INCLUDING RESOURCES ● RESEARCH ● INSPIRATION
School Shopping guide | | | | |
Summer Time Ends School Year Begins Summer is over and the kids are going back to school. Nathan (our Angel and youngest boy) is ready to enter kindergarten. We had our first IEP (Individual Education Plan) meeting with the school district and a separate meeting with the school. It has been very interesting to say the least… Now, we have experienced the heart racing frustration that so many parents speak of. So, I have included some helpful links that have been given to me as I prepared for the meetings. We are parents and the best advocates for our children and young adults. I wish you all the very best as you plan the upcoming school year for your kids.
Nathan and I at the ASF conference welcome reception dinner sitting upfront listening to fellow Angel parent, Singer - Song writer Regie Hamm (not pictured)
Over the summer I also had the privilege of attending the Angelman Syndrome Foundations Biennial Conference and Scientific Symposium here in my own back yard of Orlando, Florida. There was so many fantastic speakers, many times I wished I had been able to sit in two conference rooms at the same time. The chosen topics were exactly what I wanted to learn about from communication, dietary therapy, LGIT, potty training and so much more. It was great to get information on actions I can take Today and start helping my son.
With all the information I received, I was quickly reminded of all that I don’t know and have not yet implemented for Nathan. Intellectually I understand the quote “The more you learn, the less you know”, but this time I felt it and it really hit home. I experienced how difficult it can be to try and use a communication technique that I don’t understand or may not even like. I must admit it was heartbreaking and overwhelming. I am so grateful for the many options I have been made aware of by the families that have come before me and share their experiences with certain devices or services. Now the journey continues as we find what Nathan likes and will be able to learn to use. Thanks to the support of my family, I was reminded to just take one day at a time. So I would like to pass that message onto you, as we learn and share ideas let’s take it one day at a time. Lizzie Sordia Editor in Chief
September / October 2013
Our mission is to provide support to other Angelman families in South Texas, to spread awareness, and our ultimate dream is for an angel house where children with Angelman Syndrome can transition from the school system to adulthood. We also have participated as an official charity in the San Antonio Rock and Roll Marathon the past 4 years! Our future goals include a miniConference/workshop weekend for families in the surrounding areas and possibly our own 5k fun run race in the next 12-24 months!
The Angel Karly Foundation was started in 2009, and since then we have held a community wide awareness event, annual family picnics, we have sent families to both the ASF conference and FAST gala, and held an ABC therapy workshop.
Angels In Action
Back to School Shopping
Back to School Buyers Guide…………… A few products to add to your back to school shopping list.
12 Angels In Action – Eddyto’s story……….17 Angels In Action – Billy’s story………….
Does your child have a good teacher?..... By Lisa C. Gleeson MA SpEd.
IEP Tips…………………………………….…. Helpful links to resources to help parents Prepare for the IEP (Individual Education Plan)
Marital Stresses……………………….… By Marc Bissonnette Part 2 continues the shared experience of marital stress from life and having a child with Angelman Syndrome.
Happy Alternative Halloween……………… By Karen VanPuyenbroeck Suggestions for a fun and safe halloween.
Angel Lina’s testimonial on LGIT……...
Boost the immune system…………………..… By Sybille Kraft Bellamy Learn how we can help boost the immune system with prebiotics and probiotics.
Making Sense of it all………………….... By Ed Weeber, Ph.D
Back to school with LGIT…………………… By Sybille Kraft Bellamy Sybille shares with us helpful tips that help keep Max on tract with maintaining his LGIT diet as he goes back to school.
Understanding genetic classes in AS……… By Dr. Charles Williams
September / October 2013
ASSERT began in 1991 – although launched 1st January 1992 – as a support group run by families and for the benefit of families of people with Angelman Syndrome. ASSERT began with 15 families and these pioneers have subsequently been joined by more and more from within the UK and from places as far away as Australia and New Zealand and America as the diagnosis has become more widespread over the years. Dr Harry Angelman, from whom the condition was given its recognised name, was a paediatrician practising in the small Northern town of Warrington in the North of England near Manchester. In the early nineties Angelman Syndrome (originally known as ‘Happy Puppet Syndrome’) was still a little-recognised condition; although first diagnosed in the sixties by Dr Angelman, the paper he wrote was largely unacknowledged until it was taken up by Dr Charles Williams again in the late 1980’s as a condition worth studying.
ASSERT began because parents needed a positive message, practical support and realistic advice about the diagnosis and life beyond - they needed to have some idea of where the label “Angelman Syndrome” was going to take them and what the journey would be like. At the time there was another group call the ASSG (Angelman Syndrome Support Group) which had been formed some years
earlier, however the first ASSERT parents came together and set up the Angelman Syndrome Support Education Research Trust because they wanted more… a different kind of support than the ASSG could offer at the time. The founders of ASSERT, Richard and Alison Allen together with Elaine and Stephen Sears and Natalie Bradley, were determined that other parents should receive the help and information they had craved at the time they received their diagnosis, so that no other parents should feel alone unless they wished to be. Today, ASSERT has grown. At heart it is still a mutual support group but the charity run by a small team of dedicated voluntary trustees is now held in high esteem by both professionals and families alike. This year ASSERT is involved with the newly formed NHS-led clinic based in Manchester under the care of Dr Jill Clayton-Smith. Adopting a multi-disciplinary approach, family GPs are now able to refer cases to the clinic for holistic support in one place. The first clinic was a huge success and we are looking forward to further clinics being even more successful.
ASSERT Angelman Syndrome Support, Education & Research Trust www.angelmanuk.org
Email: firstname.lastname@example.org Contact: 0300-999-0102
In 2014 we will be holding our 8th biennial conference. These conferences are an amazing source of information and support for our families and they are looked forward to by families and trustee’s alike. 2014 will also be ASSERT’s 21st Birthday. During those 21 years we are extremely proud to have supported many families and carers with their roles of caring for loved ones with Angelman Syndrome. 2015 will be the 50th anniversary of the discovery of Angelman Syndrome. In those 50 years tremendous strides have been made by scientists and researchers both in the UK and internationally. We will be forever grateful to those professionals who have made it their mission in life to help further our understanding of this condition and who are looking for ways to improve the lives of our loved ones.
