My daughter has cidp. I want to know how do you getting throughout with yours family members, friends …, because I feel so helpless and feel like I have to do something more…I would like to be on her place. It’s not right looking a child going something terrible…Sometimes I think she hates me, only because I asked her how is she,…she doesn’t say anything, but the way she looked me…I love her so much.
Having a child with a chronic illness is so tough on parents, Doda. You are clearly a good mother trying your best.
This NY Times article about five mothers coping with their children's chronic illnesses may offer some insights:
I hope our caregiver members will weigh in, too.
It's hard. Family and friends want to help, but they don't know how to. It's all about communicating feelings, needs, and ideas.
One thing that bothers me the most is always hearing "Are you ok?" or "How are you?" The questions are tiring and the answer will always be the same. Avoid those if you can.
I can only say as an old man of 60 I want to be as independent and as in control of my life as possible with this condition.I think whatever age I was I would want these things.Maybe it's like that.
Also,none of us can point to any clear pathways for the years ahead because there is so little knowledge of our condition so we are its' living researchers,the pioneers,and we who take IVIG can keep relatively well because of a blood product from our fellow humans.That's a marvel I think but we should offer ourselves for all the research that's going so we can get to the bottom of it.
Good luck.
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Brandi, I totally agree.
Brandi Evans said:
One thing that bothers me the most is always hearing "Are you ok?" or "How are you?" The questions are tiring and the answer will always be the same. Avoid those if you can.
My son was diagnosed with CIDP in October 2012. We saw him go downhill through March 2013, at which time he began to improve with the help of IVIG. He was 22 when he got it and was scheduled to graduate from college in December 2012. He had to take a leave and was unable to graduate at that time. He did graduate in May 2013.
Luckily, my insurance covered his costs, as IVIG is terribly expensive.
I don't know when your daughter got CIDP, but there is a terrible beginning period that generally one improves from after the doctor finds out what works.
My son began investigating CIDP and got to know about it thoroughly, as well as possible ways to recover from it. He has been approved by Dr. Burt of Northwestern Hospital for his stem cell therapy program, but we are still working through the insurance hassles.
I hope that you are part of a family of faith. Knowing that God does have a plan through it all and that He cared enough to send His Son to make you His child helps. Those who don't believe in an existence beyond this life lose a hope that indeed, at least on the Last Day, if not before, all things will be restored to perfection.
Realizing that there is hope is very important. Dr. Burt's program and God's promises help to give us hope.
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Well, i think Padre just said everything i wanted to. I am so sorry for you and feel your pain through your words. Please find a support group and or counselors for both you and your daughter. My 18 year old son was diagnosed two years ago this summer. We have gone through the joy of finding a treatment in IVIG to the pain of realizing that this will be his life indefinitely. He finally asked to see a counselor and we jumped at the chance to get him that support. We have a wonderful nurse who comes to do his treatments but as he enters college and the workforce, we are facing the challenges associated with scheduling treatment. He is not ready to explore stem cell treatment as of yet, but i feel it will come. As a mother, i understand every heartache you are feeling. I will pray for healing and peace for you and your daughter. God bless you.
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I wonder sometimes if we need to carry around with us a card or something with a brief description of CIDP and symptoms so we can give it to professionals and others to gain an understanding of the condition.
I always end up giving a brief history lesson to explain it all but it is so tiring over and to tell people over and over again why you are so tired!.Why couldn't we get something simpler!?
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Perhaps we should make a handout and have it available to print from the site? Let me think about that... Any volunteers to create one?
akamalaccas said:
I wonder sometimes if we need to carry around with us a card or something with a brief description of CIDP and symptoms so we can give it to professionals and others to gain an understanding of the condition.
I always end up giving a brief history lesson to explain it all but it is so tiring over and to tell people over and over again why you are so tired!.Why couldn't we get something simpler!?
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That is a good idea. I went in for an x ray and an MRI and people just nod and probably look it up latter if they have any further interest.
Wow I have thought about a business size card with most of the CIDP info to hand people! It does get old trying to explain to people what it is and does!!
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I also have CIDP. I have a facebook support group for people with CIDP, friends, family & carers… www.facebook.com/LivingWithGBS
Sometimes its very hard to find the words to explain to others how you are feeling… If you register on the GBS CIDP Foundation website they post out information packs for sufferers and carers… I found these very useful. Talking with others who also have CIDP has really helped me and i have gained a whole lot of useful information from others experiences.
I hope this is of some help.
Thanks for the tip, Lara Belle!
How old is your daughter? My son was diagnosed when he was just 10 years old. He is now 25. I can feel your pain. It is so hard to not be able to do anything to help those you love. Also family and friends are always giving suggestions of what they think might fix it but the problem is they know nothing about the disease itself. I found it very helpful to inform them about the disease and ensure them that I am pursuing every avenue to ensure that my son is getting the best and most current treatments that are available. I have been dealing with this for 15 years and my sons CIDP has been severe at times. If I can help in anyway with questions you might have, fire away!!
How old is your daughter? My son was diagnosed when he was just 10 years old. He is now 25. I can feel your pain. It is so hard to not be able to do anything to help those you love. Also family and friends are always giving suggestions of what they think might fix it but the problem is they know nothing about the disease itself. I found it very helpful to inform them about the disease and ensure them that I am pursuing every avenue to ensure that my son is getting the best and most current treatments that are available. I have been dealing with this for 15 years and my sons CIDP has been severe at times. If I can help in anyway with questions you might have, fire away!!
My very young daughter has CIDP also. I have a facebook page called Parents of Children with CIDP