School Days with Ehlers Danlos Syndrome - Got a 504?

One of the first steps in getting safe procedures in place at the schools is to work with the appropriate school team to ensure a 504 Health Plan is in place. You can bring any specialized documentation from your Doctor to the school for use in creating this plan.
If you don't have it already, print a copy of "An Educator's Guide: Meeting the Needs of the Ehlers Danlos Child" by the EDNF group, and take a copy to the school.
What is a 504 plan?
Taken from WrightsLaw, at this link, a 504 is defined as "...a civil rights law that prohibits discrimination against individuals with disabilities. Section 504 ensures that the child with a disability has equal access to an education. The child may receive accommodations and modifications."

Because the rules and legal process that the schools are required to follow can be very complicated to a parent who is unfamiliar with the terminology or the protocol, I recommend familiarizing yourself with Advocacy Guidelines here, and general basics of IDEA, 504 and IEP on Wrights Law, here. 

It is essential to have the legally binding documents that are relevant to your unique needs in order for the school to have access to the resources they may require to accommodate the individual situation. While there will be instances where an EDS child requires an IEP, most children will be directed the route of a 504 plan.  If disability and resulting accommodations are the only goal, the 504 plan is designed to assist. If there is an academic issue or other situation present that will require an IEP, the 504 can be worked into the IEP. 

While some schools will be very knowledgeable and accommodating of how to utilize a 504 plan for your Ehlers Danlos child, others will not have the knowledge and some schools have even given false information to parents. I suspect that this comes from lack of understanding of EDS and lack of understanding of the federal guidelines of 504 plan. Your child's teacher is not likely to be the person you need to talk to about this, so the first step is tracking down the person who represents and reviews cases. Talking with your school principal is a good place to start.

I have found that going into a school with all the specific recommendations, in writing, from the Doctor to be extremely useful. The school was unsure what to do without that information. For example, my daughter is medically excused from PE classes, unless adaptive PE can be provided for her (which, in our school, it cannot). Special accommodations can be implemented into the school classrooms or grounds, such as a wheel chair access ramp if needed. Have the OT/PT/Doctor write out what adaptive devices are needed, make copies, and take this to your school team so that they can understand what steps they will need to take. 

Exercise patience as it will take time for the school to get through their process of meetings to facilitate the plan. And keep in regular contact with your team lead and the school nurse to discuss what is working, and what isn't working. Be flexible with items that are not necessary, and be assertive with doctor advised modifications that are required. You are allowed legal council to attend meetings and help you, if you feel help is needed. We have had great success in working with our medical team and the school team, however, our daughter still gets injured by accident in school.  It is not a perfect system, but it is one we are currently all willing to work with. Under different circumstances, homeschooling may be a better option, but we are not there just yet.

Our school also provides time with an occupational therapist, though it is extremely limited.  I have not found that these sessions truly do anything to help my daughter. Instead, I look at the time with the OT as a good bridge between the school staff and the medical team. The OT / PT they assign at the school are in contact with our private OT/PT and they pass along the instructed guidance and modifications to try. They assess if those modifications are working, and they advise if changes are required.

Going to meetings for creation of these documents can be very stressful, which is why I stress the importance of educating yourself on the process, the terminology, and your legal rights as a parent. WrightsLaw is the best resource I have found for this information. If you have a better resource, please share.

We have a great school here, and I am fortunate to have so many people looking out for my daughter. Even still, the IEP/504 plan she has is absolute key to keep her safety a priority and to enable the school to modify resources as required. There are many specifics of this that I can go into, but I will save those topics for other postings.  Today, I just want to stress that the federal government program is available for your safety and use, and I encourage you to utilize it, if you fit the need for the program.

DonJoy Shoulder Cradle for night time

First, we laugh when we see this photo because it is not entirely a restful sleep when your arms stick straight up in the air.  That is a problem in and of itself, but the shoulders dislocating every day and night were a worse problem.  When the shoulder instability is at it's very worst, we add this Donjoy Shoulder Cradle to one arm at night time, and we use the Donjoy Ultra Sling (shown here) This combination has helped her out tremendously. We don't use the bolster underneath, and the other sling has straps going across the front, so it's all a bit ridiculous looking, but this combination helps her to stabilize long enough for that constant instability to tone up. It took weeks of doing this every night, and on very bad days, she will sometimes wear these during the day, but only for sitting. We find that this cradle doesn't suit her well for moving about (it does have velcro strap to help keep it on, but it's a bit heavy and adds to problems if she walks around with it. In addition to the immobilizers, when needed, we raised the head of the bed and used body pillows to create support where we can. This makes it very hard to toss and turn, which is a good thing. If you think these may be of help, talk to your medical team and see what they think. The Don Joy products have been our best brace/immobilizers to date.

Penagain Y shaped pen for writing

We tried every writing device and combination you could imagine for my daughter's hands and the hyper extension/low muscle tone. She didn't really take to anything well enough to correct the problems. Dr. Tinkle gave her a Y shaped Penagain to try out. This was a very clever option for her that would have been great, had we introduced it at a younger age.  The trouble was that she was old enough that it was very difficult to get used to. She did really well with working on switching her grip on her own around 6th grade, and that has worked fantastically. Before that, she was not ready. I think this Y shaped pen would have been a life saver during the elementary years and I would have loved to have known about it early on.
We also found that typing was easier for her, and especially on keyboard with soft, low profile keys. Her school has provided her a laptop to use for all classes, ever since her OT advised such. This option has been very good, and it also cuts down the number of items she would be required to carry with her from class to class.