ASSERT continued –
We are thrilled to present “Lite the Night on FIRE to benefit FAST” in Boston, MA on Friday, Sept. 27th at Hotel Commonwealth from 7-11pm. This first of its kind event in New England will feature a silent auction, live band (Fusion), and unique feature of the night that will aim to illuminate the room in research donations. Glow wands are available for purchase online at http://www.firstgiving.com/fundraiser/daniellepinders/litethenighto nfireabenefitforfast for those unable to attend but still interested in being a part of this memorable experience . Event tickets are available at CureAngelman.org for $75 per person. Event emcee, AJ Crozby from radio station 92.5 The River, Boston. Guest speakers include: •Paula Evans-Founder and Chairperson of FAST •Becky Burdine-FAST Chief Science Officer Research suggests that a cure for Angelman Syndrome is within reach. FAST has a clear, direct plan to accomplish this goal through the funding of the FIRE Project. The only thing standing between individuals with Angelman Syndrome and a cure is the money needed for scientific research. The FAST Integrative Research Environment (FIRE) is a coordinated consortium of leading researchers working together to identify, characterize and implement new therapeutics for the treatment and ultimate cure of AS. The four inaugural researchers and Angelman experts (Anne Anderson, M.D., Baylor College of Medicine and Director of the Epilepsy Monitoring Unit of Texas Children's Hospital, Scott Dindot, Ph.D, Texas A&M University, David Segal, Ph.D, University of California Davis, Edwin Weeber, Ph.D., University of South Florida) bring unique expertise and perspectives to this endeavor ensuring results are brought from bench to bedside in the most efficient and cost effective time-frame possible. Join us and be a part of the miracle! For more information about Lite the Night on FIRE, please visit CureAngelman.org or reach out to one of the event planners below. Event Organizers, Danielle Pinders Judy Swanton Amy Girouard September / October 2013
How to Boost the Immune System The human digestive tract contains about 500 types of probiotic bacteria. These “good” or “friendly” bacteria help support the growth and repopulation of the healthy gut flora in the lower gastro intestinal tract. They protect against “bad” or pathogenic bacteria and help the gut immune system to develop. Healthy bacteria also produce essential vitamins, which have an important nutritional value.
Too much sugar and not enough fibers in their diet weaken the gut flora, by lowering the diversity of the probiotic bacteria. To improve your child’s flora you can supplement their diet with a probiotic – one of my favorites is from the Theralac Company. It is highly recommended to alternate probiotic supplements and strains to obtain a more diverse flora. Make sure you check their quality and potency. They should be shelf stable, bile resistant and a good description of the strains should be provided.
To keep our children’s gut flora healthy and populated with probiotic bacteria, it is essential to give them a diet rich in prebiotic food. Prebiotics are non-digestible food ingredients, which feed the probiotic bacteria that live in our digestive tract. It is key to vary food choices and offer a variety of gut boosting prebiotic ingredients to keep our children healthy. The more prebiotic food you offer the more probiotic strains bacteria they will have. Studies show how children loose bacteria strains from the time they are born to the time they start eating solid food.
sweeteners. Cultured butter and sour cream are great too. Microalgae are another option. They are easy to include in your meals. Spirulina chorella, for instance, can be mixed with food. It has very little taste and cannot be detected. Organic Miso is also wonderful to prepare broth, soup and to cook with vegetables or meat. A good choice of fruit, vegetables, whole cereals and legumes will provide the probiotic with the necessary energy to remain balanced. Insoluble fermentable fibers are not digested; they support the growth of the flora, enhance the immune system function and help calcium absorption. Children receiving the LGIT must follow a well- controlled diet. The low amount of carbohydrates allowed must include a rich ratio of fibers.
The other easy way to keep the probiotics well balanced is through diet. Yogurts are excellent for those who can tolerate dairy. Goat and sheep yogurt have extra form of probiotics, lactobacillus, acidophilus, bifidus, bulgaricus, thermophillus. Make sure they are free of sugar, high fructose corn syrup and artificial
I hope this information will support you and your child in having a successful year at school!
Angelman Today ● September/October 2013
IEP Individual Educational Plan If those three little letters cause your heart to race, here are some links to help you prepare for your meeting with the school. Special Thanks to our friends Kathy Anderson and Emilie Mullins for the resources.
IEP Online Resources What is an IEP? http://www.ncld.org/at-school/your-childs-rights/iep-aamp-504-plan/what-is-an-iep http://www.specialeducationadvisor.com/special-education/what-is-an-iep/ http://www.oafccd.com/factshee/fact20.htm
Key Terms for Special Education http://nichcy.org/schoolage/keyterms A Few Experts http://www.paulakluth.com/ Dr. Paula Kluth is a consultant, author, advocate, and independent scholar who works with teachers and families to provide inclusive opportunities for students with disabilities and to create more responsive and engaging schooling experiences for all learners. International Documents/Resources
A Document with Information on Australia, Canada, New Zealand, the UK and USA http://www.nda.ie/cntmgmtnew.nsf/0/393FEB D9B935DE01802570660054EC18/$File/IEP_ Summary_PDF.pdf Resources by Country/State Canada British Columbia http://www.bced.gov.bc.ca/specialed/ppandg.h tm http://www.bcssa.org/PDFs/Resources/IEP.pdf
Top 10 Questions to Ask At an IEP Meeting http://www.specialeducationadvisor.com/topten-questions-to-ask-at-an-iep/
Ontario http://www.edu.gov.on.ca/eng/general/elemsec/sp eced/iep/iep.html Ireland http://www.nda.ie/ U.S. Resources State by State http://nichcy.org/state-organization-search-bystate A Look at the IEP Document Itself http://www2.ed.gov/parents/needs/speced/iepguid e/index.html Additional Resources: Inclusion and AS http://mcdj.wordpress.com/2007/12/31/choosinginclusive-education-for-a-child-diagnosed-withangelman-syndrome/ IEP Goal Bank http://mcdj.wordpress.com/2010/03/14/iep-goalbank-again/ BOOKS: Including Students with Severe and Multiple Disabilities in Typical Classrooms (June Downing)
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It will soon be time for the children to go back to school: AS children in French school according to the 2005 law on legal rights of disabled persons, all children have the right to go to school in France, no matter how severe their disability is. Going to school is not mandatory, it all depends on the degree of autonomy of the child and on the dialogue between the family and the teachers. Disabled children can be taken care of by an extra adult, helping the child with ‘everyday life tasks’ such as potty training, eating, putting cloths on and off…etc., but also in school tasks (understanding orders, having adapted responses and behaviors, doing things along with other pupils…).
Education Guide for Children with Angelman Syndrome
Today, a certain number of AS children attend kindergarten between the ages of 3 to 6 for several hours per week to full time. All the others attend special schools for disabled children and young people from 3 to 20 years old.
Associations Française du syndrome d’Angelman
Based on the experience of several families, AFSA (Association Française du syndrome d’Angelman) created a special guide to support parents through legal and administration questions and over all to help parents and teachers to build a positive strategy on the school project of every child, stressing all the peculiar aspects of Angelman syndrome. The guide (in French) is split in two parts:
To learn more about AFSA, founded in 1992, visit us at: www.angelman-afsa.org
one for the family and the other for the school teacher. Some working documents (description and assessment of the child, targets, follow-up work-book, examples of activities adapted to an AS person…) are available on AFSA website. The guide is on sale at the following link: http://www.angelman-afsa.org/le-guide-de-lascolarisation-i32.html
September / October 2013
Angels in Action
With Angel Mama Linda Rafert Yoakam
Q. Tell us about your favorite outings? Billy loves to be entertained. And he’s not picky. He enjoys movies, sporting events like minor league baseball or indoor football, local community plays or Broadwaycaliber plays, musicals, concerts. Those are some of our favorite outings. Because he enjoys outings so much, we’ve resorted to season tickets to events. Swimming and water activities are not the draw they once were in his childhood.
