rhombencephalosynapsis.org
Rhombencephalosynapsis WebsiteAn informational website to share information on Rhombencephalosynapsis or fused Cerebellulm and Gomez-Lopez-Hernandez syndrome.
http://www.rhombencephalosynapsis.org/
An informational website to share information on Rhombencephalosynapsis or fused Cerebellulm and Gomez-Lopez-Hernandez syndrome.
http://www.rhombencephalosynapsis.org/
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JoAnn Larsen
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JoAnn Larsen
5542 F●●●●●●od Dr.
Citru●●●●●ights , California, 95621
US
View this contact
JoAnn Larsen
5542 F●●●●●●od Dr.
Citru●●●●●ights , California, 95621
US
View this contact
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Rhombencephalosynapsis Website | rhombencephalosynapsis.org Reviews
https://rhombencephalosynapsis.org
An informational website to share information on Rhombencephalosynapsis or fused Cerebellulm and Gomez-Lopez-Hernandez syndrome.
rhombencephalosynapsis.org
Rhombencephalosynapsis Condition Information
http://www.rhombencephalosynapsis.org/condition.html
Mendonca JL, Natal MR, Viana SL, Coimbra PP, Viana MA, Matsumine M. Rhombencephalosynapsis: CT and MRI findings. Neurol India 2004;52:118-20. There have only been about 5o reported cases of Rhombencephalosynapsis since the first known one in 1914. Until the use of the MRI in 1991, only a few cases were reported. Most doctors, including specialists, have never heard of this condition.
Rhombencephalosynapsis Support
http://www.rhombencephalosynapsis.org/support.html
There are not very many helps out there for families with children that have been diagnosed with rhombencephalosynapsis. Here are a few:.
Tanner's Rhombencephalosynapsis
http://www.rhombencephalosynapsis.org/tanner.html
In December of 2008. Tyler and Tanner were born. Early on it was apparent that Tanner had some type of brain disorder. The doctors suggested Dandy Walker Syndrome or Joubert Syndrome. After birth and a MRI, he was diagnosed with a fused cerebellum. That evening his father and the doctor did research on the internet and discovered his condition was called Rhombencephalosynapsis. In the fall of 2009. In May of 2010. In June of 2010. Tanner's head seemed to fill with fluid again. He has had a total of 1...
Rhombencephalosynapsis Links
http://www.rhombencephalosynapsis.org/links.html
The following are some links to articles from the medical community from different parts of the world. A Case Report of Rhombencephalosynapsis. Cognitive outcome in children.
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rhombencephalosynapsis.blogspot.com
Life with Rhombencephalosynapsis: A Unique Guest Post
http://rhombencephalosynapsis.blogspot.com/2015/03/a-unique-guest-post.html
Friday, March 27, 2015. A Unique Guest Post. I Am hoping to incorporate a new "series" on this blog which will include blog posts from individuals living with RS. If you or someone you know would like to contribute please let me know via the contact information in the right column. The first blog post in the "Life With Rhombencephalosynapsis" Series comes from my girl, Abby. Written By Abigail Fescoe:. Posted by Kristen Fescoe, March 2015. That which does not kill us makes us stronger. Abby was born with...
rhombencephalosynapsis.blogspot.com
Life with Rhombencephalosynapsis: Alopecia?
http://rhombencephalosynapsis.blogspot.com/2013/10/alopecia.html
Sunday, October 13, 2013. One of the more odd hallmarks of Rhombencephalosynapsis is alopecia. Whether male of female, most people with RS have some degree of baldness, typically patches. I was asked by researchers conducting a study on RS to send pictures of her patches and her ears (kids with RS typically have low set forward slanted ears also) and I thought I would share. When she was first diagnosed I remember thinking "how awful. on top of everything else my kid is going to have bald patches". I mar...
rhombencephalosynapsis.blogspot.com
Life with Rhombencephalosynapsis: Slowly But Surely
http://rhombencephalosynapsis.blogspot.com/2015/07/slowly-but-surely.html
Saturday, July 25, 2015. The girls had their 8 year well check this past week. Both girls are the picture of health and both girls grew very nicely. Miss Abigail is now a whopping 42 pounds and 47 inches. That puts her in the 3rd percentile for weight and the 5th for height. It doesn't sound like much but it's on the chart! Subscribe to: Post Comments (Atom). She also has structural malformations in her. Follow us on Instagram. Our words to live by. I married my high school sweetheart and our life has be...
rhombencephalosynapsis.blogspot.com
Life with Rhombencephalosynapsis: Blueberries, check!
http://rhombencephalosynapsis.blogspot.com/2014/05/blueberries-check.html
Friday, May 16, 2014. Food challenge number two was a whopping success. On Wednesday morning we had to be at CHOP by 7:30. Thankfully Abby is so cooperative about the restrictions (only clear fluids after midnight). We were early so we got checked in second. This also meant that we got a bed next to the window! So, now she can add blueberries to her safe list. The next challenge will be in July and that one will be walnuts. Posted by Kristen Fescoe. May 16, 2014 at 1:12 PM. That girl is a rock star.
