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

I’m still amazed at all the extras we need to bring, such as a feeding pump for each kid in case they get carsick, plus bags for the pumps, and extra formula for the bags for the pumps and tubes for the bags for the pumps… etc. Extra g-buttons in case one falls out, extra “good for you food” so our gracious relatives don’t need to worry about it- even though they did. Not to mention the extra pre-measured cornstarch in case we have car trouble, there is a wild fire on the 215, or Transformers take over the Utah/ Idaho state border. Each trip is different, but the spreadsheet helps ensure that I forget fewer essentials (like the infamous can opener) each time. Maybe in the next 10 years I’ll have perfected the list enough to remember everything. Hey, a girl can dream.

One of the best things- we weren’t as limited on was space. We were able to pack activities in one backpack, diaper supplies in another, and medical supplies in another. This kept things much more accessible, and since we weren’t lugging it through the Atlanta airport, the limited number of bags (and children) we could strap to various appendages wasn’t a factor. My favorite “extra bag” came in the form of a morning and an afternoon cornstarch/ medical bag. We packed the first bag with enough formula, starch, syringes and gloves to get us through the first half of our travel day, then another bag to make it the rest of the day. It was great to swap the cornstarch coated syringes etc. for a brand new non-sticky bag when we reached our first destination. The Hogle Zoo.

The boys LOVED the zoo. The last time we’d been there, we were in the process of a GSD diagnosis. The boys were content to lay in the stroller and look at the animals. This was very different. They were running and playing as energetically and enthusiastically as all of the other kids. Other than stopping more frequently for snacks and cornstarch, we felt like any other family there.

After all that excitement, we landed at Ben’s Grandpa’s house where we ate a very nice GSD friendly meal, and the boys had a hay day playing with Grandpa and all of his new-to-them toys. One of their favorite parts of the entire trip was “camping” out in Grandpa’s family room and watching the stars (AKA glitter) on the ceiling. We brought playpens for Jonny and Dallin to sleep in. A necessity, since we can’t trust Jonny farther than we can grab him- let alone when we’re asleep, and Dallin is still on a feeding pump at night.

We forgot alarm clocks- one more thing to add to the spreadsheet, but we borrowed one, and used our cell phones (placed out of arm’s reach) as back up alarms. It meant that we couldn’t allow ourselves to sleep as deeply for fear of missing an alarm, but the boys slept like champs, even sleeping in a little extra so we could catch up on a little more than usual sleep.

The next morning we had a wonderful breakfast, thank you Marcia, followed by a nice time just visiting with relatives. The GSD conference was held at the Make-a-Wish Foundation at noon (only a mile or so from Grandpa’s house), and that is where I’ll end my narrative for today. We have so much to share, and videos to post, that it wouldn’t do it justice to begin tonight.

Even now, they still have so many misconceptions that I’m completely unaware of. Our 5 year old Mark for instance thought that he would be able to eat “bad for you food” when he grew up. He didn’t take it very well when we explained that, barring a cure, he would always have GSD. That sparked a huge melt down which took a good 30 minutes to dispel. It turned out that eating fruit and sugar wasn’t even the real problem at all.

I hope and pray that this trip will help the boys understand that they are not alone, but that there are others forced by their parents, to partake of cornstarch. Many thanks to all those who have spent so much time (and money) in pulling this off.

Is anyone up for a “cornstarch chugging contest” that I can record and post on GSDlife or Starchwars?

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.

We’d love to have your feedback to know if this could be a viable community for GSD.

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.

Some are so cute, some are so ugly they’re cute, but either way, we love malteagles. These photos were taken of the puppies bred specifically for helping to find a cure for Glycogen Storage Disease. Dot (mom) was a carrier, given to Dr. Weinstein by Duke University. Last December she had darling little puppies- one of whom has Glycogen Storage Disease. To tell the GSD pup apart they painted her toenails red, hence her name, Lil Red. We were able to snag a few pictures of the puppies last May when we took our boys to visit Dr. Weinstein at the University of Florida. They are housed in a small room in the Veterinarian School and have 24 hour care. Lil Red’s blood sugar is tested frequently, just like our boys, and she is given her cornstarch through a tube, just like our GSD boys. Unlike our boys, however, they couldn’t place it in her stomach because she would scratch at it. You know you want to see where they did place it. Click here to see more GSD malteagle pictures.