Billy understands more than he’s given credit for…here he is at the Boston Public Library making sure I don’t miss the beautiful paintings on the walls being described by our guide.
Q. What do you find most challenging about your travels with Billy? Bill loves to travel. Car, plane, train, boat—loves them all! I’ve found employees to be more than generous with offering assistance; from porters on the train, to TSA sending us thru the short line, to stewards giving him extra snacks. I can think of a few challenging areas. WWW.ANGELMANTODAY.COM
Transitioning surfaces or levels has been difficult since walking began, I’m guessing this comes from depth perception processing, but I now see it going up train steps, from boat to dock or gangway to plane. Another problem is toileting, especially on planes. We all know that area is built for less than 1 person; definitely NOT two. We try to avoid the need, not always successfully. Showering in those small hotel bathrooms; for that reason, I’ll ask for one of the accessible rooms. And finally, his diet. He’s on a gluten-free diet to help with behaviors. Any special diet for any individual traveling is not easy.
No mater where or how we travel; Billy always wants to know where he’s going. This was on a San Francisco BART train. Q. What do you find most rewarding? Bill is my joy. I find the joy he brings into my life to be most rewarding. I’m happiest for him when he is around others that are happy being around him and reflecting his joy and happiness. It’s the circle of joy!
Q. How do you keep your cool in stressful situations that involve your attendance at Angel events? What cool? I’m a crazywoman at Angel events! Bill feels the love in those situations and is always on his best behavior. And 26 years of practice doesn’t hurt!
The ASF Walk-a-thon day is one of his yearly highlights; total chaos; total acceptance. Q. Colin Farrell seems quite fond of your son; referring to him by name at the FAST (Foundation for Angelman Syndrome Therapeutics) Gala. How did Billy develop this acquaintance with the celebrity? The friendship developed like any other friendship: They met at a social event, hit-it-off, and the rest is history. Billy and Colin Farrell met at Bill’s first gala in 2009, when Bill was attending as my date. Billy knows no boundaries, has no ego, has no patience. He walked right up to Colin and gave him one of those famous hugs, as Bill did everyone that night. September / October 2013
Does My Child Have a Good Teacher?
child? Do they acknowledge that parents are the real experts when it comes to their children? Yes, after we have taught your child for a couple of years we may know something about your child, at least when they are at school, but ultimately you are the experts.
2. When you first meet the teacher, is he/she already familiar with your child’s IEP, prior testing and anything else they may have found in your child’s file? This is usually the first thing I do when I find out who will be in my class. A teacher can also hunt down prior teachers to find out missing or needed information. WWW.ANGELMANTODAY.COM
3. Is he/she willing to find out more about the types of issues your child may have, medical, educational and emotional. There are plenty of conferences out there that may benefit her/his teaching of your child and the rest of his/her classmates. School districts will often pay for all or part of conference attendance. There are websites and some great parent listservs that you can read or join. It’s been my experience that most parents are more than happy to give you some of their hard -won knowledge.
4. Do you feel as though you are part of your child’s educational team? Not just around IEP time, but any time issues arrive concerning your child’s education? Speaking of IEP’s, does your child’s teacher consult you about concerns you might have in creating the next IEP? Does he/she let you know that you can call a meeting at any time you feel one is necessary, it does not have to be annual and that it is a living document, not something set in stone?
5. Does your child’s teacher send home a note daily or as often as possible? If your child is non verbal, you may have no idea what went on in his or her day today. Typically I do a checklist and written notes of things that may have stood out that day. If there are specific things you really want to know, please ask for those as well. There will be days when you may not get a note. For me, that usually means that the end of the day was
1. Has the teacher asked you questions about your
When I went into the field of teaching in the public schools it was after I had my three children and finished my education. I was so excited to finally start my “dream” job and naively thought most teachers, especially those who taught students with more significant disabilities, felt the same excitement and commitment. I have since found that this is not always the case. Here are 9 questions you might want to ask yourself about your child’s teacher in order to ensure that your child is getting the best educational experience possible. - Lisa C. Gleeson MA SpEd.
so busy or hectic that I was too busy dealing with my students to write the notes, but hopefully that doesn’t happen often. Conversely, most teachers would love it if the parent would write a note when something out of the ordinary happens with their child. Examples would be, did they sleep, did they eat that morning, was there unusual seizure activity? Your child can’t tell me if they need extra TLC that day, I am counting on you.
6. If your child is in a self contained classroom, does the teacher have plans on how to create inclusion times or activities. When I taught elementary school students with multiple disabilities, they all had an opportunity to have inclusion in the kindergarten classroom accompanied by a paraprofessional or myself. As they got older I tried to choose specials that they particularly had an affinity for such as art, music, PE. There can also be inclusion in the academic classes and reverse
September / October 2013
7. Does the teacher have a good relationship with the school’s nurse? When you work with students with more severe physical needs, the classroom teacher and school nurse often have to work hand in hand. I work hard to help the school nurses I work with understand how my students “work” and familiarize them with one another. School nurses are great resources for finding out information on many of the health issues your child is dealing with.
8. That leads to the next point. Do you feel as though your child is in a safe and supportive environment? Children can get hurt at school, especially children who have seizures, sensory issues and/or other disabling conditions. You should have the opportunity to see your child’s classroom and make suggestions regarding your child’s safety. Of course you will have to remember that the classroom also has to be conducive to the safety and education of the other students. Even if the classroom is safe, accidents will still happen. We are all human, we will make mistakes, toys will be left on the floor, and children will zig when they should have zagged. You need to be able to trust your child’s teacher to care for your child to the best of their ability, get medical care when needed and give you a call (or the nurse can) if your child gets hurt.
inclusion and “buddies” is another good way to keep kids together. Kids should also be included in school wide activities such as assemblies. Of course this is dependent on each child’s tolerance. Some don’t do well with crowds or loud noises and although a tolerance can sometimes be built up, there is no reason to make them miserable. Kids should also be out on the playground together.
9. Do you feel as though this teacher will push your child to reach her full potential? Is your child’s teacher excited by their potential? Every child will grow and has the ability to be the best person he or she can be. They shouldn’t be compared with each other or kept back because children with _________ (fill in the blank) can’t do that. If your child’s teacher isn’t excited about being a teacher, they probably shouldn’t be your child’s teacher.
