Trauma/Drama/Excitement: We went on our first family vacation with all four of our boys.

Prep work: I made sure to pack for every conceivable medical emergency. Along with our “normal” medical supplies we accessorized with a feeding pump and bags, extra gastrostomy tubes (not just the extensions), dextrose, etc. Plus, I mapquested our route to/from the airport, as well as the closest hospital with decent online reviews- since I will never entirely trust Naggie Maggie GPS ever again! Oh, and of course the closest In-n-out Burgers. Mmmmmmmm. I think I’m drooling thinking about it. You eastern folks have no idea what you’re missing.

Wednesday: Flight from Boise to San Diego

What we learned:

Southwest Airlines doesn’t charge for your first two checked bags, or medical bags, and they’re VERY kid friendly. Loved them.

It took 15 minutes to test our liquid Prosobe, but the airport screeners didn’t even blink at our 15 pounds of white powdered substance in individually marked by gram ziploc baggies, or our gram scale. I also caught some slack from the screener for bringing an “excessive” amount of liquid on board for such a short flight. I had enough to make it through the day, as well as one extra unopened can in case someone got airsick. She also implied that a good mother would have her kid off infant formula when he’s 2 years old. I tried to explain, but she really didn’t care. Someday, I might forgive her- I’m sure she’s already forgotten me.

Screening is also MUCH easier when you have a 1-on-1 ratio of adults to GSD kids. It was nice traveling with family.

Where to stay: My parents rented a large, beautiful house for all of our family to stay in.

What we learned: Having a kitchen to prepare and store food made the GSD dietary restrictions and schedule much easier (and cheaper) than trying to eat out for every meal like we would at a hotel. I’m a fan.

Thursday: San Diego Zoo- Fun! Fun! Fun! The boys loved the animals, especially the polar bears and oddly enough otters.

What we learned: October is “kids get in free” month, AND anyone with a “disability” is allowed one person to accompany them for free. I had a fabulous note from Dr. Weinstein, but all I really had to say was “life-threatening disease” and bada-bing bada-boom, we were all in for free.

Monkey leash backpacks are the best invention since bolus feeds.

Bring your own food, and test blood sugar frequently. The boys’ blood sugars dipped a bit from all of the exercise, excitement and fun in the sun.

The San Diego Zoo does not use plastic spoons. Their spoons are made out of cornstarch. I wanted one for a souvenier, but we didn’t get around to it.

Rehearsal Dinner: Skip forward a couple of hours and we’re showered and at the Rehearsal dinner. It was an absolutely beautiful site, but the kids were pretty tuckered out and rather crabby, and let’s face it, Ben and I were up with 2am cornstarch too, so we weren’t exactly chipper either. Given the circumstances, they were very well behaved. I will forever be thankful to my husband who walked the kids around (and got some fabulous photos of the them) so I could be with family I don’t often see. Seriously, he’s amazing.

The dinner itself was a little tricky to get to in downtown San Diego, but the food and company were great! It was about 11:00 our time when we got back to the rental house, exhausted. By the time we got all of the kids in bed, all of the med supplies unpacked and cleaned, more formula mixed up, and all of our nighttime cornstarch layed out it was closer to 1:00. We decided to just stay up and watch something on Hulu until 2:00 starch.

What we learned: Never leave your medical bag in a room that is possible to be locked up before you leave. I’m getting pretty good at mixing/ administering cornstarch in the car. And, it’s easier to stay up until 2:00 cornstarch, than it is to wake-up for it.

Friday: We did another ½ day at the zoo, and then took on the beach for a couple of hours- after yet another stop at In-n-Out. Ahhhh.

What we learned: Ethan is a beach-aholic! It was nearly impossible to get him out of the waves, even though it was cold and rainy. Dallin dislikes the beach almost as much as his mother. We stood on the shore in a couple of jackets shivering and in charge of frequent blood sugar checks, snacks and towels. Kudos to Ben for sticking it out in that water with three boys for as long as he did.

