Mom with recent diagnosis of CIDP
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March 31, 2009 at 8:52 pm
My mother has been 5 weeks in hospital, and 3 weeks on a ventilator, paralized from the neck down and has pnuemonia. At this point they believe that she has CIDP, but say that they won’t know for sure until it has been 8 weeks. She didn’t respond to IVIG, she relapsed after two weeks, so she has now finished two weeks of plasmafleresis. My mother has never been a day in hospital in her life. I can’t believe that the degree of pain that she is having. They have her on morphine and other things for when that is not enough. I know that my mother has never taken anything for pain so this must be agonizing. She watched the educational tape today that is used to teach them about the syndrome. I think that she is having trouble getting her head around the fact that this may take a really long time to recover. She is 71 going on 50, previously had been extremelly active, now to this.
I have been trying to cheer her up and keep her postive, but I know that when you are the patient you find it hard to believe anything. She doesn’t have access to her computor to surf like all of us. She won’t let any of her friends come in and visit, because she doesn’t want anyone to see her like this.
I have been trying to find some positive stories so that I can read them to her, but I have to admit I have had a hard time finding only a few. I don’t want to tell her that there may be a chance that she may not walk, I only want to tell her the feel good stories. Also ones of her age group, and ones of her severity, because the young patients seem to recover so much faster. So if anyone can direct me to some things that I may have missed in my reading, I would appreciate it. I understand that keeping her positve is crucial, and she is feeling so down right now.
Thanks in Advance -
March 31, 2009 at 8:59 pm
Hi there.
You might want to talk to the dr’s about doing a combination of plasmapheresis & IVIG, if she only lasts 2 weeks on IVIG.
What we’ve all figured out here (I don’t know how far behind the dr’s are in this) is that IVIG lasts in each person a different length of time. Some people can go 4 weeks between treatments while others may need weekly. The dr’s need to figure out what works for her. A common theme used here is that treating CIDP is an artform.
I think it would help your mom to know that there is a whole community of CIDP’ers out here. Let her know about the young kids & the older adults. Let her know she’s not alone. I think that will help a lot – I know it helped me to know I wasn’t the only mother of kid with CIDP.
Why do they have to wait 8 weeks to give her a diagnosis of CIDP? I’m thinking if she had IVIG & saw improvement that any relapse after that would give a diagnosis of CIDP.
Good luck & we’re here if you need us.
Kelly -
March 31, 2009 at 9:15 pm
Thanks for your response. They didn’t feel that my mom even responded to IVIG, which did suprise them. She is in a highly renowned facility that is the only one in the area that deals with the GBS/CIDP. They get about 10 patients a year. I think that they are still trying to figure my mom out. She responded soon after treating her with plasmafleresis. I think that I am still in shock myself, and just trying to get her through this.
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April 1, 2009 at 5:59 am
Yolanda – I was in a similar situation to your mom – paralyzed neck down etc. It took ten full days of IVig for me to respond – twice the normal dose. How much did they give your mom?
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April 1, 2009 at 10:44 pm
Hi Julie
My mom had it for two weeks. She didn’t even have a remote improvement. Since they have started the plasmafleresis, she is showing tiny tidbits of improvement. Her lung volumes are improving finally, so they are talking about starting the weaning process.
What was it like for you? -
April 1, 2009 at 11:47 pm
Some who do not respond to ivig follow with pp as your mother is to cleanse the body of as many auto antibodies as possible and then immediately follow with ivig to flood the body with antibodies. A simple expalnation is the pp rids the body from as many autoantibodies as it can and the ivig has less work to do in fighting them off and can focus on building up antibodies. As I said simple condensed version. Once she is more stable, a regular treatment plan will be figured out for her it may include pp, pp and ivig or a host of other suppressants that may be what she needs. Good luck!
Dawn Kevies mom -
April 8, 2009 at 10:24 pm
Hi
Thankyou for posting to my thread. With CIDP are you on a lifelong program of treatment. Do some people recover and to never look back.
We have been desperate for information from other patients. On average how long is the period in the beginning. (Meaning the acute portion that she is currently in) My mom is currently still in ICU on a ventilator, but is now showing strength in her lungs, and in her hands only. She came off the ventilator today for 35 minutes. She has had some improvement during this 5 weeks, but then it goes away. How long does it take to come completely off the ventilator, will this take a few more weeks? I have read alot of articles on the internet, but I like to hear about patient experiences. I have a medical background so this info is factual, but not always the patient experience. Sorry for so many questions. They were supposed to bring in a recovered CIDP patient, but for some reason nothing has happended.
Thanks Yolanda -
April 9, 2009 at 12:05 am
Yolanda,
CIDP is different for each patient. Some will have treatment for a short while and then not require any more but others will require lifelong treatment.
The treatment also varies from patient to patient. The important thing is to find out what works for your mom. Keep reading this site as I have learned so much that has helped me. I used to have IVIG every three months but then read that the IVIG lasts only 42 days so now I have IVIG every month.
