Our life with a rare genetic disease

As I mentioned earlier, T has had always difficulties with bowel movements, but from summer 2020 it just got very bad. It got that bad that we had to use often, like every 3rd day, Microlax enema for few months, as nothing seemed to help. No "natural laxatives" helped at that moment in such way that no enema would be needed. In late autumn we started to use more or less regularly Pegorion (i.e. safe non-fiber over-the-counter constipation medicine in form of powder). It took literally weeks that it finally started have an effect. Till Xmas time or so, when we got back again, where we were in the autumn. For who knows the reason. Microlax had to be used every third day again. It happened despite of Pegorion use and good diet incl. vegetables, fruits, fiber (was checked also by our dietitian), moving outside, exercising etc. Well, you can always increase the amount of liquid, can you? We all know that it is not always that easy. As it takes daily so much energy to think about &

We have been from summer 2019 without a diaper during days, using diaper only during nights and during afternoon naps, just a friendly reminder, we are almost 5 yrs old. These days we are practicing pretty successfully the use of "big toilet". To make it more easy and less scary, I made for her potty training "step stool". With transition they started also in a daycare. So far, so good.

Disclaimer: this is not a medical advice. We do not take any responsibility for any unsuccessful or successful attempts to try this protocol. As well as we do not take any responsibility for any effects of three main parts of this protocol (inulin, fish oil, olive oil) on anybody’s health. Medical Disclaimer: The advice found here is NOT intended to replace the advice of a qualified medical practitioner. Our start I heard for the first time about the Nemechek protocol in autumn 2019.  Later on I joined the Facebook group and started to read and learn about the protocol from other people already using it. I have to say, I was really amazed, it was often breath taking reading. Did not really know, if I should even believe those major changes in lives of so many families. And I have to say, I was obviously not patient enough to start. Did not take too long, and we started with it. First “mistake” was that we started with flax seed oil, as I was told it contains a lot of Omega 3 al

Our new "toy" was born :-). Just few days ago I made to T one scooter board for: making her arms and core stronger providing vestibular, sensory and visual input improving bilateral coordination motor planning

Few days ago I built an indoor "playground" for T. From that time she climbs up the stairs and slides down the slide whenever she has a possibility. Helps her muscles, coordination, balance....esp these days, as the weather outside is not really friendly. Moreover it is very space saving, as it includes the loft bed also. T wished to sleep "up" for some time already, as she is 4 yrs old, I was a bit suspicious, but seems the whole complex works just perfect! Attaching some blackboard for drawing/writing is in mind ...

Besides “regular” physiotherapy, we took few intensive weeks of Vojta therapy twice a year for more than two years. Can only recommend. At least as a supplementary, if not as the main therapy. Very useful! Especial for very small children with central motor disorders. The earlier you start, the better consequences on the development it has.  It helped us very much. ALWAYS,  after such intensive time "with Vojta", we made a huge step forward in the development. And it was seen in very short time after. This method, however, requires from the parent/caregiver a lot of time. That the whole method makes sense, it needs to be done few times per DAY, 3-4 times. Each sessions takes only about 20 min. You must also believe in it, it helps motivating. Only by persistence and repetition you will be successful! More information can be found here: https://www.vojta.com/en/the-vojta-principle/vojta-therapy/fundamentals .