Would every parent I have ever worked with say yes to all those questions about me? I would hope so, but I am sure that is not always the case. It is definitely what I strive for but let’s face it, I am only human and would not claim that I get it right every time. The same can be said of any teacher. I do think, though, that if your child’s teacher is constantly attempting to achieve the above, you can have some trust that your child is in a safe and enriching environment in which he/she is encouraged to flourish and grow. What more could we hope for with any child’s education? Written by Lisa C. Gleeson MA SpEd. Bio: I have been teaching students with moderate to severe multiple disabilities in public school systems for nearly 20 years now, ranging in ages from preschool to middle school. I have attended four Angelman Syndrome Conferences and spoke at the conference in Chicago, IL. I have had the opportunity to teach 4 students with Angelman Syndrome (two at the same time!) and many other students with chromosomal abnormalities. My Masters degree is in Special Education with an emphasis in severe multiple disabilities and I am certified in the state of VA in multiple disabilities (adapted curriculum), intellectual disabilities, emotional disturbances and learning disabilities.
Have a Happy "Alternative" Halloween I have a confession, Halloween terrifies me! But not because of the ghouls or the goblins but because of that awful killer combo of artificial food dyes and sugar. Its lurking around every corner, the friendly old woman who lives next store is pushing it... At school, they are having cavity prevention today while pumping your kid full of cavity causing critters in the form of a very sweet, very innocent, beautifully decorated cupcake confection... Even your very own mother has a secret stash of the "good stuff" in her coat pocket. Oh! And you must go Trick or Treating! It's tradition and you want your kid to have this "typical" childhood experience right?
Ok, so here's how I have kept my Angel free from the "killer combo" (the combo has caused her to have seizures) for the past 8 Halloweens and still managed to have fun. Well, initially it was important to go Trick or Treating because my older kids were still participating in this activity at the time; so, I made it a tradition to have my Mother in law over to make my kids' favorite chili recipe the day of Halloween. We would get the kids to eat as much good, healthy, all natural chili as we could get them to eat before commencing with the festivities. The idea was to limit candy consumption with full bellies. We'd buy organic, dye free candy for our Angel and allow her to Trick or Treat as usual but when she asked to eat her candy, we'd give her the organic stuff. Unfortunately, this candy was still full of sugar so it was better but not good. I was so glad when my older kids no longer wanted to Trick or Treat because I could ditch the candy scene altogether! By Karen VanPuyenbroeck
activities to try are: Petting zoos, hay stack rides, haunted hay rides, apple bobbing, a party at your own home that would include only allergy friendly parent approved foods and activities. Also, local churches often offer fun alternatives to Trick or Treating, like fall festivals, this could be a great
Now lets talk costumes: I needed to learn to appreciate that my daughter has some sensory issues, nothing too major but she really doesn't enjoy scratchy materials or things on her head. And lets not even talk about anything crazy like a mask or makeup that I would expect her not to smear. A great costume for a girl could be a cheerleader; in Halloween shops they sell these in satin with an elastic waist and no buttons. I can still put a little light pink makeup on her and she can carry the pom poms when she feels like it and wear her hair any way she likes and still pull off a super cute look without ruining her costume. A boy could easily be a sports figure just by wearing his favorite player's jersey and carrying the appropriate ball when he feels like carrying it.
More tried and true Halloween
choice but it might not be a candy free zone; here's a link to a great article about religious friendly activities http://www.lifeway.com/Article/Fallfamily-fun. If you put in a little thought and little web surfing in ahead of time, you will surely find something enjoyable to do with your family that will create lovely memories with safety in mind.
Any costume is fine as long as you will not be heartbroken if your child refuses to keep head pieces on, rips tales or wings off etc... Try to pick a costume where the design and fabric is very similar to clothes your child would wear in everyday life in order to keep frustration and disappointment to a minimum. I share all of this with you because I have attempted to turn my Angel into a perfect little princess many times, only to come to the realization that if she wouldn't wear this stuff any other day, why would I think she would wear it on Halloween. So lets keep it safe, lets keep it enjoyable and save the killer, candy combo for.... Hmm... for someone you don't like.
September / October 2013
Angels in Action
ddyto was born a healthy baby at 37 weeks. He has a sister aged 4 and lives in Guatemala, Latin America. Eddyto was diagnosed with Angelman Syndrome, del +, Class II, at 11 months of age.
But today, I want to tell you the story of how Eddyto is evolving in his gross motor skills. He started crawling military style before his first birthday and kept that technique for 8 months. We thought he would never crawl four point but when we went to Austria to visit my mother’s family we spent a lot of time in the garden and Eddyto realized that dragging his body on the grass did not work so he changed his approach and voila, he started to four point crawl!
We have been working hard ever since with nutritional therapy, supplements and the NACD program. Eddyto has come a long way and we are doing everything we can to support him to achieve his maximum potential in health and development. In addition to having Angelman Syndrome, Eddyto took another hard blow at 7 months of age. His third set of influenza, DTP and hepatitis B vaccines was too much for his body to handle and he lost previously acquired skills, decreased eye contact, stopped babbling, had a sudden onset of hypotonia, which had not previously existed and drifted off into his own world. We quickly implemented nutritional therapy and supplements and we have been able to get him back on track and he now loves to smile at everyone again. Lesson learned. No more vaccines!
and forth between the sofa and coffee table and balances his body preparing himself for independent standing. Every once in a while he will let go for a second and test his balance realizing that he still needs to hold on to something for now. We received a wonderful Rifton walker by another angel family and had started to use it, but we decided to hold off some time till Eddyto is ready to walk. We work hard on Eddyto’s balance and do 5 to 6 hours of therapy daily. Feel free to check out Eddyto’s video at http://www.youtube.com/watch?v= 4YFqDIDLq20 Last but not least I would like you to remember - Never put any limitations on your Angel.
We had not trained four point crawl in therapy since we follow the NACD approach whereby the body needs to develop gradually in his own pace and therefore you do not push the next developmental step but prepare everything needed so the brain and body get there on their own. It was amazing when he started to four point crawl it was so natural, as if he had been doing it forever. This is the beauty of the body, once everything is ready, things run smoothly. Now, Eddyto is working on his walking skills by cruising along furniture and pulling himself up on anything he can get a hold of. He does very well; he reaches back
Assisting with Education and Angelman Syndrome Foundation Individual Education Plan Bank With the 2013-2014 school year already starting in some parts of the country, it is never too early or too late to be thinking about your student’s IEP and the short- and long-term goals for your student. The Angelman Syndrome Foundation Individual Education Plan (IEP) Bank was designed to assist families in planning educational and developmental goals for their loved ones with Angelman syndrome. The IEP Bank is a resource for families, educators, therapists and anyone involved with your student and her/his IEP. This is the ultimate tool for you and your student’s team to help your individual with Angelman syndrome achieve his/her educational and developmental goals. The Angelman Syndrome Foundation IEP Bank includes several unique features that are unavailable in other IEP resources: •
Customization. The ASF IEP Bank was designed specifically for individuals with Angelman syndrome. The ASF IEP Bank features goals and objectives that have been used by individuals with Angelman syndrome and supported by their educational teams.
Individualization. The ASF IEP Bank allows you and your team to create a plan specific for your individual with Angelman syndrome. Goals and objectives were created based on skills and skill acquisition, not age or grade level.
