often and gets hit harder than a normal kid, doesn't have the same gross motor skills as her peers, and has a feeding tube, among other things...but the little oddities don't totally consume our lives.

That being said, I think one of these little oddities is the rapid speed at which she decompensates from these little viruses. BubTar has NEVER landed in the hospital following any sort of illness, vomiting or not, without the benefit of a g-tube...and KayTar, geez, it seems like I blink and she's hypoglycemic and we're teetering on the razor's edge of a hospital trip for IV fluids. She vomited ONCE on Thursday, granted it was quite a bit...some of the previous night's dinner and all of the Pediasure she had ingested since...then I started Zofran and Pedialyte. There was never a major gap in fluids that should have triggered such a rapid descent. By Saturday morning her glucose was down to 53 and she was very lethargic. She woke up speaking nonsense, in fact her first words in the morning were, "Why am I on land? It is so hot...get me in the water!" She complained of dizziness, shaky legs, waves of heat...symptoms of hypoglycemia, just like last month when we went to the hospital. She was awake for about an hour, during which I gave her 4 ounces of Pedialyte, before lapsing back to deep and largely unresponsive sleep, poor thing didn't even wake up for a finger stick. Her hand barely twitched when I poked her, that was it. When she woke later, her glucose was rising a bit and I fed her 4 ounces, half Pedialyte/half Pediasure and that seemed to really help. Her behavior normalized and she was on the upswing. I continued the half/half feeds and her numbers rose and she finally peed. Her glucose was up to 85 by the late afternoon. This isn't normal, right? Do your kids tank like this with a little vomiting? We have the added benefit of Zofran and the g-tube...we can stop the vomiting (if/when the Zofran stays down, like it did this time) AND replenish fluids and yet, it isn't enough to skate through a little tummy bug. I'm not exactly sure why she bottoms out so rapidly, but I think it may be connected to the underlying mechanism that causes the neurological episodes.

Enough of that, though, she is much better now. Yesterday, she kept down 3 Pediasures delivered via the tube, and although she gave me a scare yesterday by refusing the Pediasure by mouth and saying it was "yucky", this morning she asked for a cup and has drank a bit...not enough to negate the need for tube feeding today, but enough to let us know she isn't giving up the Pediasure altogether. Good enough for me!

Friday, March 19, 2010

Sick, sick, sick.

KayTar is quite sick. Yesterday she was playing in her room and shouted to me, "Mom! I'm having energy problems! I need my Pediasure!" so I sprinted up the stairs with her cup in hand, laid her in her bed and told her to drink and listen to the radio. I came back down stairs and listened over the monitor. It was silent. I ran back up to check on her and said, "Are you okay? Do you feel weird? Spinny? Are your eyes okay?" I'm thinking "Oh shit, I jinxed her into an episode. Perfect." She said, "I feel weird. Throw up weird." UH-OH. I sprinted to the kitchen for a pan and said, "Please, PLEASE, don't throw up until I get back!" When I got back, she wanted to come downstairs to rest in her baby chair and as soon as we got to the living room, she puked a ton...into the pot, thankfully. I gave Zofran pretty soon after and she had a decent day of intake for being sick. 12 ounces of Pedialyte after the Zofran and a handful of Saltines. She peed twice.

This morning, though, she was feeling worse, shaky and hot, dizzy, unable to stand or walk. I checked her glucose, because the last time we were in the hospital, she had these same symptoms. It was 53, which isn't normal, but it isn't crazy when it has been in the 30's at the hospital. I gave her a 4 ounce bolus of Pedialyte to try and bring it up, but she wouldn't let me give her any more. She said it was making her feel sick, and I figure that keeping 4 ounces IN is better than more than 4 ounces coming right back OUT. She is still so lethargic, though, I rechecked her glucose (64) not long ago and she didn't even wake for the poke. Poor babe. I hope we avoid the hospital, but even MORE than that, I really hope we avoid an episode. When she gets like this it makes me so nervous that one is lurking right around the corner, waiting to pounce on our sick and vulnerable girl.

ETA: Her glucose is up to 85, she finally peed, and I've gotten in three 4 ounce Pedialyte/Pediasure feeds into her over the course of the day. Looks like we have narrowly escaped a trip to the ER! Here's hoping she is on the upside of this thing!

Thursday, March 18, 2010


We went to Space Center this week and when I got home and looked through the photos, I realized I had similar shots of BubTar from 2 years ago, almost to the day. I can't believe how much he has grown!

Tuesday, March 16, 2010

8 months!
(knock on wood)

Today marks EIGHT MONTHS since KayTar's last episode.

(knock on wood)

It is amazing, miraculous, wonderful. They used to torment her every TWO WEEKS. She would have had 16 in this time frame, instead she has had zero. We never thought they would stop.

I still think that the trigger is nutritional/metabolic in nature, that something isn't functioning quite right in the intricate processes of catabolism and anabolism, and that her steady intake of Pediasure is responsible for many of the positive changes we've seen in her health and development, including the decrease in episodes. The last time she was very sick, we took her to the hospital to correct her hypoglycemia and fluid imbalance sooner than we have in the past and I think that kept her from having an episode in a situation when she typically would have. Regardless of the reasons, I'm just glad they have been absent for so long and hope they continue to stay far away from our girl.

