We’ve posted in the past that Luke has a sensitive nose, and that we’ve experienced times where he’s reacted when the kids were having low blood sugars. We’ve since been trying to work with Luke and the kids to help him train his nose. A favorite game of the kids (and the dog) is the give one of the kids a treat and have them hide. Luke is then given the task to find a specific kid. Luke has recently gotten pretty good at it and has been able to help us find mischievous toddlers that occasionally like to play hide and go seek with out letting us know first. So tonight we decided to give Luke a real challenge.

For the 4th our family went to the city park to watch fireworks and let the kids run around. We took some treats with us and then split up for a little bit making sure that Luke was distracted while the older boys went and played. The park was very crowded and there was numerous fireworks going off in the parking lot keeping Luke a little on edge. I have to admit that I was skeptical that our pooch would be up for a challenge like this let alone be willing to even respond to the command with all the extra smells and noises that were a part of the course. He responded. My wife gave Luke the command to find Mark. He immediately focused and worked his way through the crowd following the winding and confusing path that Mark, Ethan and I took to get to the other side of the park and in a short amount of time found Mark. I was amazed.

Though Luke has come along with some extra challenges, I find the benefit of having a disciplined animal with a keen senses and a real attachment to the  kids a true blessing, and I am less and less worried about him being able to help us with eventually being on alert at all times for low blood sugars.

Now if we can just get him to never have an accident in the house again… I might actually learn to love the thing.

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

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.

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.

So, it’s no wonder that I was very excited to hear from Stacy, another mom of GSD kids, in Utah the other day. Apparently Dr. Weinstein will be attending a conference in Salt Lake this fall, and she and Stephanie, mom of GSD type III kids, will be planning a mini Glycogen Storage Disease get-together and dinner while he’s in town. It’s still in the very early planning stages, but the dates will most likely be in the latter part of October in the Salt Lake City area. If anyone else would like to attend please e-mail me! We’re happy to meet all ages, all types.

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/2007/04/emergency-preparation/ http://starchwars.com/2007/04/emergency-preparation/#comments Fri, 20 Apr 2007 17:11:59 +0000 Jillian http://starchwars.com/control/lib/blog/2007/04/20/emergency-preparation/ What if there was another tragedy like 9/11? Another natural disaster like Hurricaine Katrina? How would we be able to leave without any notice? It’s important for everyone to be prepared for an emergency. It’s especially important for someone with GSD, and it’s extremely important for four boys with GSD. There are many good resources on the internet reccommending which foods and supplies anyone should have in a 72 hour kit in case of an emergency. http://www.ready.gov/america/index.html is one of my favorites. Of all the ones I’ve read, none of them mention cornstarch, g-tubes, or syringes. Go figure. So, here are my suggestions.

As anyone who has read my other pages on this blog knows I am a huge fan of simplifying. The simplest way for our family to do and store cornstarch is in Snack sized Ziploc bags and 3oz bottles of prosobee. Some people prefer cups with a sealable lid, but that’s just too bulky with multiple GSD kids. The simplest way to bag cornstarch is to buy it in bulk. Once a month I special order two 25lb. bags of Argo cornstarch from Winco Foods. Every Tuesday morning we bag cornstarch for all the boys for the week. In the van I keep a 24 hour supply. (Their doses of cornstarch vary by time of day). In the 24 hour kit I also store three 60cc syringes, one bolus feed g-tube (they share in an emergency), one can of formula and a bottle of water. Keeping it in the car has already saved us in one instance when we just couldn’t get home in time for their next starch.

In our 72 hour kit for the family we have enough food and water to last our family a bare 72 hours. (canned food, etc.). We also keep enough doses of cornstarch and canned formula to last the full 72 hours, as well as several baby bottles for our infant, diapers and wipes. In addition we keep 8 feeding bags (our two youngest are still on continuous feeds at night), 6 syringes, 2 g-tubes, 12 I.V. sponge packets (we use these around their g-buttons), 1 roll of medical tape, a portable gram scale and a checklist that includes things we can’t keep in the kit such as feeding pumps, additional baby bottles, and medical notes from their GSD specialist.

This is a lot of stuff, but it is all necessary. We should probably keep changes of clothes, but it would simply take up too much room. All of these supplies are kept in two bags in our coat closet for easy accessabilty. Some people choose to use huge Rubbermaid Storage boxes and include tents and blankets/ sleeping bags, but if it were an emergency where we had to be bussed out (like Hurricaine Katrina victims) there is limited space, so I think packing light is the best way to go.

The chances, of course, are rare that even if a person happens to be packin’ the GSD gene, that they will find that special someone to marry and they also happen to have the same genetic problem. I suppose that there is always the scenario where you’re family tree doesn’t branch and that would change the statistics around a bit, but really if that’s the case, you’ve got other issues deal with.

But let’s say you do find that one in a million like myself, there’s still only a one in four chance that your children will end up with both resessive genes needed to make up the magical formula needed for a successful GSD kid. Even with the odds bordering that of the lottery, there is a concern. Heck, we beat all of the above without even really trying, so i guess anything is possible.

There is comfort in knowing where your gene pool is tainted and what the potential is. I have to admit that a heads up that our kids were going to have GDS would have been nice. A lot of guesswork and worry could have been avoided. Anyway for those that wish to know about where to go to to find out if they are indeed on of the few chosen to carry on the legacy of Von Guerke’s here is a link to Duke University Glycogen Storage Disease Lab as well as Prevention Genetics which links are both found on The University of Florida’s Glycogen Storage Disease Program web site.

I won’t pretend to know much about the process or how it works. As I learn more I will add comments to this post. But hopefully this points those interested in the right direction and I encourage those that find out more to add their comments as well to the blog here.

Just before midnight on Saturday, my husband had to take him to the emergency room while I stayed home with the other three. I called ahead to see if they would prepare an I.V. so it would be ready for my son when they got there. The nurse I spoke with said she couldn’t do anything until they arrived, but fortunately another nurse overheard the conversation. She had been our son’s E.R. nurse a few weeks ago and understood that by the time he got there his blood sugar would probably be in the 55-65 range and dropping fast. When my husband walked through the door, he was immediately ushered back where this exceptional nurse had the D-10 I.V. ready. Sadly they had to place the I.V. in his head instead of his arm, but how grateful we are that she remembered us, and cared so much about our child’s well-being. They were later admitted to the hospital and will hopefully be released tonight or more likely tomorrow.