A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
See the complete list of topics.
Safety | School | Scientific Advisory Committee | Scientific Symposium | Scoliosis | Seizures and Seizure Medication | Sensory Integration | Shoes | Siblings | Sleep Challenges | Social Security and SSI | Special Needs Trust | Straws | Strollers| Support Resources | Surgical Procedures | Swimming
Safety
See Resources and select Special Needs Safety from the category drop down menu.
Angelman Family Contributions
Consider a durable wall mounted gate for the top of stairs where your child with Angelman syndrome plays and/or sleeps. This is especially important if your child has seizures. This continues to be a recommendation into teen/adult years.
Kelly
I couldn’t keep Kade in his seatbelt. I found this little piece of plastic heaven called The Buckle Boss. I have also had a French door installed in my kitchen. He can see in; we can see out; but it has a lock and a dead bolt on it for his safety. We use hotel latches for our entry doors.
Hollie
At one of the ASF Walks we were told that it’s a good idea to call the police station and let them know you have a child with special needs for their files. They now know that our daughter is a wander risk. Buy the Buckle Boss online to help keep your child in their car seat.
Jason, angel Chloe
Little hook and eye locks on doors to pantries, bathrooms and closets help keep little angels out of food, water, and toys. Just make sure that they are low enough for other siblings to get to those places.
Michelle
Using a baby monitor at night helps alert to seizures or getting sick from reflux.
Jo Lynn
To keep our angel out of all of the other bedrooms, we put the locks on the outside of all of our doors. This way he cannot get into anything dangerous.
Rene
Everything in our home is locked. We don’t have knickknacks around the house. Every door is locked, every cupboard is locked, and knobs are removed from the stove. The refrigerator is locked, and especially the bathroom is locked. Child locks were not strong enough to keep my angel out, so we had to use durable metal locks.
Stephanie, angel Jeremiah “JJ”
Keypad locks sold at hardware stores keep angels safe and out of trouble. There are ones available for regular indoor doors and deadbolts. We have installed them on our front and back doors. There are also locks on the pantry door, the garage door, the siblings’ doors, the furnace room and the office. It is a great investment. Use a permanent black marker to label the code directly on the lock for easy use by the family.
Jim and Deb, angel Justin
Due to decreased motor planning and spatial awareness, individuals with AS are likely to have significant safety awareness issues. Ensure that your child has a safe place to play and work by decreasing clutter (especially on the floor) and eliminate visual distractions in places that may be difficult to negotiate. Also consider safety devices, such as gates at the top of stairs and fences outside.
Kelly
Our guy is very mobile, and very curious, so we describe him as a large toddler. He is into everything all the time so we have to keep everything “baby-proofed” and we put away the breakables. He will not leave the electronics alone, and is forever digging into the cupboards and the refrigerator. So, we have locks on all the bedroom, refrigerator and garage doors. We also have a special enclosure on his bed to keep him from wandering at night, and we have alarms on all the exits so we know when he is trying to go outside without supervision.
Terri
I have an adult son who will not stop messing around with our big screen TV. So, I put a (office desk) plastic matte in front of the TV. I flipped it over with the “spikes” facing up. This works for any area that you do not want the child or adult to go near. This really works well.
Corbin, angel Tyler
We noticed that our granddaughter had a tendency to rock when she sat on a chair. We were afraid that she would fall off the chair. To prevent this from happening, I mounted a regular chair on a platform which was a piece of wood about 3/4 of an inch thick. I then mounted four iron pipe fittings into which I placed the chair legs. After that I poured roofing glue into the fittings. Once hardened, the legs are permanently glued to the fittings. With the chair mounted on the wooden platform this way, our granddaughter can’t rock because the chair is mounted on the platform and the weight of my granddaughter keeps the whole thing stable.
Patrick
I purchased a pill container and every week I put all of his medications in there for each day. Then, I don’t have to figure out or try to remember what he needs to take. It helps especially when you’re in a hurry.
Aina, angel Ra’Shawn, age 21
School (see E – Education)
Scientific Advisory Committee (SAC)
The ASF Scientific Advisory Committee (SAC) is responsible for overseeing research grants funded by the ASF. The ASF SAC is currently comprised of Angelman syndrome researchers and professionals from both academia and industry, clinicians who work with AS patients, and experts from related fields such as psychology, communication and education. SAC members donate their time and talent to review all research applications submitted to the ASF for funding, work with ASF staff to conduct an annual Scientific Symposium, and work with the ASF on research collaboration. The ASF and the ASF SAC play a strong role in networking researchers and funding research that pursues promising avenues of discovery. ASF SAC membership is evaluated and renewed on two-year terms, ensuring that a range of voices and opinions are expressed during the research funding process.