This year it is easy to get all of her Pediasures in. Every morning she gets 4 ounces of Pediasure via her g-tube before school, then we send her to school with 8 ounces in a sippy cup. She drinks it during breakfast and snack time at school and when she gets home, she finishes whatever is left and I make her a second cup. We try to get in one more in the evening. Usually by bedtime she has had 2.5-3.5 cans of Pediasure each day, along with food. Next year, in full day Kinder, we aren't sure how we will accomplish the same level of intake. It takes MANY, MANY reminders to get her to drink her Pediasure. If things are busy, she gets distracted. We tube feed her when she doesn't feel like drinking it by mouth. Next year in Kindergarten, she will be busy all the time and be in school full day and it will be a different ballgame. We don't know if she will need to go to the nurse for a full tube feeding at midday or if we need to invest in a pump for her to wear during the day to give her steady amounts of Pediasure throughout the day. We'll figure it out, I'm sure.

We're just glad to know exactly how important it is to her overall well-being, and thankful for her g-tube and the ability it gives us to ensure that she gets what she needs every day. Most of all, we're thankful for EIGHT whole months of peace for our sweet girl...she sure deserves it.

Friday, March 05, 2010

Look! We made it outdoors!

After my previous post, I realized just how frantic life had been lately and made a conscious decision to force a little more LIVING into our days.

Wednesday, KayTar returned to school, I studied while she was gone, then took her out to lunch after school and then we went on a walk together. I also made it a point to spend an entire hour on the sofa with my novel. The weather has been amazing this week, so after school the kids spent some time on the trampoline.

Thursday was very low key, I had been nursing a headache all week and it nearly took me out of commission on Thursday. I managed to do laundry, clean the house, and go through my index cards several times, though. We went outside after school to play with the MoonSand that KayTar got for Christmas. I finally cured my headache with a glass of orange juice of all things! I gave up sodas over a week ago and I guess my body did not agree with the sudden lack of sugars. After fighting that headache for a week in spite of a variety of medications, it was gone with a single glass of orange juice!

Today (Friday), I spent the morning studying, but when KayTar got out of school we went to pick up lunch and ate with BubTar at school, now I'm blogging while KayTar plays Club Penguin, and after BubTar gets out of school we're going to Barnes and Noble for new books and BubTar might be having his best buddy sleepover, too. I'll study while they entertain each other. Saturday night, we are thinking of having friends over for a game night.

So yes, I had a double length Chem class on Wednesday night. Yes, I have a lecture exam in Bio II tomorrow and then a full day's worth of class. Yes, I have a study session for Chem on Sunday. Yes, Chem will be double length again on Monday, followed by an exam on Wednesday. But it doesn't matter how busy life gets...there is always time to fit in some of the fun stuff, too, sometimes it just takes more of a conscious effort to squeeze it in!

Tuesday, March 02, 2010

Life? What life?

Here's a peek at what I've been up to for the past couple of weeks...

Monday, February 15th:
KayTar has her first sick visit at the pediatrician's office in months AND ends up in the ER.
Miss Chem II.
Miss volunteer shift.

Tuesday-Thursday, February 16-18th:

KayTar is home sick, preempting all studying and party planning goals.

Friday-Saturday, February 19-20th:
Insane party prep!

Sunday, February 21st:
The party!
Collapse into heap.

Monday, February 22nd:

Cram for a Chem II exam.
Cupcake delivery to KayTar's school.
KayTar's birthday lunch.
More cramming.
Chem II exam.
Blue and Gold Party for Cub Scouts (BubTar got a TON of awards!).
Volunteer at the hospital from 10pm-12am.

Tuesday, February 23rd:
Mourn over my Chem exam.
Read a novel.

Wednesday, February 24th:
Special Olympics Young Athletes' Day with KayTar.
Pediatrician appointment for BubTar.
Meet up with Josh briefly to pass off BubTar.
Eat in car.
Chem II.
Get Chem II grade, a miraculous 84.
Kick myself for DUMB mistake that cost me my A.

Thursday, February 25th:
Somehow I can't remember a THING about this day. Perhaps I was in a coma? I think there might have been grocery shopping...not entirely sure.

Friday, February 26th:
KayTar spikes a fever that rapidly progressed to a HIGH fever.
Biology II SI session.
Cram for Bio II lab exam.
Sleepless night with sick and HOT KayTar, fever got up to 103.9.

Saturday, February 27th:
Skip Bio II lecture to take KayTar to the pediatrician.
Drop KayTar at my mom's. (the boys were at a scout class)
Barely make it to Bio II in time for the lab exam.
Nurse a sick KayTar.

Sunday, February 28th:
Sick KayTar.
Trip to Target for boxers for BubTar and a bathmat. Sadly exciting as I hadn't been out of the house except for school or the pediatrician for quite sometime.
Dinner with my parents.

Monday, March 1st:
Sick KayTar.
Make brightly colored index cards for Bio II.
Chem II.
Volunteer at the hospital from 10pm-12am.

Tuesday, March 2nd:
Sick KayTar.
Sort clothes for Spring.

Over the next week or so, I have a two DOUBLE-LENGTH Chem II classes, Bio II SI, Bio II lecture exam, Chem II study session, Chem II lecture exam, and the start of another course...just to hit a few of the highlights. Thankfully, Spring Break is just around the corner. I'm going to need it!