June 2008 - Prader-Willi Syndrome Association (South Africa)

More documents

Recommendations

Info

Navrae wat aan die Vereniging gerig word neem toe – so was daar „n navraag oor koorskonvulsies. Lees gerus dr. Engela Honey se antwoord hierop. Lede moet onthou dat dr. Honey altyd vir navrae of „n konsultasie beskikbaar is. Groot was die verrassing toe die eerste kennisgewing van die 7de Internasionale Prader- Willi-Sindroom Konferensie wat in 2010 in Taiwan gehou gaan word, in die pos is. Hierdie Vereniging wat in 2005 gestig is laat nie op hulle wag nie! Dit is „n vriendelike kennisgewing wat almal uitnooi om hierdie konferensie in Taipei by te woon. Ek is dankbaar om verslag te doen dat dit beter gaan as wat daar verwag is, met Pam Eisen, die President van IPWSO. Sy kry nog chemoterapie en was so tussen alles deur instaat om te reis en by haar kinders te gaan kuier. „n Skoolvakansie is om die draai – die Bassons se PRET-bladsye is weer eens daar! Verder is daar idees vanaf Weigh-Less vir „n heerlike tunabroodjie, sop en fransebraaibrood vir ontbyt – dit maak mens beslis lus om dit uit te probeer! Verskeie brokkies inligting word geplaas. Neem ook kennis van die Algemene Jaarvergadering wat vir 24 Augustus 2008 beplan word. Dankie aan al die mede-werkers! Wintergroete Rika du Plooy. Permission is granted to reprint the article on Skin Picking and the Prader-Willi Syndrome and Precautions Adviced When Starting Growth Hormone With PWS. The two articles are from The Gathered View March-April 2008 edition, newsletter of Prader-Willi Syndrome Association (USA) 8588 Potter Park Drive, Suite 500 Sarasota, FLORIDA 34238 - USA www.pwsausa.org People With Strength Volume 11 Issue 2 Page 4
MEET THE SENNE FAMILY Written by Welhemina Senne, mother of Metsiatsile, Boitshoko and Amogetlang We are a family of five and we are Tswana speaking. Metsiatsile is our first child and is born on 12 September 1998 at the Jubilee Hospital in Hammanskraal, north of Pretoria. It was a normal birth and Metsiatsile weighed 3.5 kg. I realised there was a major problem – my baby was not crying, looked floppy and was only sleeping. I was worried and the doctors decided to run some tests. My baby could not suck and therefore I was not able to breast feed her. It was so painful to see my baby suffer. The doctors at Jubilee Hospital kept us at the hospital and the baby was put on tube feeding. The doctors couldn‟t understand what was wrong and after a week at Jubilee Hospital we were transferred to Kalafong Hospital in Attridgeville, Pretoria. We were admitted for one month while doctors were trying to find out what was wrong. After that we went for monthly check ups, and during that time some tests were done by Dr Engela Honey and the results showed that Metsiatsile had the disease called Glutaric aciduria type ll which falls under genetic disorders. The painful thing about that disease was that they don‟t know what caused it, and they predicted that my child would not be able to talk or walk. Metsiatsile was put on a medication called L-carnatine and a multivitamin syrup, which she used for four years. At the same time there were two other children in the Pretoria Academic Hospital with the same problem of which Dr Honey was aware off. I often asked about the progress of those children and then Dr Metsiatsile and her brother, Boitshoko at the AGM 2006 Honey told me that there was no progress compared to Metsiatsile – by that time Metsiatsile was already walking (at one year and eight months). Metsiatsile received occupational therapy and we are still visiting the speech therapist. So I told Dr Honey to run some tests to check again – maybe the first diagnoses was wrong. Urine tests were done which showed nothing. Eventually People With Strength Volume 11 Issue 2 Page 5 Metsiatsile Senne will be 10 years September 2008
Page 1 and 2: Volume 11 Issue 2 June 2008 Prader-
Page 3: Beste Lesers Te midde van stygende
Page 7 and 8: Medical View Skin Picking and Prade
Page 9 and 10: Wound Healing With PWS How Many Cal
Page 11 and 12: handles, locking the chain through
Page 13 and 14: Who else in the extended family and
Page 15 and 16: PROBLEM CORNER Q: What are febrile
Page 17 and 18: New Publications Red Yellow Green S
Page 19 and 20: Thanks to Paulette and Johan for th
Page 21 and 22: People With Strength Volume 11 Issu
Page 23: Which sports are shown? Use the pic

June 2008 - Prader-Willi Syndrome Association (South Africa)

You also want an ePaper? Increase the reach of your titles

Delete template?

Save as template?