Scientific Symposia
See C-Conferences
The ASF Scientific Symposium also knows as the ASF Research Symposium is held every year. This two-day symposium is a chance for leading researchers, scientists and doctors to discuss the latest research activities in the world of AS. The first day is focused on a specific topic with 5-8 presenters. This day is a unique opportunity for researchers to present their latest findings of their unpublished work and compare notes with colleagues from around the globe. The second day includes short presentations on all areas of AS.
Scoliosis
See the American Journal of Medical Genetics paper.
Anna M. Larson Julianna E. Shinnick Elias A. Shaaya Elizabeth A. Thiele Ronald L. Thibert
First published: 26 November 2014 https://doi.org/10.1002/ajmg.a.36864 Cited by: 21
Scoliosis in Individuals with AS
- Affects 50% of individuals with an average age of diagnosis at 12 years old
- 24% of those diagnosed with scoliosis required surgery, an intervention disproportionately affecting men
Below is an article from Angelman UK
As children with Angelman syndrome age, progressive side-to-side curvature of the spine (scoliosis) may become apparent occurring in approximately 10% of children. The problem is more common in adulthood with about 40% of adult individuals with Angelman syndrome requiring braces or surgical correction. Scoliosis should be regularly monitored in all children and adults with the syndrome, particularly during periods of rapid growth (early childhood and adolescence).
Treatment Options:
The behavior of the curve may be monitored via repeated clinic visits and x-ray examinations at various times during development for worsening or progression of the scoliosis. Should the curve progress, or if it increases, treatment may be appropriate.
Bracing / Casting:
Bracing or casting programs may help delay or avoid the need for surgery. Bracing or casting congenital scoliosis (one present from birth) is rarely effective, but bracing or casting a small curve appearing during growth spurts curve may be helpful.
Bracing is prescribed depending on the degree of curvature determined by X-ray. The goal of bracing is to slow the progression of the curve, allowing the child to grow before a surgical procedure is done, as bracing alone rarely permanently corrects scoliosis.
Casting is usually used in cases of congenital scoliosis for children under the age of 3. It has been shown to either correct or to delay the progression of curvature in some cases, especially in young children and those with smaller curvatures.
Manipulation, physical therapy and/or exercise has not been shown to influence spinal curvature.
Patients treated with scoliosis casting.
Surgery:
Surgery is generally recommended if brace or cast treatment fails to keep the scoliosis from progressing, or if the curve pattern shows brace or cast treatments are unlikely to succeed.
The surgeon will stop the progression of a curve without adversely affecting future growth. Various growth-friendly surgeries allow the spine and lungs to grow while controlling spine and lung deformity.
See more information about scoliosis on the Scoliosis Association UK website.
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Seizures and Seizure Medication
Information from Facts About Angelman Syndrome written by Charles A. Williams, M.D; and Sarika U. Peters, Ph.D.
More than 90% of individuals with AS are reported to have seizures but this may be an overestimate because medical reports tend to dwell on the more severe cases. Less than 25% develop seizures before 12 months of age. Most have onset before 3 years, but occurrence in older children or in teenagers is not exceptional. The seizures can be of any type (i.e. major motor involving jerking of all extremities; absence type involving brief periods of lack of awareness), and may require multiple anticonvulsant medications. Seizures may be difficult to recognize or distinguish from the child’s usual tremulousness, hyperkinetic limb movements or attention deficits. The typical EEG is often more abnormal than expected from the clinical appearance, and it may suggest seizures when in fact there are none [36, 61, 62].
There is no agreement as to the optimal seizure medication although valproic acid (Depakote), topiramate (Topamax), lamotrigine (Lamictal), levetiracetam (Keppra), and clonazepam (Klonopin) are more commonly used in the North Amereica. Carbamazepine (Tegretol), ethosuximide (Zarontin), phenytoin (Dilantin), phenobarbital, and ACTH are less commonly used. Vigabatrin (Sabril), an inhibitor of GABA metabolism, should not be used. [63] Single medication use is preferred but seizure breakthrough is common. Some children with uncontrollable seizures have been placed on a ketogenic diet, and this may be helpful in some cases. Children with AS are at risk for medication over-‐‑treatment because their movement abnormalities or attention deficits can be mistaken for seizures and because EEG abnormalities can persist even when seizures are controlled.
