*** Breaking News *** The PHF and its Founder's Michael & Kimberly Illions, have been nominated and selected as one of the Finalists to receive a RareVoice Award in the Patient Advocate category at this year's RareVoice Awards Gala, being held on Thursday, October 10th at the Arena Stage in Washington DC. "This is a great honor and the timing couldn't be better as National Hydrocephalus Awareness Month begins on September 1st, and we just came back from our Hydrocephalus Awareness Day on Capitol Hill with over 125 people from 20 States", stated Michael Illions, the Vice President & Director of Advocacy for the PHF. Everyone at the PHF congratulates the other nominees from the National MPS Society, Parent Project Muscular Dystrophy, Acid Maltase Deficiency Association, Jett Foundation, University of North Carolina Chapel Hill & Jonah's Just Begun. The Second Annual Rare Voice Awards Gala is a celebration to honor advocates who gave rare disease pa...
Posts
Shunts
http://pediatricdevicesatlanta.org/self-monitoring-shunt-hydrocephalus This shunt sounds exciting (with caution). Here is a problem........ It makes me mad.... The last new shunt by codman was released to The American market in late 2012. It took Codman 8 years to receive FDA approval. 8 years!!! Meanwhile it was being used in Europe. The 510 K process is what the FDA calls the new small medical device approval process
Less than 24 hours
Excited to meet dozens of parents of hydrocephalus children and people with hydrocephalus in less than 24 hours. Not excited that this is a life threatening condition with no cure.
Physiatrist appointment
It went well with the exception that they are leaning toward use of Botox injections. We're not apt to follow the suggestion as of yet. Researching is required and prayer. Another con of Botox is it does not last long (maybe 9 months depending on patient and does not always work, sometimes it works great) and the needle/injection is administered while the child is awake with NO sedation or pain killer. The injection is placed via the needle into the muscle(s). Not sure how many injection required for Hawke if treated. Stories of parents stopping half way into the procedure due to the pain inflicted on the patient. Yes there are some stories with good results as well.
PT
Working hard to walk on his own with a 4lb ball. The Therapist holds on to his waist. He enjoys PT even while working hard, Praise God.
Advocate
When times are good H parents still brainstorm possible hydrocephalus scenarios and what-ifs. Some go for 8 years with good quality of life, than have a shunt failure and are not the same for years, months. This condition is unpredictable, unexplainable. Some have brain surgeries yearly, some lose the fight. Reasons that drive us to advocate and travel to DC.