Thursday, March 27, 2014

Webinar #1

Dear readers,

I guess I found my true calling...

I participated in my first webinar last monh and it was truly inspiring. Coming together 
with other moms of kids with Congenital DM was a real source of elation and excitement. I was inspired to share what I have learned along the way, the ups and downs of caring for a child who has a terrible disease, but mainly sharing the knowledge of what has worked, what is working and the hope of one day finding a cure.
At the end of the webinar that lasted an hour, we answered a few questions from our listeners.
We shared some laughs about potty training, and how to change diapers in the trunk of a car, etc. One listener mentioned how amazed he was to hear that we have kept our sense of humor.
What else is there?
When facing such challenges what are the options? Sit down and cry or get up, grab the demon and run away with it.
Sharing is the hard-earned prize of the permanent caregiver. You get to share the nuggets of gold collected along the way. You get to inspire people to fight the fight, to become advocates for their child, to never give up hope, to cry when needed, to not beat yourself down when the battle gets tough, to never take no for an answer, and most importantly to learn that it is ok to ask for help, and to be kind to yourself.
"Permanent caregiver", now that is a hard life mask, but at the end of the day, it is probably the most rewarding mask I have ever worn.
I do feel frustrated, angry, nervous, anxious, but I have managed to maintain my sense of humor, my energy, my feistiness.

So after webinar, what is next? Well, the Myotonic Dystrophy Foundation is holding its annual conference (September 2014) in Washington DC, and I have been asked to be a panelist and share what I know about horse therapy and therapeutic riding and how it impacts our life. I am so honored and humbled that they would ask me to come and share what I have learned along the way.
How the Horse has become a special part of our life, how the magical bond Zoé shares with the horses is like no other. How it opens up people's worlds, how when Zoé gets all out of sorts at school, the minute she is on a horse, she gets to calm down, to focus. The strain on the body is alleviated so that she gets to concentrate on other tasks at hand.
When she is on a horse, she doesn't know that she is in therapy, she gets to sing while on the trail, to spot deer in the hills overlooking the barn, she gets to work on puzzles and fine motor skills and loves it. She shares a special bond on Starlight (Her favorite horse) as well as physical and emotional support.

You can see the promotional video about Xenophon on Vimeo: Xenophon Orinda Promotional video (with a cameo appearance!!)

Updates on most recent activities and upcoming appointments:

- Shriners Hospital: Zoé got casted so we get her new custom-made braces in 3 weeks.
Rehabilitation Clinic: Doctor M. told me he was impressed at the progress, how independent Zoé has become.
-School: Zoé is making progress, but what is keeping her back is focus. We need to address this issue, one more hurdle on the road.
-Zoé took part in the school revue and sang with her peers in front of a huge audience, three days in a row. (Quite taxing emotionally and physically)
-We are taking Zoé to Salt Lake City for a congenital DM research study (more on that as soon as I have the date)
-Appointment at Shriners in May to meet with Doctor Davids, the orthopedist who is going to "read" the last body motion analysis and tell us how Zoé is doing.
- registered Zoé for Communication Works, Group Therapy, but we are on a waiting list.
- Zoé will be seen at The Mind Institute in Sacramento in the coming weeks as well. 
-We are adding quite a bit of mileage, but after all these appointments in Sacramento Zoé and I share fun rides at Funderland. It has become our tradition !
 Well voilà for now, see you soon on the blog.

Below are the notes we collected for the webinar, regarding the tips we want to share with parents struggling through the journey on which we have all embarked (Though, I wish it were a cruise on the Nile). Rather than just listing the challenges we are offering solutions, or at least some strategies that have helped some of us.