Angelman Syndrome: Epilepsy and its Treatment
In 2007, the ASF Funded a research grant that enabled the largest survey ever to be conducted on AS regarding anticonvulsant drug use and their results. See the results reported from that survey.
Seizure Resources
See the Resources & Education section and select Seizures for a list of resources.
Angelman Family Contribution
I think there should be a topic listed for Shaking Angels. We have a Shaking Angel Group that has grown in 9 years to 315 members. It appears many of our loved Angels start these shaking episodes after puberty. Medications are hard to find to treat these episodes. Episodes do not show up as seizures on an EEG.
Mary Jo, mjkamp@cox.net, angel Katie, age 31, Del +
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Sensory Integration
Angelman Family Contribution
Believe in sensory integration therapy. It works! Find an expert!
Terry, angel Byron, age 35
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Shoes
Angelman Family Contributions: Shoes
After a lot of trial and error, we discovered the ikiki brand of shoes that fit nicely over our daughter’s (3yo, del+) AFOs and now SMOs. The one Velcro strap is nice (so you can get them on quickly!). The ikiki’s are also very lightweight, you are able to order them as singletons in different sizes, and there is an on/off switch for heel squeakers (for endless entertainment!).
AS Family Member
Our daughter is a “Houdini” when it comes to shoes. For years, the only thing that would work was lightweight high top wrestling shoes. When those became harder to find, we became desperate and tried Under Armor Kickit 2 Splatter mid tops. They are extremely lightweight, so she accepted them. However… she stills has “phases” when she pulls them off. It becomes a “fight or flight” situation and we believe she would break her ankle in order to succeed. Patience is the key!
Alice, angel Whitney, age 38, Del+ Class 1
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Siblings
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. The purpose of the Sibling Support Project is to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents’ and providers’ understanding of sibling issues.
Facebook Group for Adult Siblings: https://www.facebook.com/groups/902698506768244/
When I Realized My Older Sister is Different By: Christina Spaeth, Angelman syndrome sibling, 11-20-2014
When I was a kid, I didn’t want adventure. I wanted normalcy. There were so many times I wished, for my sister’s sake, she could be a normal big sister who could give me advice, date boys and share clothes with me. That’s not what I have. I have Emily.
Emily has a random mutation of a single gene — something minuscule changed her entire brain, resulting in Angelman syndrome, a rare neuro-genetic disorder that causes severe developmental delays, absence of speech, gait/movement/balance problems and in most cases, seizures. We’re lucky, however, because unlike the majority of cases, Emily has a mutation of the UBE3A gene, instead of the deletion.
She’s therefore more mildly affected than those with the deletion, who sometimes cannot walk. Emily learned to walk at the age of 3 and has never had seizures. Because the technology was not yet developed enough to detect her genetic mutation when she was young, she was not diagnosed until high school after extensive genetic testing at the University of Chicago. So before that, I had to use phrases like “severely cognitively disabled” in an attempt to explain my sister.
I remember the day I realized my sister was different. I was around 3. I’d gotten a splinter and ran inside to my mom. I sat down on the kitchen floor and waited for my mom to get tweezers and a Band-Aid. Emily, 6, sat down next to me and fussed for a Band-Aid. “I know, honey. You want one too,” my mom said, wrapping one around Emily’s finger, even though there was no need. As I sat there watching this, some connection sparked in my brain: “I’m growing up, and Emily never will.” That is one of my first memories.
Emily turned 23 this year. We have another brother who is five years older than her. It was a confusing limbo for me as a child, since I was physically younger than Emily but mentally older. Emily will always be about 3 years old cognitively. When I was a kid that was kind of fun since I always had a playmate. We would run around in the backyard (albeit, Emily kind of shuffled) and swing and play in the sandbox. I learned not to get upset when she knocked down my sandcastle and to stay away if she got angry. As my parents taught me, the rest of us have the ability to use words when we’re upset, but Emily doesn’t so she expresses it any way she can, generally by having a tantrum. The best thing to do was get out of her way when she was mad and let my parents handle it.
