Emily is going to physical therapy – any advice?

    • Anonymous
      August 14, 2009 at 12:41 pm

      Emily had a check up with her neuro yesterday. She is still doing really well (KNOCK ON WOOD!) and has tolerated the transition to IVIG every 3 weeks fantastically.

      Emily’s gym teacher is a really…well…jerk. He is required to test the kids & give them gym report cards by the school district. He makes a REALLY big deal to Emily about not being able to touch her toes during sit & reach. Which then makes Emily feel bad about herself & she often cries after school on gym days.

      We spoke with the neuro about it & he wrote a rx for PT for Emily to learn how to stretch her hips to do better on the sit & reach.

      I’m trying to find a place to take her to. I’ve never been to PT before & don’t really know what to expect. I was hoping you all could give me some advice on what should be done, what’s appropriate, how to find the best place, etc.


    • Anonymous
      August 14, 2009 at 3:39 pm

      Hi Kelly, great news about Emily but sorry to hear about the jerk of a gym teacher.

      Connor recently went thru PT for tight heel cords. We’ve done all we can do now and the rest needs to be done at home.

      With Connor, it’s different so I dont know what kind of stuff they’ll have her do but one thing that helped us is that Connor wanted a male therapist so I made sure of that and that he was trained in dealing with kids.

      best wishes…hopefully soon she will stretch and reach farther than the stupid teacher !


    • Anonymous
      August 14, 2009 at 3:41 pm

      oh, and…

      go to a facility b/c they have more equipment. They probably will send you home with exercises to do but for sure start out at a facility. One that isnt too big…but isnt too small, either. We used Community Rehab…I dont know if they are national…but they were all very good.

    • Anonymous
      August 14, 2009 at 7:09 pm


      CIDP has left Emily with a temporary physical challenge [I hate to use the word handicap]. When Patty was going to school there was a thing called an IEP that would spell out what the school would do to help her overcome her challenges [she was deaf]. You might look at something like that for her for PE. That way the PE teacher could be an asset instead just an ass…

      He/she could offer her exercise that will help her gain physical dexterity. They might try to shy away for it since it is a temporary problem. However you might want to approach it from the aspect that it is going to take a while to overcome and a “team” approach is really required.

      Just a suggestion. I may be way out of date with my information. The PT sound like an excellent idea.

    • Anonymous
      August 15, 2009 at 6:23 pm

      Thanks Stacy – I am trying to find a facility. My husband went to one a few years ago for his back & it did help. He liked all of the different machines available. I don’t like them because they messed up on billing & then took forever to reimburse us. So I’m trying to find another one near our home.

      Jim – I have had so many problems with the gym teacher. I asked for an IEP for Emily & he said they don’t do them for gym. I was supposed to chair a committee this summer to get a program in place for kids like Emily. I received an email about a month ago stating that funding was cut for gym & they would not be able to implement any changes to the program.

      I have since learned there is an IEP available & I am going to ask for one. The neuro thinks I should hold off on it, but I can’t stand for Emily to be miserable in gym for another year.

      I hate to say this but I am glad that funding was cut from gym because now Emily will only have it once a week instead of twice. I’m hoping that takes some of her stress away.


    • Anonymous
      August 15, 2009 at 11:50 pm

      Kelly, in choosing a facility, make sure they know about cidp. It will tell you if they are up to date on things.

      I have been to a few different facilities, only one knew about cidp and that one was the best I went to.

      Treat it as if you were looking for another Dr. And make sure they know how to treat children, its alittle different then treating adults. We were just given a script for pt for my daughter this past summer-she couldn’t touch her toes standing up or sitting down. I can touch the floor, she can reach her ankle just barely. Aqua therapy was also suggested with my input with the Dr.
      Please tell Emily she is not the only one who can’t touch her toes. It has nothing to do with her cidp, my daughter is healthy as a horse and active, but still can’t touch her toes. That gym jerk is blowing this way out of the water! Sorry to hear Emily is having such a hard time with that class. Please give her a Huge Hug for me!!

    • Anonymous
      August 16, 2009 at 7:43 pm

      and it may take lots of ‘educating’ on your part about CIDP, but like doctors…there are hundreds of neuro and motor issues that they must and do address. Key to that is the underscoring of the NOT DOING 5 ‘reps’ of 20 type exercises…Rather 2 to warm up and switch off onto other tasks and then back again. I have found that this has worked best for me and also…Be sure to ask the ordering doctor to include a ‘home program’.
      These can include a theraband course of exercises [passive resistance that builds strength and elasticity in the muscles] and other very low key things that any adult or child can do at home..AT THEIR OWN PACE. Less pressure and results can and do happen! Did for me.
      Most of all ‘tools’ one needs for a home program can be got at box stores or on-line for well under $100.
      What I find hardest is the ‘structure’ and guidance needed to plain old do it RIGHT at home, on one’s own.
      ANY therapist who has worked w/MS folks will have a sort of understanding about the whole nerve connection aspect. So in asking about expertise, etc. ask about this…also check out the state licensing boards to be sure they are ‘Certified’ Therapists, etc. I believe they are under the ‘medical licensing’ aspects? At least they are where I live.
      Never let a PT ‘push’ too hard! Intervene and try to explain why… those who ‘get it’ are good and those not? Well, Won’t go into that.
      I have been myself going thru a home PT series myself of late, due to some severe falls and a likely relapse. I have been unable to walk on my own for over 2 months and have another 2 months to go, if I am lucky. I’ve re-learned to walk twice before, and definitely plan on doing so again soon!
      As for that Gym Teacher? ASK him if he knows of anyone w/MS! IF he does, Tell him/her that what your child has is similar and must be ACCOMODATED accordingly [Americans w/disabilities act does cover this I believe] BY LAW!
      You are going to do one heck of an ‘education’ job on either this person and/or their boss and soon. The ‘standards’ that apply for those unaffected do not appy to us! That is in no way a cry for ‘special treatments’, by any means, rather an adaptation of the ‘standards’ for this medical condition. It’s not an outrageous request in this context, is it? No child should be singled out for being ‘different’, but should be accomodated to achieve the best they can.
      So many obstacles, and in such silly places! My heart is with you in this for sure, no questions about it.

    • August 17, 2009 at 11:06 am

      Woman!!! 504, not iep. 504 allows for accomadations, the iep will put her in the special ed catagory, you don’t want to label her. With the 504, I was able to sit with the counselor, nurse and principal and discuss the need, or accomadation. Later, when she goes to middle school, or HS, if there is an iep, she may be grouped with others who have all sorts of handicaps. If you want, I can ask my neighbor if she will recieve an e-mail from you and she can advise you on the Michigan law and what her professional opinion on your situation is. I will call you.

    • Anonymous
      August 17, 2009 at 4:58 pm

      Hello everyone, I hope everyone is doing good. I have a 504 meeting in the AM with the principle to impliment Masons IEP. It does include PE. Last year Mason did not have to run all of the laps and he was able to bring water to PE. They pretty much let him decide what he could handle. I know he did laps, because he did not want the girls to beat him. He is not in a class for 504, we meet with the principle and anyone that works with Mason. If everything goes well, you don’t have to meet again until next year.