Number 1: take care of the caregiver
  • You need to put on your own lifemask first
  • You can’t do everything - know when to ask for help and when to say no
  • Therapy and antidepressants can be immensely helpful

Then: caring for children with congential DM


Diet / Nutrition
  • Balanced diet with a lot of protein, whole grains, fruit and vegetables (If your kids don’t like vegetables, consider making smoothies and mix in things like Kale and Spinach. They will never know. It’s also a great way to mix in laxatives or other bowel stimulants without them knowing (Lisa))
  • Lots of water (if difficult try diluting apple juice or milk.  Try soups)
  • Good healthy snacks: fruit, healthy smoothies, popcorn, nuts
(we keep bowl full of apples, cucumbers in refrig)
  • Sugar and saturated fat in moderation (my boys get sick with too much)- Jack won’t even eat it.  
  • Avoid heavily processed foods and high fructose corn syrup
If child has decreased appetite from taking focus medicine (ie Ritalin) during day try:
  • Big breakfast before first dose- juice in AM with nuts and cheese, then a “to-go” snack on the way to school.  
(eggs with cheese, sausages, pancakes, oatmeal with ground nuts, Greek yogurt (Lisa))
  • Big after school snack (PB&J, smoothies and popcorn)
  • Big dinner (reward with dessert if they finish everything)
  • If hungry before bed, offer late snack (banana is easy)
  • It was suggested to me by our behavior specialist that I should give Kayla fewer snacks and much bigger meals. She doesn’t always want to eat and I’m pretty sure it’s because of her focus meds. The theory is that if she’s eating too many snacks, she isn’t hungry at mealtime. The best way to lose weight for any of us is to eat every few hours. I’ve found Kayla eating more during meals now that I’ve reduced her snacks throughout the day. (Lisa)

Choking and Eating Precautions
  • Cut food (especially meats) into small pieces
  • Reminder to take small bites
  • Reminder to swallow before taking another bite
  • Watch for pocketing of food in cheeks. This can cause a choking hazard at a time long after a meal and can catch you off guard. (Lisa)

Medications / Vitamins / Supplements
  • Vitamins and homeopathic supplements - lots of options (these are our thoughts)
Can get expensive and time consuming - but can be useful
Suggest basic: daily vitamin and maybe fish oil
And maybe target challenge areas: GI, immune, resp. health, heart
(products I like listed at end - again just things I like, (Co-Q10 has been shown to help the heart in muscular dystrophy. (Lisa)) Also, we might want to add something here about Premier Cleanse since this is the meds area. (Lisa)
  • Mexiletine (we’ve used it for 5+ years now and think it helps relieve myotonia - especially helps with speech and maybe GI)
  • Ritalin (or similar products) to help with ADD and focus especially at school (SARAH - We use Focalin- appetite not really impacted) (Kayla takes Concerta for focus and it seems to work well. It’s a time release so she gets it throughout the day. (Lisa))
Challenge can be appetite suppression (some affected others not)
A friend is trying Strattera at night (ok sleepy and appetite better)

  • Consistent sleep routine is important (8-10 hours ideal)
Our boys go to bed by 8 most nights - and they are 14 and 15!
  • Moderation of course - but keep in mind it takes kids longer to recover energy
Our boys would look completely wiped out when tired
When they were little we bribed them to have naps which really helped
  • Some kids like to get “cozy” before bed - wrap blankets like burrito, rolling OT - roll up and down childs body with pillow before bed.  Settling.
  • If diagnosed with sleep apnea… and unable to tolerate BiPap machines
Try raising the heads of their beds to 30* angle (with wedge or pillows)
  • If your kids are restless at night, try giving them melatonin to get to sleep. It’s done wonders for Kayla (Lisa)

Respiratory health
  • Flu shot every year, pneumococcal (pneumonia) vaccine every 5 years
  • Good supplements for immunity during flu season (I like Wellness)
  • If big cough develops, palm cup manual percussors can help
(simple instructions - ask your pulmonologist)
  • If more serious respiratory issues are present, considering getting a chest percussion vest which will do mechanical percussion and it’s very effective in maintaining good respiratory health. (The Vest) (Lisa)
  • Supplement: Premier Research Labs, PneumoVen (we are just starting)