I didn’t know how to talk about my sister when I was young. One neighbor girl, when we were 5, asked, “Does your sister wear diapers?” I hated the snotty look on her face so I lied and said no. A few years later, at Chuck-E-Cheese for my eighth birthday, Emily and I were crawling around the tubes and two younger girls watched as she passed by. “She’s fat,” one said to her friend. I bit my tongue and shoved Emily forward. Even though she didn’t understand the words, I certainly did. In middle school, when a fellow classmate was making fun of individuals with disabilities, I kicked him in the shin.
All of this information, these anecdotes, these memories, have been buzzing around my head for months. I’ve been trying to organize my thoughts about Emily for a long time. How does she see the world? How does she see me? I’m her translator, her referential point in new situations, her protector, her teddy bear. I know her language of noises, pointing and signs as if I were bilingual. It’s not easy all the time. She has impressive tantrums, sometimes in public.
She’s like a clingy puppy when I’m home from college. And yes, she can be kind of gross, like a toddler would be. I’d rather not say the amount of times I’ve been sneezed on.
But you know what? Without her, I wouldn’t be who I am. I wouldn’t be as compassionate and patient towards people of all abilities. I wouldn’t have written about her in my college essays and in magazines. I wouldn’t be studying to be a speech-language pathologist.
Emily is always giving hugs and kisses. Yes, she has big temper tantrums, but she generally has an exceptionally happy demeanor. She has the biggest belly laugh you ever heard. She loves things with wheels, musicals, bowling, baseball, swimming, ice cream, family and friends. Her vision and hearing are sharp and her memory even more so. She never forgets a face or a route to get somewhere. She adores riding in the car and could do it for hours on end. She loves to cuddle. She likes to tease and play jokes on people. She writes “Em” on everything she owns. She squirrels away things in her many backpacks, stuffing them beyond belief. She enjoys shredding paper. She flaps her arms when she’s happy. She cries at sad music and laughs at slapstick comedy. She’s the most loving, forgiving person I know. That is what I have. I have Emily.
Angelman Family Contributions
Siblings of children with Angelman syndrome face unique challenges. Many siblings often offer their help. However, it is important for parents to encourage siblings to spend time with their peers and participate in extracurricular activities. Sibshops and peer support groups can be a fun and social way for siblings to deal with their feelings about AS brothers or sisters. Many siblings have reported feeling more independent and sensitive because of their angel brother or sister.
AS Family Member
Concerning having more children, the most common worry parents feel is that they won’t have enough time to spend with typical children because of the care required by their AS child. They also express concern about the future and leaving other siblings with too much responsibility after they are gone. However, one mother reported that having a second child was the best thing that ever happened because she appreciated every tiny milestone and was in awe of a typical developing child. Although each child and situation is different, many sibling or relative’s thoughts and feelings are similar. The absence of speech seems to be one of the biggest issues for children to understand and accept. The most important thing to keep in mind is that children are bound to experience negative thoughts and feelings towards their Angelman siblings at different times throughout their lives. The feelings are normal and should be respected and discussed. Dealing with feelings of anger, resentment and disappointment early on can help lay the groundwork for a strong and positive relationship between your children later in life. Children need to know it is okay to experience these feelings and you will be amazed at the response you get when you tell them that you have experienced these very same feelings, as well.
AS Family Member
My daughter Elena, age 23, is living at home with her father, mother and two of her three siblings. She is the second of four siblings. When her brother Daniel was born, she was seven years old. When we got Daniel home from the hospital, the baby was crying inconsolably. Elena took a piece of plastic that apparently she had hidden under the coach and put it over his crib in an effort to calm the crying baby. Elena was giving him his greatest treasure…her piece of plastic!! This was her first expression of love for her little brother.
Maria, angel Elena
We suggest including your angel in sibling sports activities. Justin is the flag bearer and equipment manager for the football team. He led the team onto the field for games and helped carry the equipment for practices. It’s been such an incredible experience. The boys on the team are from all over the city and are always very excited to see Justin. He is treated like a celebrity and loves all the attention. We now have a lot more people knowing Justin. He is accepted and there is a greater understanding of Angelman syndrome throughout the community. It’s a win-win situation for both our son and his peers.
Jim and Deb, angel Justin
Our older daughter said it best when she exclaimed, “There is no normal! Everyone is different and needs to be cherished.” She loves her little sister with all her might, but her little sis can still drive her crazy! I tell her that THAT is normal! Siblings can and will drive you crazy. That’s their mission in life, but they can also be your best friend!
Leah, angel Emily, Del +
Both of our angel’s siblings say he has teaching them to be patient and to value what really matters…not the material things. They also have said that having an angel as a sibling has helped the family to be more united.
