Testemunho de Paciente (Cri du chat)

By: Patient Innovation

Mariana has a significant cognitive delay. While she was growing, we realized that ?? one of the things associated with her disease was sleep alterations. Mariana slept few hours. One, two hours maximum. Then when she woke up, she was in a cot bed, she would eventually assume a shell position and kept banging her head against the bed. The banging, instead of having a soothing effect, worked as a stimulus.

The rest of the night neither Mariana nor us would get some sleep. The strategy we adopt was to get camping mats, and we used them to surround her bed. As Mariana did not hear or feel the same impact when she was hitting the bed, the stimulus effect disappeared, and she eventually calm down and fall asleep. The parents that were used to sleep 2, 3 hours a night for a while Mariana sleep was quieter, later on we used drugs, however while this was impossible, this was one of the strategies that we used so she would have a more undisturbed sleep.

Mariana was born with a very pronounced muscle tone. She began occupational therapy with 2 months. At a certain point, Mariana had to learn how to stand, both because of the hip and to gain some muscle tone.

We discover that Mariana was in love for her image in the mirror. When there was a mirror Mariana stayed still and focused on the image, and eventually started kissing the mirror. So in a corner of her room we made a mirror surrounded in acrylic, to protect it from breaking due to a fall or the through of a toy. We made a frame. The therapist told us that we had to discover how to make Mariana feel enthusiasm and stand. Since she didn't had much strength, we arranged a wire with several of her favorite toys above her height so she would feel excited and stand up. The question was how she would be able to push herself since she as some finger stunted, and therefore does not have the strength to get up and stand. It had to be something small, that fitted her hand, and gave her that impulse.

Testemunho de Paciente (Cri du chat)

So my husband thought of using those supports that regulate the height of the shower, we applied one on each side of the mirror, and got the handle of a broom, something thin so her little hand was able to grab the wood. It allowed us to change the height of it, it could be higher or lower, we begin with a lower height to get her excited and teach her. This was how Mariana learned to stand up. After, we learned how to teach her and since the therapist went to our home to do the therapies there was the site of treatment. It was excellent, Mariana deu um salto.??? People with Mariana's pathology usually have an adoration for hair. They pull our hair. The hair for them is exciting. Our hair is not a problem because we can protect ourselves.

But her hair is within her reach and we don't know how to decrease her excitement about it. Fortunately, some days she just doesn't pay attention to it, but there are others, in which she is more irritated, that she tends to pull and tear her own hair out. Mariana has some hairless spots in her scalp.

We found that if we applied hair gel on her hair, she retracts, because she has some sensitivity. We noticed that when we had the hair wet she didn't pull it. So we thought, keeping her hair all day wet is not possible, but we could apply hair gel. Especially in the days in which she is more agitated and has a higher tendency to tear her hair out, we apply hair gel. During that day Mariana is not focused on her hair. She doesn't feel the same excitement, because with the hair gel her hair is stiff and wet. She doesn't like that touch on her hair.

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