Gastrointestinal challenges
  • Don’t push (or over punish) the potty training
Consider pelvic floor therapy to help get “the feeling” of when to go
Consider biofeedback to help understand which muscles to use when
Star charts are always worth a shot!
  • Recognize/appreciate diapers may be a bigger part of your life than planned
We think Huggies should reward their best customers!
  • Meet with GI to understand issue
Often issue is constipation with leakage - encopresis
Careful not to compound constipation with Imodium
  • Lots of options to try to relieve constipation:
Mineral oil, Miralax, Exlax (chocolate flavor), prunes
Supplement: Premier Research Labs, Premier Cleanse
  • To handle leakage (esp at school) try using sanitary napkin
Child won’t have to change all their clothes so often
  • Abdominal pain (often associated with constipation)
Try massaging abdomen like kneading bread, to sooth
Or let child roll belly on peanut ball to alleviate pain
  • We use a special potty foot rest for Kayla which she uses to help get her body into a more natural position to eliminate. It’s worked really well. (Lisa)
Simple but little kids especially need reminder to use bathroom before bed and first thing in the morning and within 15-20 minutes after every meal. If you aren’t have any success start with toileting every hour. Set a timer and alarm to stay on track. (Lisa)

  • Recommend EKG each year, Echocardiogram and Holter Monitor every 3
  • Supplement: CoQ10 has been suggested (Sarah)
  • Annual check ups (before school nurse calls to tell you they need glasses!)
  • Vision therapy - some find it useful to train eyes to track better We have also used a patching program where you patch the stronger eye for an hour a day and it helps to strengthen the weaker eye with strabismus (Lisa)

  • Consider visit with orthopedic specialist every 2 years for assessment to check spine, legs and anticipate challenges (and solutions!) (Erica)
  • Consider body motion analysis assessment every 2 years to see how the gait improves, what muscles are fired, etc. (Sarah)
  • Appointments with PT and home exercises help build core maintain flexibility
Core strength helps a lot with other challenges
Keeping achilles stretched is often ongoing project
Get exercises for home
  • Work with PT and prosthetist to determine best foot and ankles supports
(lots of options and different opinions)
- Orthotics - good to have in all shoes fo rmore support
- Ankle foot orthotics (AFO) - taller profile for foot and ankle support
- Supra Malleolar Orthosis (SMO) - lower profile for foot support
- Blue Rocker carbon composite - helps with toe lift
(if appropriate, easier to disguise for self conscious teenagers)
  • Make life easier whenever possible!
Great brand of shoes (with velcro): Tsukinoshi  (Kristen)
Elastic shoelace replacements - makes kids more independent (Erica)
Long shoe horn can help get AFOs on
Challenge keeping calves and achilles stretched
  • AFOs for stretching at night (Erica)
  • Pilates stretching board - stretch achilles (in front of TV or video games for 20 min/day) (Erica)
  • Serial casting to stretch - tough sleeping but enables child to get off toes and use AFOs better (Kristen)
  • There are often good surgical options
Tendon transfer to help lift toes (Erica)
Operate on plantar fascia to release tightness (Sarah)
Muscle pain
  • Back and neck pain - try heating pad on low while resting on bed
  • Stiff calves or muscles - try massaging with yoga rolling pin or peanut ball


Preschool age
  • Children with special needs are eligible Early Intervention (age 3-5)
  • To identify support services in your area, google you state + Department of Developmental Disabilities or school district
(I think we shouldn’t include these California examples… let’s discuss)
- California specific ex (Sarah) - regional centers, family resource networks
- California Childrens Services offer therapies (PT, OT, speech) for pre-school
- CCS monitor child until 21 with annual assessments, can loan walkers, wheelchairs
- Directory of CA regional centers:
  • Make sure you child is evaluated for an IEP (age 3 onward)  Students with Myotonic Dystrophy should in most cases be eligible for special education support.