Brisia, angel Mario
Our angel attended her older sister’s sports activities and essentially became a “mascot”. It taught our daughter’s friends invaluable lessons about inclusion and sensitivity toward others with special needs. It also greatly enhanced the life of our angel and she loved being part of all of the action!
Alice and Mark, angel Whitney, age 38, Del+ Class I
We used to feel like we weren’t able to do enough for Jennie’s older brother, Jim. However, he turned out just fine! My husband and I would take turns taking our typical child special places and made sure he had friends over and went to their houses. He was in lots of local recreational activities, too. I would also try to give him a special time every day. At a recent family birthday party, instead of running around with the other kids, Amanda, (my AS son, Devin’s cousin) brought a big pile of books downstairs and spent the next half an hour on the couch “reading” to Devin.
AS Family member
I had four teenagers in junior and senior high when Susan (AS) was in the seven to ten year-old age range. I think it all balanced out very well. Their problems at times were so challenging that we couldn’t get overly involved with Susan and her needs. At the same time, caring for her kept us from becoming over anxious about all those typical teens! I am pleased to report that our typical children seem to be well-adjusted young adults. They now joke about all the things they got away with because of Susan’s needs!
AS Family Member
Samantha (AS) has an older brother who is seven and a younger one who is almost three. We really didn’t think about having another child, it just happened. It has been the best thing for Sam. They all do a lot together and she really watches her younger sibling. The younger one has surpassed her developmentally and so now he is a good role model. They fight like cats and dogs sometimes, just like any siblings would. He has begun talking for Sam and is very protective of her. He is always saying, “Mom, Sam wants….” They love to wrestle and watch Sesame Street together and were even holding hands in the back seat of the car the other day. Her older brother also loves to wrestle with her and he is excited that she will be in his school next year. They do fight more because he wants more space and she loves to invade it!!! But, he is very protective of her. When he was little he responded to an explanation of why Sam couldn’t talk by saying that he knew what the problem was – Sam was talking, but nobody understood her because she was speaking French! For us, it can be hectic, but having other children allows us not to focus too much on Samantha. She does need a lot of care, but having other children allows us to focus on the more ordinary things in life. So, it can be a difficult decision but I think it is very beneficial to have other children.
AS Family Member
When Ashleigh (our older daughter and AS sibling) was six we enrolled her in the Big Brother/Big Sister program. It was the first time the local group had a child who wasn’t from a single parent family. I explained that I wanted a big sister for Ashleigh because I felt she could use one-on-one attention, and because I wanted her to have a “sibling” she could talk to and someone she could share a special bond. Her first Big Sister was a television news editor. Ashleigh was in her wedding! Her second Big Sister, who was a marriage and family counselor, spent many years with her and attended her high school graduation. It was so wonderful for Ashleigh. They went to the beach, the movies, rollerblading, shopping, etc.
Alice and Mark, angel Whitney, age 38, Del+ Class I
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Sleep Challenges
Angelman Family Contributions
Melatonin has been a life saver for our family. Esmae takes 3mg dissolvable a half hour before bedtime and it generally allows her to sleep approximately 10 hours each night.
Julie, julialouis@howardhanna.com, angel Esmae, age 5, UPD
When our daughter was about four months old, she kept aspirating liquids. We were able to get her scheduled for a supraglottoplasty – this is to help with her windpipe. The surgery was a huge success and the biggest surprise is now she can SLEEP THROUGH THE NIGHT!! Prior to this, we had HUGE sleep challenges, and then we got the surgery and there is a NIGHT AND DAY difference. She was a totally different kid. Cannot say enough about supraglottoplasty.
Alex, angel Rose, age 2, Del+
I do not know whether or not this behavior is common. But, my brother sleeps to the sound of other family members sleeping. So if he is restless, I pretend I am already asleep and I make a gentle snoring sound. If he was awake simply because he was restless, and not because of pains, this tip will make him sleep.
AS Family Member
Routine is essential for our Angelman child. It assists with normalizing his wake/sleep cycle and keeps his behaviors to a minimum if he knows what to expect as the day progresses.
Terri
A low dose of Clonidine better known as blood pressure medication. Clonidine was confirmed by my Angels Geneticist to have worked with other Angels. It helps to keep Angels asleep through the night.
