Saturday, May 9, 2015

Introducing the International Sacral Agenesis Caudal Regression Association

I haven't blogged in quite a while, but in the meantime, the International Sacral Agenesis Caudal Regression Association (iSACRA) has been founded. I'm proud to say that I am a founding board member of iSACRA and helped get it started along with several wonderful, very dedicated people.

On June 6, we will be celebrating our second anniversary. Our Facebook group now has almost 650 members! And next week we are having our first really big fundraiser, a 5K in Virginia! I think there are exciting things ahead for iSACRA, and I look forward to continuing to get to know the members.

Tuesday, March 22, 2011

Great New Site on Caudal Regression Syndrome

Jessica, who has CRS, recently started her own site with information about CRS. It is a great site with lots of first-hand helpful information. She has a goal of forming an organization on CRS as well. Check out her site at Caudal Regression Syndrome Association.

I especially like her Recommended Articles, which include an article for parents that would really be helpful early on as well as articles on walking for kids with CRS, how to handle staring, having a support system, etc.

She also has information on sports, wheelchairs and other equipment, and how to meet other people with CRS. All around a very helpful and great site!

Wednesday, September 1, 2010

TLC Program on Woman with Caudal Regression

TLC recently featured an hour-long show on Joanne Fluke, who has caudal regression syndrome and participates in ballroom dancing. Here are some links.

A blogger at FWD (Females with Disabilities) responds to the TLC program and to other media coverage of Joanne.

One of the sensationalist-type stories like the ones FWD responds to above: story in the UK's Mirror

To see Joanne dancing firsthand, see this Groovability video.

Friday, August 13, 2010

Serial Casting Results

The serial casting went really well! His feet are a lot flatter, and his right foot, which was going in, is straighter. Also, he is not getting the red spots on his feet that he was getting from his braces because they fit him correctly again! It is amazing that we could do this in just 3 weeks. Here is a before and after photo. I never take them from the same angles, ughhg, but these two are really close for comparison.

Monday, August 2, 2010

Serial Casting: Weeks 1 and 2

Jordan is going through another few weeks of serial casting. His feet are just not flat anymore, and he is standing on his toes. Also, his left foot is really rotating in. Hopefully the serial casting will do something to put off more surgery and will keep him doing as well as he's doing.

Here are his feet before the first casts were put on. Notice how he is standing on his toes. He can't flatten them. It's hard to flatten them all the way if you push on them, too.

He is going to have these casts on for 2 weeks. This Wednesday will be 2 weeks, actually, so I'm eager to see what his feet look like so far. The PT thinks it will take just a few casts, and they will definitely be done before school starts. I am hoping we will have at least a week or 2 at the end of the summer for more swimming when he is out of the casts!

This shows how he just goes about doing everything he usually does while wearing the casts.

He actually got some wood chips in his casts that day at the playground. I hope I was able to get them all out and that when they cut off the casts, a whole lot of wood chips don't fall out!

I'll post more photos after he gets the casts changed this week.

Tuesday, September 1, 2009

504 Plan for a Child with Caudal Regression Syndrome

When looking for info on preparing for my son's 504 Plan meeting, it was hard finding anything specific to caudal regression, of course, but also hard just finding example 504 Plans at all, especially for kids with orthopedic impairments. I thought I'd share the plan that was finally finalized as well as some links that were helpful in preparing it. I also used a template for parents, called the Parent Input Sheet, that was helpful. They used my info to put onto the plan, although they greatly shortened it.

Parent Input Sheet
1. What do you feel is your child’s disabling condition that necessitates that he or she have a 504 plan?

2. How does it impact his or her daily life activities?

3. How does it impact his or her educational program?

4. What necessary accommodations do you believe your child needs in order to be successful in school?

Sample 504 Plan for Caudal Regression Syndrome
Student Name:
Date of Agreement:

Reason for Service
Student is transitioning into a school-aged program from preschool. His primary disability is Orthopedic Impairment. He has a medical diagnosis of caudal regression syndrome/sacral agenesis, which has affected his pelvis, legs, bladder and bowel function. In addition, Student has a hearing loss in his right ear. He cannot sit pretzel style and uses a cushion when sitting. Student ambulates with a rolling walker or crutches.

Student’s kidneys are low in the front of his body, not up in the back like in most people. Therefore, his kidneys are unprotected by his ribs and could be damaged if he has a blow to the abdomen. He plays normally with other kids but must avoid contact sports (being too rough, tackling, etc.).

Student also has some fused vertebrae in his neck, so it is like he doesn’t have some of the “padding” between the bones in his neck. He should not do any activities that will put stress on his neck, such as “heading” a ball or doing somersaults.