Interactivity. While a majority of IEP resources are static, the ASF IEP Bank has many interactive features. The ASF IEP Bank is searchable by keyword, category and implementer. Additionally, you are able to share—and we encourage you to—your goals and objectives with other families through the ASF IEP Bank.
Operating similar to a traditional bank where you make deposits and withdrawals, the Angelman Syndrome Foundation IEP Bank enables you to enter (deposit) your individual’s goals so they can be shared with others. This allows all families to learn from one another by making all goals and objectives available to other families (withdrawal). Through the collaboration provided by the IEP Bank, ideas and suggestions address nearly every aspect of educational and developmental progress. While not every goal or objective may be appropriate for all individuals since everyone has his/her own goals and milestones, goals and objectives can be adapted or customized to address the needs of your individual student with AS. To explore the Angelman Syndrome Foundation IEP Bank, please click here. Available via that link are also IEP goal instructions and access to an IEP Checklist iPhone application.
Int’l (630) 978-4245
Development ASF Conference, Your Ultimate AS Resource The Angelman Syndrome Foundation’s 2013 Biennial Conference, Championing Progress, was hosted in July at Walt Disney World’s Swan & Dolphin Resort in Orlando, Florida, and it was a great success! The ASF Conference has continued to be the ultimate Angelman syndrome resource for families of individuals with Angelman syndrome, exploring all aspects of living with Angelman syndrome, and we at the Angelman Syndrome Foundation appreciate everyone who attended and the collaboration that occurred. The 2013 Conference was attended by hundreds of individuals from all across the globe, representing more than 34 states and individuals from 11 countries. Attendees were able to access, in-person, a variety of educational resources available at the Conference. Keynote speakers addressed a number of topics, including communication strategies, potty training techniques, dietary needs, inclusive education and IEP goals, and seizures. Breakout sessions provided collaborative opportunities among attendees and presenters, who were able to discuss open and honestly the myriad of challenges and successes related to Angelman syndrome. Select keynote speaker presentations are available on the Angelman Syndrome Foundation’s YouTube channel by clicking here. Audio recordings and handouts from all presentations and breakout sessions are available for purchase by clicking here. A highlight of the 2013 Conference was the research panel discussion. This panel featured Angelman syndrome researchers from several institutions discussing the current state of Angelman syndrome research, latest developments, and a forecast of where research is headed. This lively discussion is available to view on the Angelman Syndrome Foundation’s YouTube Channel by clicking here. Details about the 2015 Angelman Syndrome Foundation Biennial Conference will be announced in 2014. With the Biennial Conference having taken place in Florida this year, the location will move to the Central region in 2015. The Angelman Syndrome Foundation alternates the location of the Biennial Conference to different regions of the country to make it more geographically accessible to all families. The location alternates between the West Coast region (west of the Rocky Mountains), the Central region (between the Rocky Mountains and the Eastern Standard Time Zone), and the East Coast region (Eastern Standard Time Zone). Thank you to all families and individuals with Angelman syndrome who supported or attended the 2013 Biennial Conference, Championing Progress…it was a tremendous success!
Pragmatic Organisation Dynamic Display (PODD)
Gayle Porter & Ursula Cranmer
New Zealand was fortunate to have Gayle Porter visit Auckland & Christchurch in June, to present an Introductory 2 day PODD Workshop, hosted by Talklink (www.talklink.org.nz) Gayle Porter, founder of the PODD system of communication: CV , and background info PODD books : PODD and Partner AssistedCommunication Spectronics: PODD-communication-books-direct-accesstemplates
Gayle explained and demonstrated how this unique language system functions; and how to make and use these light-tech communication books for best practical effect. Below is a freshly laminated set of pages with 12 icons per page, made at school for my son, Andrew. Today I will punch the 3holes and bind the pages with cables. It will then be ready for use – firstly to be modelled by us (me/carers/teachers), and then, once he is familiar with the system and can navigate the pages, for Andrew to use to communicate. All it takes is a bit of practice for a life-changing outcome. I can’t wait to get started!
The Angelman Network seeks to
connect and support people impacted by Angelman Syndrome. We offer an active website, which can be used as a helpful resource for families and professionals, both in NZ and around the world. www.angelmannetwork.com Our Information Pages are regularly updated to include new/improved ideas and links as these become available. We actively promote and support the progress being made with world-wide research on AS.
The Angelman Network is on FACEBOOK as: Non-profit page: the angelman network Informal group: facebook.com/groups Also on FACEBOOK – A group for those interested in sharing information about the following communication topics: PODD, ALDs, Literacy & Angelman Syndrome group: https://www.facebook.com/groups/1857 01601569100/ For those following the discussions on New Zealand Manuka Honey and its medicinal properties, here is an informative website:
http://www.umf.org.nz/umf-trademark ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Disclaimer: Links to other Internet sites are for the convenience of all web-users. The Angelman Network is not responsible for the availability or content of these external sites and we do not endorse, warrant or guarantee any products, services or information that may be offered at these sites.
Marital Stresses “It is both the words you choose, as well as your tone that makes the difference.” “Look, I work all day, I bring in all the money, I pay for everything in the home, as well as your vacations – I don't think it's unfair that I ask you to pull your own weight” Guys, (or gals, if the roles are reversed) if you're thinking that my response was perfectly reasonable – Bang your head against the wall, because it's about the worst thing you can say. How do I know this? Because I had a very, very well respected psychologist and marriage counselor tell me so. We went to see her, many, many years ago and I will admit up front that I went in there, fully expecting to be vindicated, to have this counselor tell my wife that she was being completely unreasonable and that it was only fair for her to “make up for” the massively imbalanced financial contributions to the marriage. One of my complaints was the lack of intimacy in the marriage, amongst other things. Don't get me wrong: She did have issues that needed to be dealt with, but, the counselor responded with this: “So, Marc, let me see if I understand, before I make a comment, okay? Your wife gets up in the morning, makes the children breakfast, ensures they're bathed, including your severely handicapped, wheelchair bound son, gets him dressed, gets the other two on the bus, pushes Liam to school, then comes home, cleans up the house,
(continued from July edition)
washes, folds and puts away the laundry, then gets the kids home, which includes pushing Liam back from school in the wheelchair, cooks and serves dinner, washes the dishes, helps the kids with their homework, gets them into bed, makes sure Liam has his medication, cleans up the house from the mess made from the kids coming home and then... You expect her to want to be intimate? Is this an accurate summation? “ To put it mildly, yes, I felt like an idiot. It took a professional to teach me what should have been blindingly obvious: I could earn a million dollars a day, but if my spouse looks at the house as nothing but a never ending workplace, then the very idea of sex was just another job.