AS Family Member
Establishing a routine for sleeping helped. We would all get into our own beds at the same time. Initially my son would get out of his bed and crawl around, but gradually he started staying in bed and sleeping through the night. In the initial phases twice under his pediatrician’s supervision we gave him low dose melatonin tablets for a 3 month duration and weaned him off. It supported the initiation of the sleep through the night behavior.
AS Family Member
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Social Security and SSI
Benefits: http://www.ssa.gov/pubs/EN-05-10026.pdf
Social Security Disability Benefits & SSI Disability Claims: http://www.disability-claims.net/
If you have questions, contact Dr. Eric Wright, ASF Family Resource team member, via the online form.
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Special Needs Trust
A special needs trust is a trust designed for beneficiaries who are disabled, either physically or mentally. It is written so the beneficiary can enjoy the use of property that is held in the trust for his or her benefit, while at the same time allowing the beneficiary to receive essential needs-based government benefits. There are administrative advantages of using a trust to hold and manage property intended for the benefit of the beneficiary if the beneficiary lacks the legal capacity to handle his or her own financial affairs.
In the United States, such trusts provide advantages in helping beneficiaries qualify for health care coverage under state Medicaid programs, and also for monthly cash payments under the Supplemental Security Income (SSI) program operated by the Social Security Administration.
See an article called 5 Steps to Starting a Special Needs Trust on Verywellfamily.com.
Angelman Family Contribution
Through a lawyer, we set up an irrevocable trust for our son. This is so we can provide funds for things he needs that Medicare and Medicaid will not pay for after our death.
Susan
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Straws
See also D- Drinking
Practice drinking from a straw using box drinks with a straw that the liquid can be gently squeezed up the straw working on them trying to suck the liquid up the straw themselves. Once they can drink from a straw practice using oral muscles by drinking thicken liquids from a straw (you can make your own smoothies using applesauce with juice, or yogurt with milk, or pudding with milk).
Debbie, Occupational Therapist, Rady Children’s Hospital, San Diego, CA
Strollers
See the Adaptive Mall website for strollers.
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Support Resources
See the Resources & Education section and select Support & Services for a list of resources.
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Surgical Procedures
Below is information from the 2009 document Facts About Angelman Syndrome, written by Charles A. Williams, M.D; Sarika U. Peters, Ph.D.
There are several literature reports of individuals with AS undergoing general anesthesia without any difficulties. Also, the experience reported by many parents on the web and from parent meetings is generally favorable regarding successful general anesthesia and other aspects of surgical intervention. Some scientific reports mention concern for those who have the deletion mechanism (present in 70% of those with AS) because these individuals also have a deletion of GABA receptor genes which are known to be targets of certain anesthetic agents such as benzodiazepines and halogenated ethers. However, the weight of experience thus far indicates that individuals with AS tolerate anesthetic agents well. Convalescence from surgical procedures also appears to occur relatively normally. For example, rather significant surgical interventions of scoliosis repair with rod replacement and bone grafting is not uncommon to be well tolerated in those with AS.
There have been recent reports of bradycardia in individuals with AS and the presumption has been that these rhythm problems were due to increased activity of the vagus nerve [71-‐‑73]. These reports are somewhat difficult to interpret because of the complexities associated with hospitalization such as multiple medication use and the variables of the surgical procedure. At this point, it seems unclear if individuals with AS have an increased risk for cardiac rhythm disturbances. Anesthesiologist should certainly be aware of these case reports however and of the possibility that agents that increase vagal tone may not be well tolerated in individuals with AS.
Angelman Family Contribution
Our daughter has had several surgeries. First, our hospital (UCSD) has always let her wear her pajamas or other familiar and comfortable clothes. She has never worn a gown and she would likely never tolerate it. We always have requested Zofran to prevent nausea and vomiting post-surgery. The last thing we want is for her to suffer from vomiting and be miserable after the procedure. Next, the hospital has always allowed one parent to put on scrubs and accompany her to the OR. The best method for us is to wheel her into the room in a chair and then lift her to the table. My husband usually is the one to go since he is stronger (physically and emotionally). He is there to help hold the mask until she falls asleep. He is face to face with her… and he always hopes he doesn’t inhale and collapse! 🙂
Alice, angel Whitney, age 38, Del+ Class 1
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Swimming
SoSecure Swim Brief is discreet unisex swimming undergarment for adults and teens made by Discovery Trekking Outfitters.
Angelman Family Contributions
Our daughter loves aquatic barbells! She loves holding them while she walks around the pool independently- with our supervision!
Alice, angel Whitney, age 38, Del+ Class 1