Establish a “team” to support your child (parents, teachers, therapists+)
  • Team meeting at start of every year  - invite everyone who works with your child
  • Keep lines of communication open - provide list of team’s contact information
  • Make a resume for your child and share with team (credit Jacinda Sampson)
Include information about child’s family, interests, hobbies, medical information (include pages from like overview, parts of body, anesthetic guidelines)
  • Consider requesting weekly update email from teachers and ask what you can do at home to supplement or work on.
  • Consider putting ‘communication notebook’ in backpack so that any ideas, comments or questions can be addressed.
  • If GI issues are a concern, ask that every toileting event be noted down with the success rate with urine and bowel movements. I have a great log if you want a sample. (Lisa)

Individualized Education Program (IEP)
  • Definition: An IEP is a truly individualized document which creates an opportunity for teachers, parents, school administrators and students to work together to improve educational results for children with disabilities.  The IEP guides the delivery of special education supports and services for the student with a disability (ironically, this is the golden ticket!)
  • Invite all professionals who work with child (your “team”) to annual IEPs
  • Understand (and take advantage of appropriate) services available at school
PT, OT, speech and language, counseling, social support, adaptive PE
  • Explore option of 1-to-1 aide (eligibility often with ‘orthopedic impairment’)
  • Review classroom placements (pull out vs push in)
  • Understand plans for modification vs accommodation (ask to have a reduced number of problems work to allow your child to keep up. It should be the same work as the rest of the class, just a reduction in the amount of work. For example, if the class has 25 spelling words, ask that your child only have 15. This must be written into the IEP. This is an accommodation, not a modification. It’s important to try and not modify, just accommodate. (Lisa)
  • Be cooperative but know how/where to get support if you run into challenges,
ie Family Resource Network or local agencies supporting parents of special needs kids.  In N California Matrix.
  • Always audio record your meetings. You must give a min. of 24 hour notice to school so they can tape the meeting as well (Lisa)
  • If child struggles with behaviors, ask for a behavior assessment and put a behavior support plan (BSP) in place. Make sure all aides are trained in the behavior protocols. (Lisa)


  • Bouncy seats or chair wedge - for classroom
  • Slant boards - for classroom and homework
  • Fidget toys - ie chewlery
Also I take little bag of “guys” everywhere to entertain/distract (out for dinner)
  • Wheelchair for long distances (can be ordered for flights)
  • Handicap placard (great to minimize walking)
  • Electric toothbrush
  • Peanut ball - for massaging abdomen when stomach cramps
  • Yoga rolling pin - massage calves when stiff
  • Lots of good apps for ipad (good link:


Take advantage of any services offered in schools and/or consider private therapy
  • Early Intervention (pre age 3)
  • Physical therapy
  • Occupational therapy
  • Speech and language, oral motor
  • Counseling or social groups
  • 1-to-1 aide (eligibility often with ‘orthopedic impairment’)  Jack Fitz and Ben K have had one for several years- makes all the difference.  Orthopedic impairment is the right primary eligibility for our kids. It gives them access to additional funding from the government.
  • APE (Adaptive PE) as well as PE (yes)

Some other therapy options:
  • GI biofeedback - can be helpful
  • Vision therapy - waste of time and money for some
  • Psychological counseling
  • Therapy for anxiety - we did Cognitive Behavioral Therapy that helped
  • Hippotherapy - PT on horseback - fun and theraputic
  • OT: sensory motor gym, sensory integration listening program
  • Water therapy - with rx from doctor insurance may help cover cost
  • Music therapy - great for motor control and speech (Lisa)


  • Some kids with DM tend to have autistic like behavior: obsessions, odd behaviors, lack of social skills (reading cues, social pragmatism, understanding boundaries)
  • Facial configuration of a child that never smiles (due to low muscle tone) can undermine relationships
  • Siblings without MD are so good to have as they model and in my case, with twins, I think Jack and parents were able to maintain a healthy perspective.  I am noticing as they grow that it is harder for both as the “differences” show themselves.  Thinking the “special needs” sibling gets more attention or special treatment.  It is important that both kids have things that are theirs- in sports or clubs and that parents and siblings support each child’s endeavors.

