A New Adventure

Published on 18 May 2021 at 22:35

Although the blog has been quiet lately, a lot has happened "behind the scenes". Nothing serious luckily. On the contrary. Lately, things have been going quite well for Nienke. As every year, she is stable now springtime is here. Of course she continues to need a lot of care, but the symptoms are most severe for her in the colder months. The last time Nienke was admitted with a terrible crisis was at the end of December. This crisis hit me very hard emotionally. I now know that it is impossible for me to see anything like that coming. That makes every day stressfull.

In Nienke's case, from a medical point of view, we had reached the end of all possibilities to monitor her in order to prevent a crisis. I then started looking for the possibilities of a medical detection assistance dog. This type of dog is not to be confused with an Assistance Dog that is trained to help with daily activities such as opening doors, dressing, reporting things, etc. .. Medical Detection Assistance dogs are mainly used for people with diabetes and epilepsy. These dogs can also offer a lot of support with PTSD and Autism. Nienke does not fall under one of these categories, but does fall under a small category of patients who have Addison's disease. Although Nienke does not have this diagnosis, many symptoms of Addison's disease are within her own diagnosis. Along with a number of other conditions, all together called ROHHAD-NET.

When someone has Addison's disease or a shortage of stress hormone in the body, it is supplemented with medication. Often patients are given a higher dose of medication than necessary because a deficiency can have serious consequences. Too much stress hormone also has serious consequences, especially in the long run. This is why it is crucial that people with a stress hormone deficiency do not receive too much but certainly not too little medication. This is where the dog comes into the picture. A dog can smell a stress hormone deficiency. He will give a signal so that medication will only be given when necessary and thus too much can be prevented, but perhaps even more important is that a dog can smell a deficiency and help prevent a crisis.

When I had read all this last January, I got pretty excited. I discussed it with her doctors and although they had no experience with dogs they said, "Go for it!" I submitted the application in mid-January. And then the waiting began. After a few phone calls I had lost hope a bit. There were so many questions from the trainer. Nienke's condition is very complex ... I was asked if they could contact her main practitioner. Nienke's doctor found this no problem and explained ROHHAD by telephone. After this clarifying conversation, the Kibo foundation contacted me again and told me that we had gotten through the first round. This was 3 weeks ago. And today was the day ... we went for our official intake at the KIBO foundation in Nijkerk. The only foundation in the Netherlands that trains dogs for medical detection. There we heard that 700 applications are received annually and that we are one of the 17 who can officially continue with the training. What a gift! We could hardly believe it.

As of today we will start a new adventure as a family ....

First, we have to find a match between Nienke and a dog. We have no requirements besides the fact that it has to be a fun animal for Nienke to have around her all day long.

Nienke goes to special education and it is very important that the dog also goes to school. A medical detection dog works best when deployed 24/7. Praying school will approve of her taking the dog along.

The training itself will be very intense. Although we are well guided by the foundation, the dog will have to be trained several times a day to ensure that the dog becomes as reliable as possible. Quite a challenge, but one that I would like to take on as a mother!


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