Friday night: We had a very fun “out of town guests” Hawaiian party hosted by my brother and his bride. Fabulous food, balloons, a wii, and even a bounce house. It was a great time to mingle with all of the out of town family that came to celebrate. We even had a chance to show off a g-tube so someone could compare it to their mother’s g-tube.  

http://www.diabetes.org/uedocuments/df-dog-feature-0308.pdf

Next week we will prove even crazier than we already thought we were. If all goes well, we will begin… 24 hour cornstarch. This is only particularly nuts for us because that may mean getting up every two hours at night to feed him, every three hours at night to feed Jonny, and every 4 hours for Mark and Ethan. Oh, don’t forget we still take Luke (the 25 pound “puppy”) out every 4-5 hours as well. Can we say “night of the living dead”? Fitting for Halloween, don’t you think?
This time last year, Jonny was also 9 months old, so, we began the same process. The difference? Jonny’s blood sugar went totally crazy, and he had many, many, many explosive poops with just 3 grams of starch. Apparently he was among the 20% of GSD babies that can’t handle cornstarch by 9 months. I thought for sure I was doing something horribly wrong, and so we gave up for a while, but tried again the next month- several times. Each time it was a “poopy” experience. We were finally able to get him on 24 hour cornstarch when we went to see Dr. Weinstein last May. It was still difficult to believe that that much feces could come out of such a small cute kid, but at least his blood sugar held, and the diarrhea gradually lessend and eventually dissapeared over the next few weeks. The trip home was considerably better hypoglycemia wise, but I really could have done without changing his diaper that many times on airplanes and in airport restrooms. I have a feeling the other travelers felt the same.

Our son Ethan just had his fourth birthday, and received a thoughtful and creative gift from his “girlfriend” Karlee. She understands that we are training a dog that will (hopefully) be able to help the boys when they get sick. So, she built him an awesome robot out of tin cans- in case Luke doesn’t work. Ethan loves it!

The boys got sick, again, last week and Dallin (the baby yet to be put on cornstarch) has had crazy blood sugars. His blood glucose dropped down to 60 last week, so while we were treating it we had Luke come over to him. I gave the command “Luke, check” and then let him lick the baby’s feet which is something we normally don’t allow. All the boys had gathered for the drama, but Ethan bolted from the room, and quickly returned with Karlee’s robot. He carefully placed it next to his little brother and commanded “Robot, check! There Mommy, Dallin will be O.K.” Score one for Mr. Roboto.

The other evening Mark, Ethan and I went for a walk around our neighborhood. When we finally made it home, it was time for bed, bedtime snack, Jonny’s cornstarch, and to warm Dallin’s bottle. We put Luke in his crate, Mark and Ethan had started eating, and Luke freaked out. We decided to see what was wrong with him, so we opened the crate. Normally, Luke just sits there and waits for us to attach his leash. This time he bolted downstairs just like the first time he detected a low blood sugar. So, we tested Jonny first since it was time for his cornstarch anyway. He was fine. Then we moved on to Dallin- he needed to eat, but he was still in the upper 70′s. Then we tried Ethan, he was good. A little disheartened, we weren’t going to test Mark. After all, he’d been eating. We decided to anyway, just for good measure. Bingo! he was at 74 and since he’d been eating for a good 10 minutes, he must have been lower than that. Score 3 for Luke (he’s done this twice before).

Today Rebecca came over to help us train Luke. It was great! I can’t believe the stuff she can do with him. He still has a lot of work, but he’s doing a lot better than I was expecting him to by now. She did some set ups with him by placing food on the kitchen floor and then correcting him if he went for it. It only took a few tries before he was smart enough to want her praise more than the food. We also played hide-and-seek with the boys. She gave them a treat to hold and then told Luke to find that child. Needless to say, all the boys (including the four-legged furry one) want to play again.
After we brought the dog in from training outside, he bolted for the living room where Mark and Dallin were. The first reaction is to correct him, but he started acting hyper and spazzy in a really weird way. It’s difficult to explain, but it was different from just a dog that got too excited. I knew Mark hadn’t been eating very well today, and he’d been playing outside in the cold (both of which can drop blood sugar) so I decided to test him even though Luke wasn’t acting as crazy as he usually does when someone is low. Mark was fine, and Dallin still had another 30 min. before he was due for his next bottle. I went upstairs and got Jonny out of bed etc. But 10 minutes later, while Luke had calmed down a bit, he was still acting strangely. So we tested Dallin. Rebecca knelt on the floor with me, and Luke came over and started licking Dallin (which is usually not allowed) and nipping at Rebecca’s ear. Ya, weird dog. My dad joked that Luke must be jealous, but Dallin’s blood sugar turned out to be at 56, which means he was probably around the 75 mark when Luke started acting crazy in the first place. AAAHHH! We immediately gave Dallin dextrose to boost him, as well as his bottle, all the while letting Luke lick him and giving the command “Luke check” with a healthy dose of praise. I of course didn’t remember to give him a treat until after we got Dallin under control, but Luke seemed pretty happy with just the praise- and me finally getting the hint to take care of Dallin.