Is your mom taking anything for nerve pain? I take gabapentin and can not function without it…I have tried to go off and have crawled to the cupboard to get some pain relief.
Keep reading I am sure others will give you more ideas.
Rhonda
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April 9, 2009 at 9:54 am
Hi Yolanda,
It is possible to go into remission, some do some don’t. Some people get treatments weekly, some monthly etc. It really is just trial and error, unfortunateley in the begining there are ups and downs. regarding how soon she will recover. There is no timetable, it is a disease of patience and unpredictability. That is a true answer. The way that I try to look at it is, we have a medicine and we can control it, we just have to figure out the best way to do it. If she is still only on pp, maybe they could try the ivig right AFTER a pp. Maybe she will need to be on a immunosuppressant as well. Keep the faith and try to ask for help from other family members. Good luck to you!
Dawn Kevies mom -
April 9, 2009 at 10:13 pm
Actually my mom is on so many things right now. They have started her now on steroids, also the plasmafleresis. She is on a variety of pain meds. I guess being on stereoids, this will give her some pain relief as well. This week has certainly been a better week. She was off the ventilator today for 1 hour. I think that the hardest thing, is that this is such an unuasual syndrome, and being that it is so rare, you just can’t get your head around what is happening. This level of pain, is this what all of you have had to go through? How do you function? I am felling a bit more at ease now. I try to keep my mom focused on getting better. I told her to pick a goal and just focus on one thing. She is desperate to read a book. She wants to work on that first. We have a huge pile of magazine’s and books. She is also dying for a coffee. They told her if she can stay off the ventilator for more than two hours, and continue to speak clearly as she has been, they will let her start eating certain foods, a little at a time. She gets very anxious coming off the vent. They try to do it when I am there, so that she has someone in the room at all times. I so appreciate all that are posting a thread, I bring alot of this info to my mom.
Thankyou -
April 10, 2009 at 3:53 pm
Yolanda, So sorry for you worry, but sounds like your Mom is improving,hopefully more every day. I am turning 70 this summer, and was dx in May 05. However, due to a lack of a Neuro. I am not sure where I am. I believe I must be in remission, as I take no treatments or meds. However, the pain is so bad I cant walk, but live a good life zooming around in my power chair.
What I want to tell you is this story. When I was first dx I had a terrific Neuro (now gone from the area), and he introducted me to a very sweet lady who was 85 at the time. She had the full attack, like your Mom, they even gave her last rites. Here she was in the infusion room of our clinic,, where she had follow up IVIG every 3 months. She walked over to meet me and proudly said she was living at home and very happy. So do believe your Mom will be fine, just takes time. Regina -
April 13, 2009 at 2:35 am
Yolanda,
Your mom sounds like the kind of person who will beat all odds no matter what. It is always ugly in the beginning. Confusion, uncertainty, loss of control, fear of the unknown and pure terror are all part of the picture. And then there are the daily milestones and breakthroughs. I suggest you keep a daily journal to show your self and your mom the progress. It is like trying to actually watch a flower bloom. You may not be able to see it with your naked eye but when you do a comparison of time, you see that things are changing and eventually that flower is in full bloom. Keep reading these posts, know that everyone is differant and treatment is based on trial and error so no one has the exact formula, but everyone is equally on the same team of support and you and your mom are part of that. Please don’t lose hope and know that many have been where you and she are and have moved mountains. Your mom will too. I really believe that. Hang on.
Linda -
April 14, 2009 at 3:28 pm
Hi…I’m not your mom’s age, but I have very aggressive CIDP. I was in the hospital nearly 9 mos and at one point had 31 doses of IVIG in a row, which didn’t do anything. What my doctor figured out is that my body couldn’t get any benefit from the IVIG until my plasma was washed out. The plasmapheresis didn’t work by itself because my body produces antibodies really fast. I have to get plasmapheresis and IVIG. My doctor experimented with 5 days of plasmapheresis over 7 days and then did 5 days of IVIG. That seemed to make a big difference. After that, they determined I needed 1 day of plasmapheresis and 1 day of IVIG every week to keep me from re-experiencing total paralysis. Most of my 9 mos in the hospital was experimenting, but when they combined the plasmapheresis & ivig tx regime it only was a matter of weeks before I was able to walk out of the hospital with a walker. I know it is really frustrating for your mom, but having hope is a huge part of the battle. The other part is having doctors willing to try various combinations of treatment until they find one that is effective. Hang in there & know that we are all rooting for your moms recovery.
God bless you, your family & your mother.