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://starchwars.com/2007/06/the-school-is-fixed/feed/ 1 http://starchwars.com/2007/06/sanctuary-in-florida/ http://starchwars.com/2007/06/sanctuary-in-florida/#comments Sun, 03 Jun 2007 13:55:07 +0000 BMW http://starchwars.com/control/lib/blog/2007/06/03/sanctuary-in-florida/ Though the trip to Florida is challenging with four children under the age of 6, we come home recharged and more prepared to continue the non-stop battle of Glycogen Storage Disease. As my wife has mentioned in the previous post, we have learned and gained experience that helps us travel the country with our little ones while keeping them safe and us sane. What I want to write about though is the experience at the hospital and what we were able to come back with.

First of all the hospital stay was great. It’s a night and day experience staying at Shands Hospital in the CRC (Clinical Research Center) and any other hospital we’ve stayed in for GSD care. Instead of being on pins and needles the entire time wondering if the current nurse understands what is going on we felt that we could relax a little and not have to feel like we needed to continuously watch the nursing staff to remind them how critical a schedule they were on. There was no having to wait while everyone scrambles (or in some cases doesn’t scramble) to find some formula or cornstarch (normally we would bring our own from home) and try to track someone down to take sugar levels that are 15 minutes past due. It was actually somewhat of a relieving feeling being at Shands and our entire family was much less stressed. In fact, I was even able to enjoy playing Foosball and Video games with the kids in the play area.

The best part of course of the hospital experience was the amount of time that we were able to converse with Dr. Weinstein. He was there often to talk with us and to spend time with our children. We were constantly soaking up more information on Glycogen Storage Disease and it was great to have answers to our questions. He addressed every concerned that we had and presented great insight, and modifications to the kids changing metabolic needs. He even smoothed things over with the school which was a tremendous blessing (I believe that my wife will be writing more on the school).

We were ecstatic to learn how well our children have been doing. All of the children’s test results came back as a normal child’s would. Their livers are looking great and our oldest two have recovered tremendously over this last year. Our first having had the most damage to overcome because of the length of time that it took to diagnose him (He was 3 and a half) did not have the incredible growth that our second but had recovered from weakened bones, an extremely inflamed liver, elevated cholesterol and triglycerides and chronic fatigue. He also made an incredible recovery in mental awareness and though we feel that permanent brain damage may be there he is working hard and making good progress in that area as well.

Our second also recovered from the same things that his older brother did, but not having the severity of damage he was able to also grow at an incredible rate this past year, and even though he is one and a half years younger then his brother, they are often mistaken as twins. This is exciting for us, since with the treatment that we had between diagnosis and finding Dr. Weinstein he had plateaued in growth.

The third in line just made it through the first year and a half of Glycogen Storage Disease survival and we were finally able to teach him the ways of the starch. Since cornstarch can’t be used in the first 9 – 18 months (of course he was closer to 18), that stage is particularly difficult to keep the kid stable. So it’s a huge relief to add one more kid to the 24 hour starch regimen.

Of course the youngest is still awaiting his turn to join his brothers in the starch clan, but he is doing well and we just need to keep him that way for another six months to a year. Hopefully he’ll cooperate and it will be closer to six months.

Since we were looking at puppy options for our GSD dog project, we were able to take the kids to see Little Red and the other GSD dogs. The kids loved it and though we may not adopt one of the non-carrying pups from that litter the kids were more excited about our pursuit of bringing a dog into the home.

Unfortunately our plane and hospital schedule did not afford for us to take the kids anywhere fun, but hopefully we can slot that in next year. For now… we need to tough it out another year and hope for the best.

May the starch be with you.