While he didn’t do a full scale “freak out” like he has when Mark and Ethan were low, I theorize, that is simply because Dallin gets to the 75 mark pretty much every 2 hours, so it isn’t that weird for him. He also knows that we’re more careful with how we let him interact with Dallin.

So… that brings the total score for Luke up to 4 (including the other two times) and Mr. Roboto 1. Well, at least the Robot is a cute decoration, and he doesn’t eat nearly as much as Luke.

I’ll start with reflecting on how we came to the decision that a dog was a good move for our seemingly already maxed out household. Every Sunday our family watches the show “Nature” on PBS. Last season we were watching the episode “Dogs That Changed The World” and were suprised to find a section on Medical Dogs. The story told of Delta, a German Shepard that is able to detect the changes in it’s owner’s body chemistry that occurs when he experiences low blood sugar levels. We of course started to think immediately of the benefits for a child with GSD and what the possibilities of having a dog trained and disciplined specifically for detecting the onset of hypoglycemia.

Over the next few months we began our research. We talked to trainers and breeders alike trying to determine if it was possible. The answers varied, but the overall conclusion was that if there was a detectable scent that the body produces when hypoglycemia start to kick in then yes, it was possible. We even found an organization based in California called Dogs4Diabetics that specializes specifically in training dogs to be companions for diabetic patients. Our immediate response was “Eureka!”, but we were disheartened to find out that they were only working with people in Northern California and would only train for diabetic patients. We however didn’t give up.

We found a local trainer that was willing to help us train a dog, but it seemed very iffy that he would be able to help the dog specifically target a response in low blood sugar and it would not be a cheap venture. So, we continued our research and questions. We also shared our idea with Dr Weinstein and he seemed optimistic and excited about the prospect. In fact, during our last visit to Florida we entertained the idea of adopting one of the GSD malteagle pups (that didn’t end up with GSD), but the breed didn’t seem ideal for what we were looking for.

We started to talk to the kids about the prospect of getting a dog-naturally, they were excited. We decided to set a goal to find a dog and started praying for help in finding one that could detect low blood sugars. To our surprise the boys were very diligent in keeping the request in their prayers.

Finally, in July, we came in contact with Paula DeVaney with Genesis Service Dogs (ya that’s GSD too), a local organization that raises labradoodles for various service dog organizations all over the country. Surprisingly, they knew of and had even donated to Dogs4Diabetics! Paula also had a litter of 13 newborn pups that would be ready to leave their mother the end of August. Ironically, it was the uncle of this litter that had been donated to Dogs4Diabetics. No doubt that if we were going to move forward with the decision to incorporate a dog into our family’s lifestyle this was the opportunity which we had been petitioning the Lord for, and working towards.

Since we would be raising the dog to be a service dog, Genesis Service Dogs allowed us to sign on as raisers for the dog with the option of having the dog donated to us if it all worked out. Again, another ideal situation for our family.

A few weeks before it was time to pick up the new puppy we started to attend weekly training and instruction on what we needed to do as a family to correctly condition the dog. Then the time came to pick up the dog. Our oldest son, Mark, being a Star Wars fan had finally decided on naming the dog Luke after contemplating the names Yoda and Chewbacca.

We brought the labradoodle home and he began to impress us immediately. He was rather well behaved for a new pup and took reprimand well. Despite the good behavior of the dog the load started to take it’s toll by Friday. Yet, we were given a glimpse of the possible benefit of sticking with it.

