Special Connections is a safe place where families and caregivers of patients at Cincinnati Children's Hospital Medical Center connect with others facing similar challenges for support and information sharing. More about this group
Five million
- By Brian · New reply May 18, 2013
- Journal · 205 replies
- Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...
Rhombencephalosynapsis, anyone??
- By ashleekuhl · Posted May 14, 2013
- Discussion in Diagnosis-specific information · 0 replies
- Hi everyone. My daughter Parker was born December 4th, 2012 with a rare brain malformation called Rhombencephalosynapsis, or RS for short. Her RS also caused her to have hydrocephalus. She was placed ...
Katelyn's Story
- By kelkitson · New reply May 14, 2013
- Journal · 3 replies
- Katelyn was diagnosed at 24 weeks in utero with severe hydrocephalus. At 28 weeks, my husband and I were told her prognosis was grim due to the severe pressure in Katelyn's head based off of MRI, Ultrasound ...
A new Inspire report in collaboration with Stanford Medical School
- By Brian · New reply May 5, 2013
- Journal · 84 replies
- As many of you know, Inspire has a professional collaboration with the Stanford University School of Medicine. Inspire members have written personal stories for the Stanford Scope column. I am pleased ...
The Inspire Q&A: Inspire talks with Deanna Attai, MD
- By John2 · New reply April 16, 2013
- Journal · 16 replies
- Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients and caregivers worldwide. The people in this ...
Looking for support group
- By Jamemo · Posted April 9, 2013
- Discussion in Family issues / support · 0 replies
- My son is 11 and has a long list of diagnoses (aspergers, anxiety, ADHD, rule out Bipolar D/o) . I am looking for a support group for parents of children with mental illness. I see on NAMI website support ...
Looking for pediatrician
- By Bubba2003 · New reply April 9, 2013
- Discussion in Diagnosis-specific information · 5 replies
- We have a son diagnosed with CHARGE syndrome who is 9 yrs old. It has been difficult for us to find a pediatrician in the Greater Cincinnati area who can effectively handle the needs of our son. Anyone ...
Help. I need some direction. I'm out of answers and urgently need help.
- By mjsg · New reply April 4, 2013
- Discussion in Mental health and behavior · 8 replies
- I feel like my 12 year old son is being over-medicated and what's worse is nothing is working. Michael is a sweet, empathic and thoughtful boy. His ADHD has always created a false IQ test. His aggressive ...
FTT, developmental delays and hypertonia
- By aewood02 · Posted April 3, 2013
- Discussion in Diagnosis-specific information · 0 replies
- my son has failure to thrive. he sees a physical therapist because he is behind in milestones. he was just diagnosed with congential hypertonia. i know its good and therapy should help but are there any ...
Acupuncture for spinal cord injury
- By Beth_Bingman · Posted April 1, 2013
- Discussion in Therapy · 0 replies
- A suggestion was made recently that I should look into Acupuncture as another method in treating my son's spinal cord injury. Have any of you had success with this? Do you have any suggestions in finding ...
Equipment Wanted List - Can you help?
- By GusMom · New reply March 28, 2013
- Discussion in Equipment and transportation · 4 replies
- We are very interested in a bath chair, a KidWalk gait trainer (size I), a pediatric wheelchair or stroller that would accommodate our large 2 year old, and a train table. Okay, I threw in the train table ...
My son, Samuel
- By epilepsymom · New reply March 9, 2013
- Journal · 12 replies
- I am the parent of Samuel, a 9 year old boy with a very complex medical history. Sam has a multitude of issues but his most serious issues are eosinophilic gastroenteritis and epilepsy. Sam can have up ...
EGID teens
- By rcdonohoe13 · Posted March 2, 2013
- Discussion in Family issues / support · 0 replies
- Hi! I'm Rylee! I'm thirteen, and I am managed at Cincinnati Childrens Hospital! I have Eosinophilic Collitus and Eosinophilic Gastroenteritis (I hope I spelled those right!) and my doctor is Dr. Phillip ...
ABM offered in Cincinnati for kids with special needs
Cdiff Issues
- By Carrie03 · New reply February 20, 2013
- Discussion in Diagnosis-specific information · 3 replies
- I have a 6 yr old son s/p severe TBI. He is wheelchair, G-tube dependent. 5 months after we left the hospital from his injury tx/rehab he tested positive for cdiff after being re admitted for impaction ...
Kayla’s Crew Balloonapalooza” on March 30, 2012
- By SpecialMama · Posted February 17, 2013
- Journal · 0 replies
- I wanted to share our event with everyone to give you an opportunity grant wishes to children with life-threatening medical conditions as we raise money for Make-A-Wish Ohio, Kentucky and Indiana at our ...
The Inspire Q&A: Inspire talks with Lindsey Miller
- By John2 · New reply February 6, 2013
- Journal · 13 replies
- We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients and caregivers worldwide. The people featured in our Q&A series ...
Sooo Hungry......Dunno what to do
- By ChristanQ · New reply February 5, 2013
- Journal · 6 replies
- So I don't usually post my own stuff. I have a hundred posts I've composed in my head but haven't typed out yet--mostly due to distractions & just not strong enough to write my own stuff. But I'm posting ...
We're hiring!
- By Walter · Posted January 22, 2013
- Journal · 0 replies
- Hello everyone, We have a position open with our engineering team at Inspire, and I'd like to share the job description with you in the event you know just the person we're looking for. We found our most ...
Dyskeratosis Congenita
- By Millermm · New reply January 17, 2013
- Discussion in Diagnosis-specific information · 2 replies
- Our 16 month old son passed away a year ago from complications of a bone marrow transplant for a unique form of dyskeratosis congenita with severe enteropathy. He spent his entire life in the hospital ...
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The Cincinnati Children's Special Connections Community connects families and caregivers of children with special health care needs for support and information sharing. This community is sponsored by Cincinnati Children's Hospital Medical Center, an Inspire trusted partner.
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