Granny seeks help for Mentally disabled and deaf adult/child with CIDP
December 20, 2018 at 12:15 am
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.
December 20, 2018 at 9:31 pm
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?
December 21, 2018 at 11:43 pm
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.
December 22, 2018 at 12:54 am
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…
December 23, 2018 at 5:13 pm
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.
February 24, 2019 at 9:07 am
Hi. A little birdie asked me to see how your family is doing.
February 25, 2019 at 1:24 pm
Hi Electra, Your timing is spot on. Jason begins his therapy tomorrow. The first dose will take place in a hospital out-patient infusion center followed by three consecutive days of home infusions. He was originally scheduled in a different center but they cancelled at the last minute because the nurses were concerned that he might experience side effects. I have been literally on the verge of a melt-down over this whole ordeal. The “not knowing” is the hardest part: Not knowing if the diagnosis is accurate; not knowing how to explain to Jason what is about to take place; not knowing how he will respond to treatments (physically and emotionally); not knowing what we can expect from the infusions; the list goes on and on.
When life was gloomy or she was stressed about something my Mom would say “This too shall pass.” This promise has been my salvation many times, but in this instance I’m not feeling the same comfort and peace from this knowledge.
Thank you for thinking of us. Hearing from you made my day. I promise to keep in touch and hope you will do the same.
February 25, 2019 at 2:47 pm
Can anyone on this forum explain to me what I might expect as our grandson begins his therapy. He is not able to relate what he is feeling other than to “hand sign ouch”
If he may feel a sensation from the infusion, knowing this will assist us in explaining it to him.
Will the infusion cause him to be tired or feel ill (nausea, etc)? The only thing we have learned is the possibility of a headache.
If so, will these feelings increase with additional doses or does his body adjust? As I shared with Electra the hardest part of this adventure – if you can call it that – is the not knowing. Any input from those of you who have been there and done that will be greatly appreciated. And I do mean “GREATLY”.
It seems I had other questions to run by you but my mind is all tangled up with the upcoming events. I’m almost positive these will materialize as soon as I hit the “Send” button. Thanks.
February 27, 2019 at 12:07 am
Hi. How did things go at the appointment? [I’ve had computer issues (aarrgh!)]
December 6, 2019 at 12:01 pm
I just wrote a long update in another section of this forum intended to help people see a one year positive story about diagnosis and treatment. Positive is a relative term with CIDP but we have learn to look at things differently
Than we used to. I am a caretaker for my lifelong friend and one of the things I think it’s important for you to know is you are the most valuable resource your grandson has. He cannot afford to lose you. Statistically more than 30% of caretakers die before the patient does. You must take commit to taking care of yourself first. I can give you some tips, you can get a counselor through United Way or other local agencies, church, there is help for you at no charge.
You are an amazing person and you are doing a fantastic job of blazing your path through daunting challenges. CIDP is an overwhelming thing to wrap your brain around alone never mind the other issues complicating your situation. Your rampant anxiety is not good for you. You need to get in control of you first of all. Your life and your grandson’s depends on it. Warrior-like people like you – and me – are really good at solving everyone else’s issues. We don’t even acknowledge we too may have issues and it would feel too selfish to draw attention to them if they existed. This is way too much for anyone, even Wonder Woman, to handle alone. Contact me if you like and I’ll suggest things that helped me because so much of where you are is familiar. Your patient is going to need you to be healthy and strong and he is going to need to be too. God bless you and your husband and grandson. There is hope for him to get better!!
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