rhombencephalosynapsis.blogspot.com
Life with Rhombencephalosynapsis: Itty Bitty
http://rhombencephalosynapsis.blogspot.com/2014/10/itty-bitty.html
Friday, October 3, 2014. When Abby was born she weighed a mere four pounds and fourteen ounces. She was so small. I had never held a baby quite as small as she was. As she got older we quickly realized that she would remain small. She was never on any of the traditional growth charts. Thankfully our pediatrician was satisfied with watching her grow along her own curve. She was sent to endocrine twice "just to be sure" but everything was seemingly normal. Guess that outlines just how tiny she is. Subscrib...
rhombencephalosynapsis.blogspot.com
Life with Rhombencephalosynapsis: She's disabled?
http://rhombencephalosynapsis.blogspot.com/2014/01/shes-disabled.html
Sunday, January 12, 2014. As a parent of a child with Rhombecephalosysnapsis I find myself doing one of two things (more often that I would like to admit): 1) explaining why my child is "normal" and just like everyone else or 2) explaining why my child is disabled. On the other hand I also come across plenty of people who see her big head, tiny body, spinning around, flapping hands, etc. and look at her like she has rabies. To those people I want to scream "She's a normal little girl". Really well said K...
rhombencephalosynapsis.blogspot.com
Life with Rhombencephalosynapsis: Her List of Symptoms
http://rhombencephalosynapsis.blogspot.com/2009/06/her-list-of-symptoms.html
Thursday, June 4, 2009. Her List of Symptoms. I am sure that there are other Moms (and Dads) out there whose kid has RS. Maybe they know it and maybe they don't. I thought it would be helpful to create a list of everything that seems notable for Abs so someone searching will have a basis of comparison. Was a triplet but Baby C was lost in utero. Ventriculomegaly and Aqueductal Stenosis was found via ultrasound at 17 weeks gestation. RS was missed on first MRI (only 1.5 tesla). Feet turn slightly inward.
rhombencephalosynapsis.blogspot.com
Life with Rhombencephalosynapsis: A Unique Perspective
http://rhombencephalosynapsis.blogspot.com/2013/05/a-unique-perspective.html
Friday, May 17, 2013. Most of the members of the RS/RES group that I am a part of are parents of young children with Rhombencephalosynapsis. This is probably because we are not sure what the future holds for our children so we all are in search of answers (and camaraderie! Recently one of our group members, Nichole, an ADULT with RS shared her story with us. She was kind enough to give Heidi and I permission to post it. Without further ado:. To my RES family,. I asked the neurologist what is RES, and he ...
rhombencephalosynapsis.blogspot.com
Life with Rhombencephalosynapsis: Deep Pressure shirts
http://rhombencephalosynapsis.blogspot.com/2010/12/deep-pressure-shirts.html
Friday, December 3, 2010. With the increasing amount of anxiety that Abby is experiencing so too are those around her. She is showing the beginning signs of obsessive compulsive behavior. This occurs in some cases of RS (at least according to the literature) but we had so hoped to avoid it. We have begun the search for a good behaviorist who can help us to figure out what WE should be doing when the anxiety increases. December 3, 2010 at 11:51 AM. Is it something that I might be able to make for her/you?
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happiness is a warm gun
Upgrade to paid account! Happiness is a warm gun. A brave little soldier. Very football. much hotness. wow. Jun 10th, 2014 01:43 pm. A brave little soldier. Many moons ago (AKA: 2010, the last World Cup), my friend Rosie and I came across this picspam of hot footballers to watch out for in the 2010 World Cup. And were intrigued. Who were these amazing, athletic-looking men? Why were they all hugging each other? Should we start watching the sport? CLICK HERE FOR HOTNESS: image heavy, obviously.
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78 Grey Hair Inducing Pieces of Paper. Get out that 100% grey coverage dye, because tarot is here to stay, and so are those grey hairs it has given me! Mother of a beautiful baby boy, Gabriel, who is two and a half going on 40. I live in the middle of nowhere and have recently taken up studying tarot. Recently being of course a very lose term. have been using cards for seven years now, but never bothered to actually learn the meanings of the cards until now. View my complete profile. Sunday, April 5, 2009.
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rhombencephalosynapsis.blogspot.com
Life with Rhombencephalosynapsis
Saturday, July 25, 2015. The girls had their 8 year well check this past week. Both girls are the picture of health and both girls grew very nicely. Miss Abigail is now a whopping 42 pounds and 47 inches. That puts her in the 3rd percentile for weight and the 5th for height. It doesn't sound like much but it's on the chart! Links to this post. Thursday, July 23, 2015. Only a child with Rhombencephalosynapsis would ask her mother to tape a reenactment of a fall. This kid kills me. Links to this post.
Rhombencephalosynapsis Website
In December of 2008, my twin grandsons, Tyler and Tanner were born. Early in the pregnancy it was discovered that Tanner had some type of brain disorder. The diagnosis of Dandy Walker Syndrome. And Joubert Syndrome were suggested. After birth and a MRI, he was diagnosed with a fused cerebellum. That evening his father and the doctor did research on the internet and discoved his condition was called Rhombencephalosynapsis.
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