Our kids started to get sick and Ethan went to bed early. With the bustle of the day we didn’t think much of it. After the kids were in bed and the dog in his crate we heard Luke barking and acting very peculiar (he had to this point been very laid back and rarely barked). After a minute we decided we better see what was the matter. We opened his crate and he bolted out of the room and downstairs. He seemed flustered and disoriented. We weren’t sure what to make of it. We let him outside to relieve and took him back upstairs. He was still antsy and we wondered what had happened to cause the alarm.

Ethan then awoke and was in a cold sweat. We checked his sugars and they were at 40. We immediately began emergency procedures to get his blood sugar levels back into the safe zone. After we got Ethan’s blood sugar under control, Luke seemed to finally relax.

Of course, we are trying to be objective in working with Luke. We recognize that this episode could be a coincidence, but the experience has given us “a new hope” that Luke will be able to detect hypoglycemia. It also reminds us that God is blessing us in our efforts to take care of our children to the best of our ability.

When our older boys were first diagnosed with GSD our former GSD specialist put them on cornstarch every four hours during the day, and then on a continuous feed during the night so that we could “sleep through the night” (any GSD caregiver will now, undoubtly, be laughing hysterically at the thought). The dream of sleeping through the night turned into a nightmare. The boys would toss and turn so much during the night that the tube on the feeding bag that connected to the g-tube in their stomach would invariably come apart during the night. This is bad for two reasons.
#1. It means the boys aren’t getting enough calories to keep their blood glucose levels up, and
#2. With the tube unkinked, it means that any formula in their stomach could now leak out through the same tube.

I believe I can speak for all GSD 1a parents out there when I say “AAAAHHHHH!!!!!”

To help prevent the tubes from disconnecting, we used every type of tape we had, including, but not limited to, masking, medical, electrical and even duct tape. It helped, but we were still up at least once a night to reconnect the tubing and change bed sheets where the formula had leaked. We also bought a bed wetting alarm pad which was the best thing we could have done. If the tubes came apart, they would leak on the pad which would then send an ear-piercing alarm to wake up the parents while the boys slept peacefully through it. It definately isn’t fool-proof, but it does help considerably.

To make things worse our former specialist did not know, and therefore did not tell us, that when a person with Glycogen Storage Disease type 1a is put on a feeding pump their insulin levels raise to balance their blood sugar. When you discontinue a continuous feed, their insulin levels are still set at high, and their blood sugar drops even faster than it normally would without food.

We were told by our former “specialist” that the best way to transition them off of a continuous feed was to simply stop the feed and give them a dose of cornstarch in a couple of hours. There was also no need to test their blood sugar since they were just getting plenty of calories while on the feeding pump. It should come as no surprise then that while the boys were significantly more active and alert after being put on cornstarch, within a month or so their progress had again plateaued.

After a year of incomplete GSD treatment we were finally able to go to Florida and see Dr. Weinstein. What a wonderful experience. The boys gained more from his treatment than I ever thought possible. They still continue to improve. They both had huge growth spurts, and their minds have been much more alert. My oldest son had 3 therapists at the time that all independently mentioned that he had improved more in the first month right after Dr. Weinstein, than he had in the entire 9 months they had been seeing him previously. What more of a testimony to do 24 hour cornstarch do you need?

Genesis Service Dogs of Boise, Idaho very generously donated this puppy to us. Not only did they give us an extremely intelligent and well behaved canine, but they are also donating their time and talent once a week to continue to train us and him. He has many very strict, yet important rules that we must follow, such as “no people food”, “no rough housing”, “only relieving on hard surfaces” etc. GSD (Genesis Service Dogs) is also letting us use their very expensive training equipment, as well as paying for all of his veterinarian services. The only thing we end up paying for is food. They are such compassionate people. Of course, there is no way to tell at this point if he will be able to detect hypoglycemia, but his uncle was raised by this group and eventually donated to Dogs 4 diabetics where he was successfully trained to detect low blood sugar, so I am full of hope.

We’ll keep the blog posted as to Luke’s progress.

Our third GSD little guy has had diarrhea for a week. Our youngest little GSD one has had a stuffy nose. On Monday, when transitioning our youngest off of his feeding pump and on to eating from his bottle to control his blood sugar, he decided to throw up ALL over me. Great. Oh well, “I guess he’ll just have to be hooked up to his feeding pump for the day.” After having the boys’ two caregivers hook him up for me, I went upstairs to shower off the vomit.

