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Dear Dr Tabatabaii
I fully understand your wish to do everything possible for this girl.
Themainstay of medical treatment for children with CF is regular high dose
anti-pseudomonal antibiotics, usually given IV, regular chestphysiotherapy, and nutritional support with pancreatic enzymes, extra
fatsouble vitamins, and high calorie foods, sometimes also feed given
through gastrostomy. There is also benefit from anti-inflammatory therapy,
such as regular low dose corticosteroids, but this comes second to the
antibiotics,physiotherapy, and nutrition. If you send me a forwarding
address I will be
happy to post you a copy of our cystic fibrosis handbook, which is
designed for general paediatricians in the UK who care for these children.
This will have a lot of useful advice for you. Not all the treatments
listed in this book will be possible in your country, but I am sure that
many will be.
Regarding lobar transplantation, I would caution against embarking on this
operation in your country. The surgery is difficult, but even when this is
successfully completed, the post transplant care is very complex. If you
need more advice about lobar transplantation you can contact Dr Marlyn Woo
in California. Her email address is <marlyn@hsc.usc.edu>. I am sure she
will be happy to give you some advice.
Best wishes
At 04:49 AM 12/22/02 -1200, you wrote:
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Disclaimer: Great Ormond Street Hospital for Children NHS Trust
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