Because the nerves to Student’s bowel and bladder do not function reliably, he is not fully potty trained yet, and the urologist does not foresee continence for Student without surgical intervention (which would take place when Student is around 8 to 10 years old).

Latex Precautions
Because of his neural tube disorder and frequent surgeries, Student has a high risk of developing an allergy to latex and natural rubber and must avoid being in the same room with latex gloves, Band-Aids, balls, balloons, erasers, and so on.

Medical Accommodations
  • Bathroom breaks: Student will have regular bathroom breaks spaced at preset intervals with times to be determined (especially after eating and after physical activity).
  • He will go to the nurse’s room for assistance.
  • He will have extra changes of clothes and Pull-Ups kept at school at all times kept in the nurse’s office.
  • Student will be allowed to take extra bathroom breaks as needed.
  • Student will not be exposed to or near latex, including gloves, Band-Aids, balls , balloons, erasers, and so on.

All adults working with Student will be notified of his latex sensitivity.

Parent and School Nurse will meet once the building Master Schedule has been determined to best support Student at the beginning of the school year, for his medical services.

Recommendations: Proposed Physical Therapy for Student is 90 minutes/week. Services will be a combination of push-in and pull-out with ongoing consultation between classroom teacher and staff. Fall reassessment will occur for PT services to be adjusted for the 2009-2010 school setting. The preschool school transition evaluation is attached.

School Accommodations

  • Use of a walker or forearm crutches to ambulate the school environment
  • Seat cushion provided by parents
  • Seat cushion when attending performances, assemblies or prolonged periods of time (student chair when needed)
  • Ongoing written communication between parents and teacher
  • Preferential seating for hearing – teacher to face Student’s left side when speaking to him or delivering instructions
  • Wheelchair provided by parents for field trips as needed
  • Parents will provide written permission for Student to be lifted on and off a bus for any District provided transportation
  • Avoid Contact Sports and any activities that put stress on his neck ex. “heading” balls and doing somersaults.

Transportation: Parents will provide transportation to and from school.

Note: Student’s full Preschool evaluation, Physical Therapy evaluation, Parent Input document, and article on Caudal Regression Syndrome are attached to this document.

Please indicate agreement to the above plan by signing the appropriate line below.

_____________________________________ ____________________
Parent(s) signature Date

_____________________________________ ____________________
Parent (s) signature Date

_____________________________________ ____________________
Principal’s signature Date

Additional Info on 504 Plans
Here are some helpful links on 504 Plans:

What is a 504 Plan
The Parental Advocate
Section 504 Information
Accommodations for Kids with Mobility Impairments
504 Plan

Universal Design
We debated with them back and forth about putting something about classroom accessibility into the plan. However, they kept coming back to their point that the classroom has to be accessible for ALL students, not just our son, so it's not an accommodation. When researching this, I did find some good links on universal design, though, which may be helpful if you do want to insist on something about classroom accessibility in the plan. These links include:

Applications of Universal Design
ADA Accessibility Guidelines
A Checklist for Designing Spaces That Are Welcoming, Accessible, and Usable
The Accessible Classroom

Monday, July 13, 2009

Medical Record Keeping and "New Symptom Log"

Keeping track of your child's medical records is a huge undertaking if your child sees a lot of specialists. I try to get copies of his records every 6 months. I write to the hospital and ask for certain dates of records. They charge you if it's over a certain page count, so it's good to keep up with them.

I try to keep the records filed by specialty rather than throwing them in a big cardboard box, which, admittedly, is where they've gone recently. I have an expanding file holder so I can put the papers in where they belong. Some people like to put their records in a binder, but I find that takes an extra step with punching the holes! Also, I'd need to have an entire binder on ortho, another one on uro, etc--they wouldn't all fit into one binder.

A new thing I've recently thought of is a "new symptom log." I started an Excel spreadsheet with columns: Date, Symptom, and Notes. I might add another column called Resolution or something like that. But this is really nice for keeping track of a new sign or symptom your child has.

My son recently started moving his neck in a strange way to the side, jerking it back and forth. He says his neck is "stiff." I opened the log, thinking this was the first time he'd complained of a stiff neck. But then I saw that there was an entry from a month before that he complained about a stiff neck after his PT class! I never would have remembered that, especially not the specific date it first showed up.

This log does make me feel like an obsessive mommy, but with the amount of strange things he has had--everything from tibial torsion to a lump on his rear end that turned out to be bursitis to a finger that stayed "stuck" that was diagnosed as a trigger finger--I feel like this symptom log is something good to have to keep track of the strange small things that might turn into something big but usually just happen to scare me half to death!

If you have any medical record-keeping ideas, post a comment and let me know!