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June 18, 2009 at 9:08 pm
Well it has been a long time since I have posted. My mother has had an amazing road of recovery. She suddenly turned the corner after 3 mnths in ICU. She went on to a wonderful rehabilitation facility and as of friday has been able to walk using the parallel bars. Her pain is now only in her feet and legs. She has been reduced from the Plasmafleresi treatments to now once a month, then to be re-evaluated. She has taken herself off of all her pain meds, only to need it if she does too much in a day. All her bodily functions have also come back. She says she can easily live with the little hand tingling compared to what she has just been through. I find this amazing since the neurologist was skeptical that she would walk again at all. I think that because they said she wouldn’t walk again, she put her mind to proving everyone wrong. I continued to bring her only the feel good stories of hope, so that she could see that anything is possible. I kept telling her that positive thinking was the key, thanks to all of the advice in all of the posts from all of you. As soon as she realized that she was making progress, she suddenly poured on her determination. She was admitted to rehab May 24th, with only the ability to sit in a chair for 2 hours. Today we practiced transferring in and out of a car! Wow the power of the mind!!:)
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June 19, 2009 at 12:47 am
Such great news!!! Congratulations to you both. Keep up the good fight.
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June 20, 2009 at 12:02 am
I still don’t understand why they have dx your mother with CIDP this early on. I was in a similar physical condition to your mother back in 2002, dx with GBS, & it wasn’t until I showed no improvement after 8 weeks that I was rediagnosed with CIDP. It is still possible that she has a classic case of GBS, & if so, she could make a full recovery & never need treatment again.
If she does have CIDP, treatment might be trial & error. If IVIG does not help her, PP might be what she needs. Or immunosuppressants, or even chemo like I had to resort to. Even if she doesn’t make a complete recovery, she might still have a good quality of life. I need AFOs to walk and suffer from the dreaded fatigue, but other than that, life is good. BTW I remeber being in tremendous pain early on (mostly my feet), but I get by with 1800 mg of Neurontin daily. I wish her the best of luck, it might take some time…
Pam -
July 25, 2009 at 9:39 pm
Thanks for all your responses. I can’t believe how unique this illness is for everyone. I guess that is what makes it so challenging to know how to treat all individuals. My mother goes home this Thursday. I am sure that she is scared, she hasn’t been home in 6mnths. She is now able to to walk with a walker a couple of times up and down the hospital hallway. She still has a long way to go. We have run into a few patients that have had this, but all so different. They are suprised that she is going home many months earlier than they ever thought. Does the Plasma treatments ever stop? How do they know if she ever will stop needing it. Can they monitor this through her blood? Or is it by symptoms only. I don’t ever get to see her specialist with her anymore, so I don’t get the chance to ask these questions. My mom is still hoping to be rid of her pain meds, but it looks like she will need something when she goes home. She tends to do too much in the day and pays for it at night, with her legs. She often complains of having trouble with cold feet and legs at night. After warm blankets, she can move better again. Anyone else have that? Does the pain ever go away eventually?
Thanks Yolanda -
July 26, 2009 at 5:28 am
[SIZE=”4″]What wonderful news! Please give “mom” my congratulations. After six months of being in the hospital the outside world will seem huge. I really missed the “security” of my hospital room. Listen closely to the little things she says as that will give you lots of clues to where she is in this big process.
Since you asked, in the last 14 years I have never gotten over the cold feet/legs or the pain. Neurontin has been my life saver. I take more or less as the day/night demands. But as you said, each case is a little different so “one size” doesn’t fit all 🙂 I wish you all good luck as you navigate the next part of this journey.[/SIZE]
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July 28, 2009 at 10:52 am
Hi Yolanda, it must be very hard for you to see your Mom like that but let her know that there are other people out there that are with her and that have been throught the same things that she is going through and she’ll make it….I was diagnosed with cidp in May 2008 after a 77 day go in ICU were I was totally paralized and had a treck I also developed anmmoina (sorry for the spelling lol) and was on ivig, steriods fentinol, gabapentin just to name a few, what a nightmare!!!!! I walked to work everyday 5miles and was very active it knocked me for a loop…but when I left the hospital I was using a walker and now I can walk and do most things that I could before and am taking no meds at all so tell your Mom to hang in there (I was 51 when all this came crashing down on me and my family) it well get better and there is a light at the end of the tunnel if you need to talk I’m here and if your Mom wants to talk thats even better….but we are all here for both of you..keep well and hang in there Brenda:)
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August 7, 2009 at 11:05 pm
Hi Brenda
Thanks for posting. It is nice to know that you have done so well. How long before you actually felt like you had a handle on life again. I can already see after one week at home, that mom has got a bit of a routine going. She was really having difficulty in the beginning. I think that she was overwhelmed. Today was the first day that she actually didn’t sleep. She rested but didn’t feel the need to go to sleep. SHe still has to take many meds, which makes her feel horrible. The Prednisone si the worst, with making her sweat and it makes her feel horrible. She keeps a positive attitude. She was down when she first came home. Her fatigue was actually worse, but now she seems to be looking a bit more chipper. She was lucky to just come home with canes and a walker. Even now she just uses one cane. Her legs and feet seem to be the worst at night. Alot of stiffness at night. She has lost alot of weight, so we have to build that back again as well. She couldn’t afford to loose any weight before she got sick.
Does your legs bother you, or your feet. What residuals do you have
Thanks again
Yolanda
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