Even on the continuous feed he couldn’t keep anything down. I came downstairs and immediately freaked out. Every time that maniacal little wheel on the pump would turn, so would his stomach. So, I paged Dr. Weinstein. In three minutes he called back and after explaining things, he instructed me to get him to the E.R. and start and I.V. at a particular rate. Of course, I couldn’t find his emergency letter. They’re normally filed carefully, but for some reason all four have disappeared. Nice.

Thankfully, I had two very wonderful caregivers who could take over feedings and schedules without a hitch. My sister Leslie caught the “There’s something weird at Jill’s house” vibe and showed up about five minutes after I had left. Jen had the older boys at the park across the street, and Danielle was busy mixing up the next cornstarch doses. All was calm and under control.

Fast forward 20 minutes as I race into the Emergency Room in Meridian. I think about cutting in front of a nice old lady, but figure it would be best if I at least pretend to be somewhat calm and sane. Finally, I can speak to the receptionist.

“My son has a rare metabolic disease called Glycogen Storage Disease. He’s throwing up and he needs an I.V. NOW.”

The nice girl surveys me and is prepared with her standard reply “Here is some paperwork. Have a seat and when it’s your turn…”

“No, I am not going to have a seat. My son is at risk for a hypoglycemic seizure, or even death if I can’t convince you to get him an I.V. now.” Yes, I am that melodramatic when under pressure. I can’t help it.

Out comes a very nice looking nurse who looks at how young I appear and says “This looks like your first little baby. I know throwing up can be scary, but he looks great. Dehydration doesn’t…”

At this point the baby smiles and coos. I flash a g-tube and repeat my speech. She takes us right back.

After doing my best in a somewhat panicked state to explain to the doctor on call exactly why we were here for “just throwing up” he smiles politely, says he’ll write up an order for an I.V. and leaves the room. I’m pretty sure he called our pediatrician right away, just to confirm that I wasn’t off my rocker. The I.V. is placed, the baby is playing happily on my lap, and we are admitted into the pediatric ward upstairs. I am once again as calm as I ever am with a sick kid.

I love St. Luke’s Meridian hospital. Well, as much as anyone can love a hospital. After being admitted, the nurse comes in with a warm welcome and asks how our family has been the past few months. Apparently she had treated one of our other sons when he had Rota Virus in March- and still remembers us! She even remembered that they put us in the same room as last time. Her C.N.A. and everyone else who came to treat our baby for the next 3 days he was there, remembered us. There was only one other baby in the unit and we had plenty of attention- which was good considering he had to have his blood sugar tested every half hour. Every time I turned around someone was asking if they could bring me something. A far cry from downtown Boise where the nurses are so busy I have to stand in the middle of the hallway until I can catch someone mid flight to reset the I.V. so his blood sugar won’t drop. They’re excellent nurses, just exceptionally busy.

My husband brought me something to eat about 4:00 which served as breakfast, lunch, and dinner. Thus ended Monday.

Tuesday my husband needed to be at meetings at work, so he brought me breakfast and we had a chance to speak with Dr. Joyce, our pediatrician. Later that day my mother-in-law swatted a few locusts by taking our oldest son to his therapy appointment in the same building our baby was staying. She came up to see me during his sessions. My sister Leslie also showed up to bring me lunch and work on a PowerPoint presentation for my oldest son’s school about GSD that I will be giving on Monday. My sister-in-law Bonnie also came back from Utah to help us with the boys for a semester, and she stopped by the hospital on her way to wish us well. She later told me that as she entered the hospital, that she recognized the number and said “Isn’t that where they were last time?” They laughed and nodded – there is now a joke about that being the family suite.

We were finally released Wednesday afternoon, although our baby is still on a continuous feed. That night we had a meeting with Genesis Service Dogs (ironically, also nicknamed GSD). They will be giving our oldest son a labradoodle puppy and will help us raise him to be trained to detect hypoglycemia. We will be meeting with their group once a week and doing some pretty hard core training at home. Huge responsibility, and extra expense, but they are very charitably donating a crate, feeding dish, etc. as well.