Folks: If sex and intimacy becomes a job, you are in serious trouble. That is the key to understand: Contributing to the marriage isn't just about the money that you earn or about the housework you do: It's about feeling that you are an equal in the partnership. Even when the circumstances are difficult. That saying that “money can't buy happiness” - It's true. It may well buy you some additional options in life, but it absolutely will not buy happiness. So how, exactly, do you get happiness? Believe it or not, the answer is very simple: You get happiness by giving happiness. This isn't a Kumbaya moment: This is about giving your partner what makes them happy. Yes, ladies, I am about to talk about sex. (Guys, don't start pumping your arms in victory: I haven't gotten to us, yet); Ladies, unless your partner has specifically and emphatically told you that they are not interested in sex, the chances are very good that they'd like to see a little more of it.
The chances are even greater that they'd like to see a little more of it without always being the one to ask, initiate, bribe or beg for it, either. Now: Some readers right now are shaking their heads and thinking “Hmph. Men. That's all they think about: Sex.” Wrong. Here is why you are wrong. “Getting” sex is easy. There are plenty of women out there who are willing to “give sex”. There are plenty of websites where the only purpose is to hook up for sex. (Yes, Virginia, women enjoy no-strings sex, too). But here's the rub: According to “"Love, Sex and the Changing Landscape of Infidelity", The New York Times, October 27, 2008”, the largest, longest running and most consistent surveys done with regards to extra marital affairs, the infidelity rate for men is 12% and women, 7%. It can vary by year and by age group, but the numbers are relatively similar. If “all men want is sex”, the infidelity rate should be higher – a lot higher – as in, closer to 90%. Yes, men do tend to want intimate relations more often than women (though, as it turns out, not by nearly as wide a margin as historically thought),
September / October 2013
Continued…. BUT: They don't want sex with just any woman: They want sex with their spouse. Sex, for men, is an emotional connection with their partner. To be fair, many men do not say as much out loud, but it is indeed a lot more than just the physical sensation. So yes, ladies, it is YOU, specifically, that your man wants to be intimate with – to feel special, to show you that he thinks you are special, to show you, in his way, that he loves you and only you. Now, guys: Although many of you are reading the above and thinking “YES! THIS! THIS IS WHAT I'VE BEEN TRYING TO SAY!” - Hang on a sec: Sex, to us guys, is important for our emotional well-being and the feeling of connection to our spouses: There's no denying that (I'm speaking in generalities, here: I am well aware there are exceptions, please don't bombard me with email about that which I already know), BUT: That is OUR emotional connection with our spouses: It is not necessarily THEIR emotional connection with US. One of the most frequent complaints I have heard from women is that they want to be physically close to their partner without the expectation of it always leading to sex. Yes, one of those women I've heard it from was my own wife, I'm not going to lie. So guys: A kiss hello and a long hug when she walks in the door, followed by “Can I make you a coffee?” or “Come in, I've got dinner on the table” is a really good idea. A neck massage and only a neck massage every now and then, also a good idea. Sitting side by side, holding hands, or arms around each other, watching a TV show or a movie together; +1 for that, too. And guys, I have to point this out, because I was guilty as sin of it, myself; if your spouse spends all day in the home doing work, she actually will be tired at the end of the day. So how do you help make sure she's
got the energy for a little excitement when the kids finally get to sleep? Easy: Reduce the work that's making her tired. Do the dishes. Help with the laundry. Take over cooking a meal. Bathe the kids and get them to bed. My mother had an excellent saying: “There are no such things as 'womens jobs' or 'mens jobs' – it's all work that needs to be done. The laundry really doesn't care what your internal plumbing is – it just needs to be done”. So here we are, with two simple solutions to showing each other how easy it is to show the other that they matter, but why isn't it done more often? The answer, sadly, is often “the tally system” - “He hasn't mowed the lawn in a month, it'll be a frosty Friday before he sees me without a bathrobe on!” - “She hasn't shown me any lovin' in a month – It'll be a cold day in aich-ee-double-hockey-sticks before I mow that lawn!” See? Vicious, self-feeding, eternal circle. Someone has to man – or woman – up and give the happiness. You can't think of your “tally” for this week or even this month. That's a lose-lose proposition. Life simply does not work that way. Guys, maybe you do go out and mow the lawn or make dinner or take the kids out during her favorite show without being asked more often in the summer. Big deal. It'll turn out that there will be a period in time where you come to bed more than a few times in a month, expecting to hit the sack just to wake up to face the grindstone the next day, only to find your lovely wife in a negligee, with candles lit in the bedroom. The point is that you have to create the conditions – and you have to be willing to do it not based on a schedule, not based on a “who's done more this week”, but to do it because by making your partner happy, you become happy.
And why do all this? Is it to get more sex, or to have the dishes done so you can watch Greys Anatomy? Is it to reduce stress, get rid of the ulcers or lower your chances of divorce? Let's be honest: The answer can be yes for all of the above, but, more importantly: At the very beginning of this article, I listed just some of the stresses of an AS family: You make your partner happy so that they make you happy so that when you face these stresses – and you will – you are not facing them alone. Waiting for your child to come out of surgery or come out of a seizure sucks – But it sucks a little less when you've got someone at your side, letting you know that you're not the only one worried. Cleaning up puke for the fifth time in a day, scrubbing poo off walls, or picking up two loaves of bread that have been turned into confetti and mashed into the sofa is absolutely no fun at all – But it's a little less “no fun” when there's someone right there beside you, helping clean up the mess (not to mention it gets done a lot faster) At the end of the day, both partners are facing – and dealing with – daily stresses that most people absolutely could not handle. That fact alone should be enough to make you look at your partner and think “I'm going to make him smile, today, no matter what!” - It should warm your heart and make you think “She's obviously just had a really bad day – I'm going to turn this evening into something she'll remember forever with a smile!” Because, folks, you chose your partner: Your partner chose you: You are both raising an Angelman child together and that, even though this has so many worries, frustrations and terrible moments also has many, many moments of joy, triumph and pride. By Marc Bissonnette September / October 2013
What people are saying about Angelman Today
Thank you so much for this new magazine. My daughter and I read it with real pleasure. I canâ€™t wait for the next edition!
Thank you to everyone who contributed to the success of the 1st edition of Angelman Today! With the collaboration of information from our foundations, scientific researchers, parent experiences and the support of products and services we can improve the lives of our loved ones with Angelman Syndrome Today!
September / October 2013
Family Conference – Dublin July 2013. ASI were delighted to welcome Dr. Ben Philpot to Dublin recently, whose trip afforded the opportunity to host a parent conference addressing research, communication and community living. The day’s three speakers focused on topics which had been raised as areas of interest by parents.
Heather Crawford, MBE, lead professional speech and language therapist for South Eastern Trust, Northern Ireland gave an insightful presentation throwing up as requested ideas new to a lot of parents, such as looking at what our AS children/adults need to communicate for and how to set communication boundaries to support non-verbal communication.
Dr. Ben Philpot, PHD and Associate Professor Department of Cell Biology & Physiology, University of North Carolina’s presentation on the current research offered parents a clear window to the high tech world of the path from the cell dish to finding compounds which may support therapeutic approaches for Angelman Syndrome. His in depth presentation greatly helped us to understand the overall picture of current research and its challenges.
and this in fact is an area we will aim to return to at a later parent forum. This parent conference was one of four regional workshops hosted this year by ASI and they provide a key opportunity for families to meet regionally as one parent commented –“ with people who get it”. As our speakers kindly sat though coffee and lunch afterwards queries and questions were given an airing often not possible at larger events.
