The Atypical HUS Foundation

September 2012 Blog Posts (5)

Busy Busy Busy!

Wow - so sorry! Just realized how long it's been since I posted an update! Whew - where do I start?

The kids started school back in early August and Hyde is not the biggest fan :-(. Cried alot the first couple of weeks - he's better now but still wakes up every morning telling me he's not going to school today. Oh well. Both of the kids seem to like their teachers and we are settling in at a brand new school so some hiccups there but overall doing well. I have…

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Added by Phyllis Ann Talbot on September 20, 2012 at 9:56am — 2 Comments

Another Longest Day

Well today we went in for the neuropshyc testing to try and gain insight into why Nathan has no trouble understaning and remembering but can't relay the information well and how this knowledge might help us help him.

I had already filled out the standard forms and had the schol fax their counterparts, brought samples of school work, the I.E.P. and Nathan.  The doctor was very interested and I know she'll do her best compiling her observations, Nathan's work and…

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Added by Cheryl Biermann on September 19, 2012 at 8:53am — No Comments

Accumulative aHUS results

Well, it's been a while since we updated.  All is great.  we will be starting neuro pshyc. exam and testing in Sept. As a "minor" result of this disease, which isn't included in any relapse info. on the disease, but is definitely a result of on going damage directly caused by aHUS, Nathan has pretty severe fine motor skill, balance and some gross motor impairment.  As a result of exercise, the gross motor issues are improving.  Nathan has had school led OT since kindergarten and his…

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Added by Cheryl Biermann on September 5, 2012 at 5:29pm — 6 Comments

More Access to Medical Publications via "patientINFORM.org"

Find a medical article or research in abstract format, but want to access the full publication? TRY patientINFORM: 

"patientINFORM is a program that brings together the publishers of the world’s leading medical journals and the world's most trusted health organizations to provide patients and their caregivers with access to some of the most up-to-date, reliable and important research available about…

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Added by Linda Burke on September 5, 2012 at 11:44am — No Comments

help... does anyone have the same symptoms

Hi all, i havent been around  much this year on this site as life has just been crazy busy since the birth of my 5th baby in January!!!

I have been rather concern about Ash lately... he is constantly cold... with or without a fever, he is always getting blankets and shivering even when everyone else is warm... he is also always complaining that he is tired... "mum im just so tired" he will always say to me!!!

I was just wondering if anyone else has had symptoms like…

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Added by Kerri Grey on September 1, 2012 at 8:54am — 4 Comments

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