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Q&A About Weaver Syndrome

In this section, you'll find some questions about me asked by people mostly the families of Weaver Syndromials.

In 2006;

  1. Height. I have now stopped growing.
  2. Teeth. Has she had any dental problems? (My daughter has had four teeth out already - her tooth enamel is very weak)

    Yes, it is the same as mine.

  3. Behaviour. Was she difficult as a child? Did she have tendency to aggressive tantrums? If so, did this improve with time? (My daughter is very loving and caring but also unpredictable and she can be very violent at times)

    When I was a child like your daughter, my behaviors were normal, perhaps calmer than an average child. Now, I'm a little aggressive by the effect of puberty and my understanding of my own condition.

  4. Mental abilities. It seems that Rumeysa's mental ability is now more or less normal - that is good to hear. Was she slower to speak than other children?

    Yes, my speech and perception were delayed in the beginning, but the development was fast, so my mental abilities are normal, probably above average than a normal child now. The important thing is that I had intensive care at that age.
In 2005;
  1. How tall was Rumeysa when she was 4 1/2 years old? At what age did most of her growth take place?

    I was 4'9" (145 cm) when I was 4. I continuously kept growing until last year up to 5'8" (172 cm). There is no specific time interval for my excessive growth, growth rate was almost same during that period.

  2. Have you noticed whether Rumeysa has a lack of muscle tone or mass? It seems that when I touch my grandson's skin that I am touching bones and that there is not really any muscle tone.

    Yes, I have a lack of muscle tone and my muscles are weak, especially legs.

  3. What are some of the long term effects of people with Weaver Syndrome?

    In the Weaver Syndrome since the growth is rapid and muscle development is not accommodated with the growth, standing and walking becomes difficult in long terms. Furthermore, there may be problems with blood circulation.

  4. What is the likely outcome of a course of physical therapy or your experiences with physical therapy?

    Physical therapy improves the development of muscles with 100%. When I gave a break with physical therapy, the muscles got loosen a lot. At the age of 5, I stayed in a hospital and I was able to walk after a 5 months full-day physical therapy given in the hospital. Before that, home Physical Therapy was suggested, but it did not help much. At the age of 6, I was able to walk with crutches after a 4 months full-day therapy in the hospital. At that time, the experimental cures such as increasing the hormones (to shorten the time for puberty) disrupted the synchronization between the muscle and growth rate again. Currently, I have been given physical therapy at home by a physiotherapist. I can endure short walks with a walker. In short, a person with Weaver Syndrome has to have long-term intensive physical therapy. Now, I'm 9 years old and 2.03 m tall.

  5. What is the most effective management for this syndrome, such as, are there programs that address kids who are suffering from this syndrome or adult who have this syndrome and living independently?

    We haven't heard anything about it yet, please inform us when you have that kind of information.

  6. What are some of the home care regimen should be recommended, especially for increasing the development of someone with Weaver syndrome?

    The things should be done at home: The parents should be informed about nourishing the kid with Weaver Syndrome. Especially immediately after birth, lack of vitamin D, hipocalcemia, anemia has to be supported by medicines. Physical therapy always has to be. Another thing is, the people with Weaver syndrome have difficulties to communicate with their environment; they have to be trained on it.
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