The sessions from the workshop are available to view on www.angelman.ie – Youtube with Dr. Philpot’s being made available in the coming weeks.
Heather Lynch and Siodhna Kavanagh’s joint presentation from Camphill Communities offered a unique insight into the journey and opportunities this international organization can offer families though its 22 community based centres and projects in Ireland. Heathers focus on the transition from post school to further educational and living opportunities gave food for thought to many parents who have not yet reached this point
Dr. Ben Philpot, Siodhna Kavanagh (Seated), Heather Crawford and Heather Lynch.
For further information please contact Sara Hetherington at Admin@angelman.ie
Understanding Genetic Classes of Angelman Syndrome Dr. Charles Williams Conducting blood testing to diagnose Angelman syndrome (AS) can be a complicated matter. Here I summarize the different genetic causes of AS and provide general guidelines about how to use genetic tests to confirm the diagnosis of AS. First, let us look at the genetic mechanisms that cause AS: A chromosome 15 pair is illustrated for each class depicted but the other chromosomes are not shown. The P indicates the maternally-derived chromosome and the M indicates the maternally-derived one. The shaded chromosomes have a paternal pattern of gene functioning while the unshaded chromosomes have a maternal pattern. AS can be caused by either a large chromosome deletion (70% of the time);
a disruptive mutations in the UBE3A gene inherited from the mother (indicated by the X); inheritance from the father of 2 normal number 15 chromosomes (e.g., paternal uniparental disomy [UPD]); or an imprinting defect (ID), occurring when the chromosome 15 inherited from the mother has the paternal pattern of gene functioning because of a problem in the imprinting center (denoted by the small open circle).
In addition to these mechanisms, a clinical diagnosis of AS may be given even though the genetic testing is normal. The percentages indicate how common each mechanism occurs. How do we use genetic testing and what is the sequence of testing? There are many pathways to diagnosis for families undergoing testing for AS but the most common testing pathway is summarized here:
September / October 2013
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September / October 2013
Making Sense of it All By Edwin J. Weeber, Ph.D.
Many of you reading this magazine are more immersed in medical science and scientific discovery then most of the population. With a focused eye on the latest work being performed in the field of Angelman syndrome, there are reports, papers, talks and posts that seem to be in constant conflict. It's important for you all to know that this is actually a good thing! Rarely are there "eureka" (I've found it) moments in science. Instead we follow our instincts and often let the results of the science lead us down the path of discovery. Sometimes, even when discoveries are made they are not immediately accepted in the broader field. With this in mind, I have a favorite story that I often tell to new graduate students about two very famous scientists: Camillo Golgi and Santiago Ramon Y Cajal.
We need to go back in time to the 1800s when the Reticular Theory predominated science. The Reticular Theory maintained that the nervous system was a continuously connected network of fibers or a "reticulum". Cells were known at the time as the basic unit of life, but the human brain and that of other mammals
at a gross (really gross) level looked like just a bunch of mush. Camillo Golgi, a neuroanatomist, was a strong proponent of the Reticulum Theory and when Cajal suggested that neurons were discrit cells that made specific connections to other neurons (The Neuronal Doctrine) Golgi publically ridiculed such a thought. Cajal was undaunted. The complexity of the brain and subsequent complexity of the human cognitive strongly suggested that complex interactions of specific types of neurons were needed. In other words, neurons needed to be independent units and allow signaling with directionally. In order to convince others of the Neuron Doctrine he needed to show that different types of neurons existed and that these neurons connect to other neurons at distinct places (synapses). Golgi had developed a unique staining method for looking at neurons. This basic method could impregnate cells to see their structures under a microscope. Today this is referred to as Golgi staining and is used today in many laboratories, including my own. Cajal used Golgi's new technique to show these synaptic connections and garner support from other scientists that the Neuronal Doctrine should
replace the Reticular Theory. Golgi, despite this evidence, never gave in and continued support the Reticular Theory. Santiago Ramon Y Cajal was awarded the 1906 Nobel Prize for Medicine along with Camillo Golgi for the development of the silver nitrate impregnation technique (Golgi Staining). Golgi's 1906 acceptance speech was a well worded and polite attack on the Neuron Doctrine. Cajal's speech was a little more magnanimous and he acknowledged that without Golgi's technique the Neuron Doctrine would not have gained support. The reason I tell the story to burgeoning new researchers is to let them know that science is not mathematics. There is often no correct answer at the end of a single experiment, especially for the really big, complicated questions. The culmination of many types of scientific work and contributions of many researchers is what finally addresses all the conflicts, allowing for the best possible final product. This takes time and countless hours in the laboratory, discussing conflicting data from others and sometimes looking beyond the single graph
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of data or talk at a conference. It took time and data for the Reticular Theory and eventually the Neuronal Doctrine. So it goes with Angelman syndrome research; it is evolving. In the next issue we can discuss the accumulation
of recent papers and published research and what it means for the Angelman Doctrine. On a side note, Cajal and Golgi remained friends throughout their careers despite being on opposite sides of the Neuronal Doctrine.
Article of interest:
Title: Topoisomerases facilitate transcription of long genes linked to autism Authors: Ian F. King, Chandri N. Yandava, Angela M. Mabb, Jack S. Hsiao, Hsien-Sung Huang, Brandon L. Pearson, J. Mauro Calabrese, Joshua Starmer, Joel S. Parker, Terry Magnuson, Stormy J. Chamberlain, Benjamin D. Philpot & Mark J. Zylka Abstract: Topoisomerases are expressed throughout the developing and adult brain and are mutated in some individuals with autism spectrum disorder (ASD). However, how topoisomerases are mechanistically connected to ASD is unknown. Here we find that topotecan, a topoisomerase 1 (TOP1) inhibitor, dose-dependently reduces the expression of extremely long genes in mouse and human neurons, including nearly all genes that are longer than 200 kilobases. Expression of long genes is also reduced after knockdown of Top1 or Top2b in neurons, highlighting that both enzymes are required for full expression of long genes. By mapping RNA polymerase II density genome-wide in neurons, we found that this length-dependent effect on gene expression was due to impaired transcription elongation. Interestingly, many high-confidence ASD candidate genes are exceptionally long and were reduced in expression after TOP1 inhibition. Our findings suggest that chemicals and genetic mutations that impair topoisomerases could commonly contribute to ASD and other neurodevelopmental disorders. Topoisomerase inhibitors are being considered as a potential therapeutic for AS. This article exemplifies the non-specific actions of topoisomerase inhibitors on many genes and suggests a link between chemicals that may act on topoisomerases and Autism.