Thursday morning I had my wisdom teeth taken out. While at the doctor’s office, one of the boys’ caregivers called and reminded us about another therapy session that morning. One graciously took him and our second son, while our other caregiver stayed home with the other two boys (the baby still on a feeding pump). When I got home I was too swollen to take pain killers and was, as anyone who has had wisdom teeth removed will tell you, miserable. Danielle, the boys’ caregiver who stayed home, had recently had her wisdom teeth removed and knows all the tricks to make me as comfy as possible. At the worst point I heard a knock at the door, and I knew instinctively that it would my friend Jenny. She didn’t know any of this was happening, she just stopped by to see how things were going. She took care of bringing us dinner that night, and helping with kids since my husband had to work late again. Sister-in-law Bonnie was also here helping with the boys since I can’t bend over to give them their cornstarch… or pick them up… or talk and tell them not to do something stupid like dancing on the dinning room table…

My sister Leslie showed up last night and helped with dinner and starches as well as some more work on our PowerPoint presentation. Bonnie watched kids while we videoed how we “starch” the boys via their g-tubes. We also wanted to video tape replacing a g-tube, but I wasn’t feeling well and declined. All of a sudden, right before we put away the video camera, one dramatically fell out anyway, so we were granted the opportunity to tape me explaining how to replace a g-button, all the while, I was looking like a deranged chipmunk . Then when it was time to put the boys in bed, a breaker tripped and we lost power. How grateful I was that Bonnie happily tripped out to our garage, shoving around dusty suitcases to find the circuit breaker box and fix the problem.

One of my all time favorite caregivers also had to quit because her college schedule was too packed. Not unexpected, but depressing none the less. Thankfully Bonnie gave up a scholarship to Utah State University because she felt she needed to be here with us. Can you believe that??? Our Home Health agency hasn’t been nice to her in the past, but suddenly they’ve replaced the evil dragon boss, and hopefully things will be better managed now.

Today, my husband had volunteered himself as well as our older two boys to help clean the church house. I couldn’t take care of the two little ones by myself, so who showed up but Bonnie and my brother-in-law Andrew to help wrangle the boys.

In conclusion, I just want to thank everyone who has helped us, is still helping us, and who will continue to help us. We don’t mean to wear anyone out (but that regrettably happens, nevertheless), we’re just so grateful that whenever things seem dark and hopeless there is always an army ready to destroy the locusts that occasionally plague our family.

We told Dr. Weinstein (www.glycogenstoragedisease.com) our woes and he offered to call the school on our behalf. He had a 20 minute conversation with the principal on the phone, came back into the hospital room and said “I just spoke with the principal. He’s a good guy and very reasonable. You won’t have any more problems with the school. I was ecstatic- yet slightly skeptical.

We had our son’s IEP meeting the following Monday. We didn’t have ANY problems with the school. He has an aide assigned to him and one other child with “redirect ional” needs. In retrospect, I think this arrangement will actually be better than a one-on-one aide. I hope it will make my son feel a little less conspicuous, while at the same time providing adequately for his needs. We will also be having a “training” meeting shortly before the new school year begins. The principal suggested that he and several other back-up people including the secretaries be taught how to administer cornstarch, test for blood sugar and how/ when to administer glucose.

For the first time in months I was able to drive by the elementary school and feel calm instead of nausea. How grateful we are. Thanks to Doctor Weinstein, I am no longer the “psycho mom whose kid can’t have ANY sugar is being treated with a home remedy of cornstarch of all things!”

]]> http://www.starchwars.com/2007/06/the-school-is-fixed/feed/ 2 http://www.starchwars.com/2007/05/bloodless-glucometer/ http://www.starchwars.com/2007/05/bloodless-glucometer/#comments Mon, 07 May 2007 20:57:06 +0000 Jillian http://starchwars.com/control/lib/blog/2007/05/07/bloodless-glucometer/ CNN just wrote an article on a new device that can test blood sugar without pricking the finger! Apparently the device penetrates the skin with near-infared rays eliminating the need for an actual drop of blood. Of the five clinical studies already performed, the new device has tested 85% accurate, whereas a glucometer has an accuracy rate of 80-85%. Here’s the best part, should be available within the next year! They also hope to use this same technology to develop a device to test lactates, cholesterol, etc. What wonderful news! Visit http://www.cnn.com/2007/HEALTH/conditions/05/07/diabetes.sugar.reut/index.html for the full article.