I wish people would think before they speak. I had a women today compare Chloe’s Syndrome to Asthma or Diabetes. This naive woman compared Chloe to taking an Amoxicillin Prophylaxis to an inhaler or insulin. Little does she know it does not prevent a child with Polysplenia from getting bacteria infections. Chloe also has Asthma and uses her inhaler twice a day. The medical community or people working with children need to understand that children with Polysplenia are septic to sepsis if antibiotics are not given to them right away. They have this mind frame that having many spleens mean that they are working at their full capacity. This is not always the case and unfortunately there is not enough research on Polysplenia to back it up. Thank God for Chloe specialist. She had a fever plan done for Chloe to help ensure that other doctors due right by her. Chloe’s Fever Plan helps guarantee that when she reaches a certain temperature & has signs of serious bacterial infection that CBC, Blood Culture, and ceftriaxone x 48 hours is done.
I was so flabbergasted by it and mad. I dislike being talked down to and yes I have a problem with this. It is my opinion; you should have all your facts together when making a strong statement to someone. I said to her that only 15 percent of people with Polysplenia will make it into adulthood. I know my daughter has a good prognosis and has a strong chance of making it beyond adulthood. However,along the way she may have obstacles to over come. This is what simple minded people forget. But, don’t belittle what she has and make light of it. I also told her that she should read up on it on the internet (medical journal sites) and contact the specialist who wrote the article on Polysplenia. In order to understand the syndrome better so the next time she speaks to a parent who has a child with Polysplenia she’ll be more sympathetic to it.
It is so important to spread awareness and it just takes 1 to spread the word. I am doing my part and I hope others will do the same.
1 comment:
Its so frustrating when people just don't get it. My daughter is always having to tell people not to just touch Mei-Ling or tell parents to not let their children play with her toys. They all seem to have the same reaction, that my daughter is just selfish or germ phobic.
I can assure you that people are pretty horrid to children with diabetes. My daughter has been since she was 7 and you cannot believe how many people would tell her as a child about how thier Uncle so and so lost his legs to diabetes or how so and so died from it. Melanie would have nightmares over such comments.
The only way to cope, is to remember that not everyone is educated in health issues and you just have to let the comments fly away as if they were a silk hankie flying away in the breeze. I used that visualization for Melanie as she was growing up regarding comments that were said in thoughtlessness or ignorance and she still uses it today for herself and for what people say about Mei-Lings heterotaxy polysplenia
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