Slant board - adjustable and collapsible

Early on, my daughter's occupational therapist recommended the use of a slant board to help support her wrists. We found this affordable solution that travels easily, as it is collapsible and durable. The one we have adjust with heavy duty velcro for different angles of writing. When collapsed, this is incredbily thin, though not entirely light weight. It can travel in a bag for school use, though we opted to keep binders as makeshift slant boards in each classroom. For home use, though, this is a nice option that can travel all over the house for the kid who loves to write and draw. Some schools will purchase items like this for the students to use, if the OT through the school system advises it, so it is worth looking into if your OT recommends a drafting desk or slant board to support the hands and wrists. We purchased ours online, here.
In addition to the slant board, her Genetic Doctor recommend Y shaped pens and other support options. I will add a listing soon.

Shoulder Taping with Leukotape - our experience

Almost every PT we have seen wants to try taping the shoulders. For many people with ehlers danlos syndrome, this is a daily help. For my daughter, it was not a successful option. There are two reasons this didn't work well for her:
1) She still dislocated as often with the tape as she did without. This could be an issue of needing to change the technique, or it could be that is lacked the level of stability she needed.
2) Taking the tape off caused dislocation of the shoulder, which increases the instability.
Because of that, we don't use this, but if you are interested, you can talk to your physical therapist and or med team about the options for your own needs. This type of tape is thicker and less flexible than a kinesio tape. It is meant to be used with a layer of the white roll underneath the tan tape, to protect the skin (so it is a two part taping). Again, I very strongly advise having your PT or professional team member help you with this and have them teach you how to use this support, if it is one that you would like to try. If you want to see the type of taping that was used for my daughter's posterior shoulder instability, Click here and scroll to page 6. This shows images as well as written description of the process our PT used.
Another interested power point on taping options with Kinesio tape can be found here. I am not familiar with these document creators, but I recognize some of the techniques as those that our medical team uses. In the second link, I found the thumb MCP stability method on page 48 to be interesting, though we have no experience with it, nor has our occupational therapist advised it. I am curious if others have been prescribed this approach, and if so, was it helpful?
As a follow up on our daughter's needs, the team opted to utilize immobilizers for an as need basis as well as a custom neoprene vest/wrap, which is being made at this time.

Taping knees for support Ehlers Danlos Syndrome kinesio

 I will have to start with a cautionary warning: Have your physical therapist, Ortho, or other professional medical team members show you how to properly apply taping for your needs as each person will have slightly different needs.  Also, there are tips and tricks that you won't intuitively know, so it really is key to have a professional walk you through this once before taking over at home. Finally, before using any tape product, your team will likely want to do a test patch to make sure your skin can handle the adhesive and fabric.

My daughter's knees starting giving her a lot of trouble in elementary school. When we walk for more than a couple blocks, her knees, ankles, or hips would begin to give so much pain and instability that she would need to stop, sit, or just go home. The change came along with her growth spurts and the laxity that allows her joints to move too far in the wrong directions.  As for the knee, itself, that patella wants to slide out with far too much ease. The taping is only a mild support, and it won't help with more severe problems, but when combined with my daughter's level of ability and ongoing exercises through PT and walking, we find that the Kinesio Tape helps when used as a preventive. How do we use it? We utilize the Patellar alignment model illustrated in combination with good posture, supportive orthotics and supportive shoes. By combining these, she is able to do a bit more and go a bit farther than she could, otherwise. It is a good precaution to take before she uses the elliptical, or before we attempt a longer amount of walking than average. 

If her knees worsened, the medical team has a supportive brace that they would have her use, but for now, she is able to work with this very minimal intervention and continue increasing strength, bit by bit.

As you already know, movement, exercise, and strengthening are key components to success with ehlers danlos syndrome. Having a knowledgeable team is the missing link, to be sure. We have been very happy with the medical team we have established around the Chicago area. One thing we learned, early on, was that using too much support in the form of braces quickly creates more problems than we started with, so we opt to use the minimal support needed and we strive to exercise, in some form, every day. Since my daughter is still a kid, it is most effective when we turn this into a family effort to help keep her on task, and to keep all of us mindful of staying healthy.
Some of the tips our PT gave us was to rub the area where applying the tape to create friction, which allows it to stick better.  Also, bending the knee (see the bolster under left knee) and pulling slightly when applying.  The PT recommended cutting the tape in rounded edges to prevent it from rolling up. Again, when you meet with your support team, they can show you, in person, how to do this. It could be that for your needs, a different approach or tape would be required.

We also have instruction for using a thicker two layer tape for shoulder support, which I will add next. That did not work for us, but some one else may find the information useful, so I will add it to the blog.
As for the finished result, you can see the pink tape knees on the right. This is the method that works best for my child, and the tape has not damaged her skin, which is fantastic. I hope this idea is something that you may find helpful to discuss with your team!