Some strategies that can help:
  • Consider communication groups that enable kids to interact and learn social skills (often developed for autistic kids but great for ours too)
  • Play therapy (Sarah)
  • Social Thinking groups (Erica)
  • Behavioralist clinic (determined Zoe has PDD-NOS)  (Sarah)
  • Behavior therapy - Group / individual / summer camps
(again used with kids on Autism spectrum)  (Kristen)
  • Work with 4 zones of regulation - teaching child to self regulate emotions (Sarah)

Bowling - great with friends or birthday parties
(check for Miracle League for people with special needs)
Swimming - excellent exercise and fun
Look for Challenger Leagues or sports programs for kids with special needs
Disabled ski programs - amazing (we recommend snowboarding)
Ice skating - rinks can usually accommodate kids with special needs.
MDA Camp (each kid has own counselor and they can go until they are 18) Also, if they can be paired with another child who has DM, it helps with the social aspect of camp. Kayla and Kali Warford bunk together and have very similar interests and medical needs so the counselors are able to give them the same kind of attention and experiences. They have had the same counselors two years in a row which has been great. They also have a cabin that has a bathroom in the room. That makes a huge difference since the GI system can be so tricky in this disease (Lisa)

(Jeremy and Conor this we should add something like this at end...
What you really need to deal with this disease is family and friends to support you.

(we’ve had great success with this for couple years - others too)

Respiratory supplement:
(we are just starting this)

Heart supplement:

Immune booster:

Respiratory health - palm cup precussors

Elastic shoelaces:

AFO options:
(I’m going to send more photos)


Chair wedge

Fidget toys - chewelry

Great educational iPad apps - might be worth copy of screen:

Still to come:
Example of child resume and MDF pages to provide to school?
Information to provide to doctors and therapists
Photos of boys AFOs, night AFOs and stretching board



We asked for APE (Adaptive PE) as well as PE.
At our annual IEPs we invite all the professionals that work with Zoé (From her OT, to her Horse therapist).
To stay in the loop of what goes on regarding daily activities, we asked the special Ed coordinator to send us a weekly email about what happened in the classroom and what we can do at home to supplement or work on. It is a great way to stay connected.
In the backpack, it is a good idea to put a “communication notebook” that goes back and forth from school to house so that any ideas, questions, comments can be addressed.
Agencies such as Family Resource Network are great at helping advocate for IEPs.

We also work with the 4 zones of self-regulation. Teaching our daughter to self regulate her emotions. (I can detail what those are, if need be).
Socialization was tough so we did play therapy, which didn’t really work. Facial configuration of a child that never smiles (Because unable due to low muscle tone) undermines lack of relationships.
Some kids with DM tend to have autistic like behavior: obsessions, odd behaviors, lack of social skills (Reading cues,  social pragmatics, understanding boundaries, etc.)
We took her to a behaviorist clinic that determined that she has PDD-NOS
(you are on the spectrum, but don’t meet the criteria to be fully autistic.)
Communication groups can help to enable kids to interact and learn social skills.
Social Thinking groups - Anna Vagin in Marin

We went straight to the Regional Center.
CCS (California Children Services) offers therapies such as PT, OT. Once the school district offers services they drop theirs but they monitor your child till he turns 21, with annual assessments. (I don’t find these clinics that valuable) However, they can loan walkers, wheelchairs. Our daughter started walking with a walker that they lent us.
We do a body motion analysis assessment every 2 years to see how the gait improves, what muscles are fired, etc.