And we became 3 years old!

We may not speak, we may not walk, but we understand everything. Or almost everything.
 
Our movement has not improved much, she doesn't find the motivation to get up and stand on her feet and that is what worries us. What you consider normal and instinctive for children does not apply to us. And we know it. The little one needs to learn to have the motivation to get up, learn to imitate, and even learn to swallow. We have a stander at home to put her standing as much as possible and we go twice a week for physical therapy.
 
Six months ago we had trouble even with how to swallow milk. The mouth muscles were not trained and essentially she could not make the movement to swallow and the milk spilled out of her mouth. Whole bibs and towels would get soaked. At the same time she had excessive drooling. We thought it was because she was teething or because of the Depakine. These two symptoms led us to speech therapy. And along with speech therapy, the whole package came.
 
Over the last 3 months, we started speech therapy, occupational therapy, and music therapy lessons. And they are helping her a lot. With speech therapy, she no longer drools, she more easily and immediately makes movements to chew the food we put in her mouth, she swallows better, and the mouth muscles have started to become active. She still does not eat solid food, but rather mashed with a fork, and she also has not learned to take the spoon by herself and eat.
Now we are monitored by physical therapists, a speech therapist, and an occupational therapist. They believe that through repetition and essentially through habit, he will be able to master things.
 
A week ago we completely stopped Sabril.We cut it off abruptly, we didn't taper it down, but at the same time we also abruptly increased the dose of it Depakine. So in one day, from making 200ml Depakine and 250mg Sabril, started taking 350ml Depakine. Relief and anxiety at the same time. Anxiety that she might start having seizures again. What if the seizures were more intense now? Thank God, though, 10 days have passed and we haven't seen anything unusual. On the contrary, the little one is livelier and happier with more clarity. Maybe the medications were also increasing her established sluggishness, maybe they are a necessary evil to control the seizures.
 
I am sure, however, that she understands everything. From me and from her parents. But I don't know if she can understand people who are not from her familiar environment. Or rather, she can, but she definitely needs her time to get to know you, just as she needs her time to process something that someone else perceives at first glance. But hey, who said that's a problem?;
 
This section describes the personal experience of a family. It is not a description of the course of all individuals with Kleefstra syndrome, nor is it medical advice.
Our History