September / October 2013
Hi, my name is Autumn. I was a tired, out of shape mom who put myself last on my â€œto do listâ€?. That all changed when a friend showed me a way to get healthy and gain energy! Because of that life changing experience, I became a Health Coach and my focus is on helping special needs parents , like me, who want to get healthy and gain the energy that is needed to meet the special demands on our lives with vigor. Contact me for a free consult at 386-405-9864 or AutumnL4@aol.com or Facebook www.facebook.com/autumn.mcleod1 For every Angel parent who chooses to accept the challenge, I will donate $20 to a very special AS project that will be of great benefit to our community.
Going Back to School and Maintaining LGIT By Sybille Kraft Bellamy
Going back to school for LGIT students can be easy to prepare. Personally, I consider Max as being allergic to sugar! The same way he wears a red wristband in the Hospital Warning of Dextrose/glucose allergies, his teacher, aides and therapists are informed about his ketogenic diet. It is one of the main items on his IEP. We have a controlled protocol with the staff that lists the food allowed and the amount authorized. I prepare Max’s lunch daily and if he did not eat the way he should for his breakfast I write a note in his communication book alerting the staff. They will try to give him an early snack. He eats his lunch in the school cafeteria. The smell of food will sometimes bother him so Max will eat a cold meal for lunch most of the year. If Max is more hungry than usual they can give him extra peanut butter, almond butter and seeds with coconut milk. Each pack has the amount of carbohydrates listed so it is easy for me to follow how much he has had during the day.
At school, all of his medications, rescue medications for seizures and anything the staff
Here is an example of what we keep at school. His medications, rescue medications for seizures and anything the staff may need to administer at any time is labeled with his name and has a sticker of his picture on them. The nurse can visualize Max’s picture and with a double check quickly give the medication that is needed.
may need to administer at any time is labeledwith his name and has a sticker of his picture on them. The nurse can clearly see Max’s picture and with a double check quickly give the medication that is needed. Like every student the beginning of the year can be stressful physically and psychologically for our children. Max is going to bed early and his diet will be more closely monitored for next couple of weeks. There will be a lower amount of carbohydrates and I give him extra-probiotics and if it’s needed, I may restart some of his vitamins. Mid October we do a LGIT blood check up. Max has his own homework area in the home with a special balance chair. It helps with his ADHD, and helps him to keep a good back and knee posture while strengthening his abdominal muscles.
Max and I are wishing you a great school year! We want to have a lot of progress, stay healthy and happy!
A Big Thank you to all of the contributors that help bring you Angelman Today! Contributors: Ed Weeber, Ph.D Dr. Charles Williams Lisa Gleeson MA SpEd. Emilie Mullins Kathy Anderson
Marc Bissonnette Karen VanPuyenbroek Linda Rafert Yoakam Evelyn Dietrich Isabel Orellano De Chang
Angelman Today Supporters: All of the Angelman Foundations across the globe
Sleep Safe Beds - www.sleepsafebed.com Zipzicles - www.zipzicles.com Hatchbacks Footwear – www.hatchbacksfootwear.com MediPal – www.medipal.com Autumn McLeod – Health Coaching Linda Cundy – Author of ‘She Acts Very Different’.
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families. It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers. The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions, products or procedures that appear on this website or online magazine. All matters regarding your health should be supervised by a licensed health care physician. Copyright 2013 Angelman Today, LLC. All rights reserved worldwide.
Angel Lina’s Testimonial Lina’s Mom shares with us the success on LGIT and GFCF diet Lina and her family are from Germany this article features both languages. Our angel Lina (deletion class 2) will soon turn 4. For her first 3 years of life, she was able to develop well without epilepsy. Right around her third birthday, epilepsy started with first febrile seizures. We started the LGIT diet in November of 2012 as well as treatment with Frisium due to many myoclonic seizures and developmental stagnation. In addition, in April we went gluten free and reduced casein intakes significantly. Ever since, Lina is doing well and of her myoclonic seizures not much is noticeable. She has also had great developmental advancements; she walks more stable, eats almost by herself with the spoon, rides her bike, and is potty trained. She is healthier and appears to be more awake and alert. In addition to her special diet, Lina also receives the following supplements: Speak (vitamin E, fish oil), Aloe Vera, Manuka honey, magnesium, Bioastin and curcuma; all anti inflammatory substances. The EEG taken after 9 months was so surprising to our neurologist that he could not believe it. All epileptic potentials that had existed since Lina’s first year were gone. Also, the typical Angelman waves have adapted for the first time in her life; this also corresponds to her improved behavior. Our neurologist was very surprised and has never seen anything like it. Dr. Thibert indicated that this effect of LGIT happens to many Angels in combination with Clobazam. For us the diet is a wonderful way to significantly improve the quality of life for our daughter with little effort and to avoid the need of additional medication. We often travel as a family; even then, the diet is possible without problems. We suggest each family give it a try. -Family Dietrich from Germany
Unser Angel Lina (del klasse 2) wird nun bald 4 Jahre alt. 3 Jahre lang konnte sie sich gut ohne Epilepsie entwickeln. Pünktlich um den 3. Geburtstag meldete sich dann doch leider das Krampfleiden mit ersten febrilen Krämpfen. Wir begannen ab November 2012 mit der LGIT Diät, es erfolgte auch eine Einstellung mit Frisium aufgrund vieler Myoklonien und Entwicklungsstillstand. Im April starteten wir dann noch zusätzlich mit Glutenfrei und wenig Casein, seitdem geht es Lina richtig gut und von den Myoklonien ist nicht mehr viel zu merken. Auch hat sie einen riesen Entwicklungsschritt gemacht, sie läuft nun sicherer, isst fast allein mit dem Löffel, fährt Laufrad und ist sauber. Sie ist gesünder und wirkt munterer und aufmerksam. Lina bekommt ergänzend zu ihrer Ernährung weitere Zusätze: Speak (vite, fish-oil), Aloe vera, Manuka, Magnesium, Bioastin und Curcumin, alles entzündungshemmende Substanzen. Das EEG nach einem 3/4 Jahr war für unseren Neurologen so verblüffend, dass er seinen Augen nicht trauen konnte. Jegliche Epileptische Potentiale waren verschwunden, die schon seit Linas erstem Lebensjahr existierten. Auch haben sich die Angelman typischen Wellen an normal typische Wellen angepasst. Das erste Mal in ihrem Leben, dies korrespondiert auch mit Linas verbesserten Verhalten. Unser schulmedizinischer Neurologe war über die Wirkung sehr verblüfft, das hat er vorher noch nicht erlebt. Dr. thibert berichtete uns, dass dieser Effekt von LGIT bei vielen Angels auftritt in Verbindung mit Clobazam. Für uns ist die Diät ein sehr gutes Mittel, mit wenig Aufwand die Lebensqualität unserer Tochter erheblich zu verbessern und auf weitere Medikamente zu verzichten. Wir verreisen sehr oft in der Familie, selbst dann ist die Diät ohne Probleme umsetzbar. Wir können den Versuch jeder Familie empfehlen. -Familie Dietrich aus Deutschland
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