Granny seeks help for Mentally disabled and deaf adult/child with CIDP

This topic contains 4 replies, has 2 voices, and was last updated by  DeShea 3 weeks, 2 days ago.

Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
    Posts
  • #116197

    DeShea
    Participant

    I’m new with the forum so please bear with me.
    In the past few years our “34 year-old going on 3” grandson went from full mobility to partial mobility and finally this past year to full dependence on a wheelchair. Thinking back we realize the problems with his legs began eight to ten years ago.

    Jason was recently diagnosed with CIDP and we are utterly devastated. And just as devastated, if not more so, to learn of the treatment protocol. We can’t imagine him sitting still for four hours of IVIG therapy much less the load dose of 4 consecutive days of 4-hour treatments. How are we to explain what is happening and convince him that these infusions are good for him. He has always been a champion about medical procedures but of recent years he has been subjected to more than his share and we are noticing a reluctance – complete with crocodile tears – and perhaps a little distrust. I also fear he will relate the IVIG infusions to his mother’s dialysis treatments and ultimate demise. Am I over-stressing? Please tell me these infusions will not be as traumatic for him as my husband and I imagine. I’m hoping someone in this group has experienced a similar situation and can offer us some insight, advice and encouragement as we travel this road. By the way, Jason lives in a group home – an arrangement we decided was best for him considering we are up in years. It was important for us to know that he would have a good support system in the way of a second family when we leave this earth.
    Thank you for being a listening ear to this troubled Granny.

    #116199

    Electra
    Participant

    I’m bowing to you over the internet.
    My uncle spent his whole life institutionalized or in group homes… well over 65 years.
    Appointment fatigue is hard enough when a patient can fully understand what’s happening.
    I was sitting here reading your story over and over thinking I have nothing to offer, but then I had an idea. (Okay, I’m on the GBS end of things, so if I had IVIG I don’t remember because I was asleep a lot while I was in the hospital and things are still a blur.)
    Has he ever had a weighted blanket? You didn’t say what his mental challenges are, but these blankets are supposed to be quite calming. Even a lap-sized one could help. ??? And maybe some dexterity play-do stuff to squeeze when frustrated?

    #116200

    DeShea
    Participant

    I hope I’m doing this correctly. In response to Electra, thank you for your input. One never knows exactly what to say to another person’s distress.

    I’m aware of weighted blankets. An acquaintance has made several for autistic children she has met but I hadn’t thought about one for Jason. I sometimes forget his intellectual age because he is a 6’2″, 180 lb guy. He does have a favorite comforter plus a couple of stuffed animals that we hope will be helpful during his infusions. I like your play-do suggestion and I think it is worth a try although a bit tricky since his hands are “fisted” with full use of only his thumbs and first fingers. I’m in the process of loading videos and slide shows of family and pets onto his Nabi tablet. If there is sufficient space I will download a u-tube of wrestling match. His Nabi already has videos of Monster Jam and remote control car races. These are his favorites for entertainment. Crossed fingers they are sufficient distraction during his infusions.

    Today I spoke with a knowledgeable gentleman who pretty much validated the doctor’s diagnosis of CIPD. Hubby and I were wondering/hoping if there were a chance that the doctor was wrong. Limited insurance approval arrived today. It appears that we will soon join the “IVIG infusion world”. Now to find a means of communicating to Jason what is about to transpire. I wonder if there is a video of the IVIG procedure available. I’ll ask the organization and search on-line. This may or may not be helpful. If you or anyone has any suggestions we welcome them.

    Thanks again for responding to our inquiry. You don’t know how much it meant to find your message in my mail box. You’re a jewel.

    #116201

    Electra
    Participant

    Hi again!
    You are doing “this” wonderfully! You’ve explained your situation clearly and without over-doing it.
    The amount of work you’ve invested in your grandson’s care really is admirable. You seem to anticipate things that many people might not think of.
    Play-dough wasn’t what I meant, but I was tired. Physical/occupational therapists have putty that comes in different thicknesses. I was trying to picture what he needs… The info about the clenching fists helps. The therapy I had included this putty. TMI time: The umbilical cord was wrapped around my hands and feet, so I have deformities. The one that relates to your situation: One of my hands has a bunch of stubs and a “normal” thumb. All I could do with the weakest putty was clench what I could and dig my thumb in as hard as possible. I thought that if your grandson had/has clenching, some of the strongest putty might help him not use his thumbs to hurt his hands when he is feeling stressed.
    I’ll be thinking of your family…

    #116204

    DeShea
    Participant

    Electra, I couldn’t let another day pass without expressing my gratitude for your timely and worthy responses. Thank you. I’m so sorry to learn of your birth deformities. Life is tough enough and no-one needs another challenge to overcome. Your therapy dough and play-dough are basically the same. I’m thinking that this wouldn’t interest Jason sufficiently to use as a distraction but its worth a try. I spent most of yesterday watching u-tube videos of people on IVIG but found nothing that demonstrated the procedure. Perhaps this is not the way to go anyway. He will be exposed to the procedure when we introduce him to the infusion unit. Time will tell. Since he has always been a good sport about procedures I’m hopeful that he will take this infusion business in stride. too.
    Thanks again. May you have a blessed Christmas filled with family, friends, good food and lots of fun memories in the making.

Viewing 5 posts - 1 through 5 (of 5 total)

You must be logged in to reply to this topic.