Ask an Angel: School Age CRPS & Education

My child has had CRPS for a few  years now! It’s in the foot, ankle, and hand but really bad with pain in their ear( permanent headaches, nausea, vomiting, dizziness, and fainting)!

They’ve started taking some medicine which really improved the joint symptoms; the pain is still constantly there but it’s easier to deal with. Then they have more medicines for a stomach pain and nausea and has been on medicine for migraines for 6 weeks now.

School

Going to School with Chronic Illness is hard, with CRPS it’s an Ineffable Challenge.

My child copes really well with these symptoms when they are all the time but when suddenly they worse, they communicate with the teachers at school that symptoms are extra bad and most of the time they are letting her leave the lesson.

  1. As a mom, how do kids cope trying to deal with this and going to school?
  2. What can I do to work with school (who are probably going to get fed up in the end) about the need to get out of class?
    1. I get the impression that they think that as soon as my child feels a remotely sick its communicated to them. But this is not the case, as my child actually feels bad constantly and only tells them when it has progressed to the point my child’s has blurred vision and head is spinning!!

Any advice on how to help would be really appreciated!

Tagged , , , , , , , . Bookmark the permalink.

11 Responses to Ask an Angel: School Age CRPS & Education

  1. Kaitlyn says:

    hello ! I was diagnosed at 16 !! School was very tough between the pain , doctor appointment , spinal blocks and physical therapy . It was also isolating at times because not many people understood my disease. I was very lucky for teachers who understood , let me take class work home and made up my finals so I wouldn’t get behind ! Give her all the support and understanding you possibly can and sit down with her principle and teachers so they can fully understand what’s going on!!!

    • Naanad says:

      Kaitlyn, do you think there might be something that should be discussed to help them understand better? Do you think the symptoms or some sort of way to communicate that you think would help her teachers understand better? Just coming from the student side of things I’m curious if you have any ways you were able to help communicate better to your teachers when it was getting bad.

  2. Elizabeth says:

    I am not school age nor am I a parent. That said, after being on all the meds and in bad shape for a few years, I am now off them and rely on daily qi gong to calm my nervous system.

    I am wondering if that would be a nice add on for him. Maybe there’s someone local to teach you both how to do it and it could be practiced before school and on arrival home just to create a new baseline and to help alleviate stress which might make things a lot better.

    best wishes for you both in this new school year.

    • Naanad says:

      Elizabeth, is qi gong a meditation technique or stretching or something else?

      • Elizabeth says:

        It’s a moving meditation. I know that probably sounds pretty vague. There are many forms of it and I can point you in the direction of the one i practice if you’re interested. They do a correspondence thing and you pay them to teach you and then you just practice on your own from then on.

        Qi gong is as old as acupuncture and is based on the same premise: that energy moves on meridian pathways in the body. When those are clear, we are healthy.

        But to put it in RSD terms, I believe it sedates my body the way that ketamine does. I have never had ketamine done but i think the premise is the same. My acupuncturist was sedating me for years and i had an RSD specialist tell me that’s precisely why i was able to be med free. I now just do qi gong rather than acupuncture. It’s nice to be able to do something for myself and be in control of it without relying on someone else or to pay to feel better.

        As you know, RSD causes our bodies to become chaotically rewired changing blood flow, immunity, causing pain, headaches, you name it. They offer ketamine which sedates the system so a plethora of symptoms get better. That just happens to be very expensive and, in my opinion, likely toxic and who knows what the long term effect is. Qi gong, when practiced over time (which is basically the definition “energy cultivation”), seems to rewire the nervous system so that almost all the things that were running chaotic with me have stopped. But i have to maintain a practice of it to keep it up. I need a solid 20 mins a day to keep me baseline but i prefer to do more because it makes me feel good. I generally practice 20 minutes in the morning upon waking.

        I was very pleased given that the medical community isn’t always open to the eastern stuff, that the RSDSA recently posted a blog i wrote about it. Here’s the blog post and much of the info comes from a qi gong institute that i ran down on line that has great info.

        http://rsds.org/7-reasons-to-try-qi-gong-for-rsdcrps/?utm_campaign=shareaholic&utm_medium=facebook&utm_source=socialnetwork

        All the best,

  3. Ruth says:

    I was diagnosed with CRPS my senior year of high school, 14 years ago. It made functioning difficult. The faculty and administration didn’t understand it and didn’t make accommodations. They didn’t make allowances for treatment or the illness. Now I’m a teacher. I teach adult education (GED) classes, I love the flexibility. I started in middle schools but CRPS had other ideas.
    My suggestions are:
    Educate those around you.
    Build a support network.
    Share information and be open.
    You may want to look into a tutor to keep on retainer for bad times.
    In college I skyped with my professors in class when I couldn’t function.
    Regarding the pain escalation in class maybe set up a system. I use a stoplight system. Green: I’m doing great, Yellow: I’m rough, Red: I need to go.
    If the school system won’t play ball then you may wish to consider homeschooling, adult education programs, or alternative schooling options.
    Remind your daughter that she is fighting one of the most heroic battles anyone can be asked to fight. She is a hero.

    • Naanad says:

      I think this color coding for the teachers is a great idea. As long as your child communicates before she is bad, it might help the teachers understand she’s not doing it at the first point but rather at the LAST point she can bare. It’s also a non verbal cue she can give just displaying something on her desk. Thank you Ruth for such an outstanding idea!

  4. Jenny says:

    Signing up to see any future answers

  5. Jan says:

    My daughter is 14 has crps in ankle, knee and wrist and ongoing tummy pain, has had it for 3 years. School have been very understanding, but as things are now getting worse her pain nurse has been involved and has been to school and discussed with teachers and prepared fact sheets for the rest of her teachers also her peers have now been spoken too. She is also doing reduced classes with a hope to building to full time again, in the meantime school are trying to sort out home schooling. We are also developing a card system she can use to leave class if she is unwell and needs to go home. Hope this helps.

  6. Diane says:

    I have/had CPS but have very bad head pains,dizziness and was never told that this could be a consequence of CRPS?I smell smoke,have milky sight and squint all the time
    I feel like giving up!

    • Naanad says:

      Diane, your not alone. I didn’t realize how sensitive my nose got after diagnosis until I went into anaphylaxis from AIRBORNE capcisicin (jalapeño chemical). Don’t give up. Just know hyper sensitivity is just one of the many things our body does when our fight or flight systems kick into high gear, just ours never go back to normal when the issues over.

      It’s maddening. But I promise. It’s sadly normal. But we’re here.

      If you’re ever up for it http://rcdom.org/chat. You’re welcome to join us. The times are posted on there and so are links to verify what time it would be for you.

Leave a Reply

Your email address will not be published. Required fields are marked *