Phifer syndrome
Presentation
The head will lead to not growing probably for example my head was a clover leaf head , and you will have some hearing loss and well the reason why I got the trachea was there was not enough airway space will leads to the G-tube. G-tube helps out with bringing the food down and also giving me more fluids connected to a big pack of something. Also kids with phiefer syndrome have a shunt. Know as you get older there will be a piece of fluid in there probably the size of rice at the begin , but there are some complications there are two tinkling in the body , or you feel like your going to fall down to make it easier maybe feel light headed.If it were to get bigger it would be the size of a hot dog which will lead to another major operations when it first started they said sometime in the year 2015 you will get another MRI to see if it is still the same or got bigger,
Phiefer syndrome is involed with three subtypes
People with phiefer syndrome have normal intelligence and a normal life span.
Apert syndrome
Having Apert syndrome is much harder and much more painful. Apert syndrome is where you have your thumbs and your toes together and then you have to wear these big gignatic casts to get your fingers or toes separated you feel a little pain.
One sytem
Ear infections
Exams and tests
Doctors perform physical exam of the Hand and skull x-rays
Here is something important your child must have at appotiments is hearing tests.
Ok everyone I hope you like this post and if you have any qusetion about these two things or ask if there are any other syndromes I will add more by the way if you are wondering where. I got this information from it was the internet.
From Ava
Very interesting. Maybe you could be a doctor like Cliff Huxtable one day and wear colorful sweaters like he did.
ReplyDeleteGood information, you did your research. You would be a good person to talk to for kids growing up with Pfeiffer syndrome, They will feel more hopeful when they see how well you turned out. So proud of you.
ReplyDeleteYou are a smart girl and maybe someday you cna give your speech onThe Ellen Show!I didn't stop there.
ReplyDeleteDear Ava - cousin Christian here (CC for short). This blog is a very good summary of Phifer syndrome. I learned a lot! I think grandpa's idea of talking (or writing / blogging!) to other kids with Phifer syndrome is a great one. Your positive attitude and friendly nature are perfectly suited to helping and teaching others. It seems like every time I comment on your blog I'm suggesting another profession you can consider when you grow up! You have a bright future ahead of you, kiddo! Keep on writin' and keep on rockin'!
ReplyDelete