A Question For CIDP Caregivers

Hi Chelle,
What is your husbands current treatment plan? If you get a treatment plan started, there is hope, good hope, that he too may one day return to work. It sounds like presently you guys are not getting treatment. If this is so, yes you may have to quit work. Without treatment, the disease continues to progress and attack the myelin sheath. If the damage is allowed to continue, it can go through the sheath and harm the nerves eventually causing permanent damage to the axon. Once this happens, the damage is thought to be permanent.
As a caregiver to my 11 y/o and a stay at home mom, it is easier for me to make things easy for him than it is for you. You obviously have to help him, but you have to remember to take care of yourself as well. I did not do that in the beginning and was helping with in laws and overextended myself with volunteer stuff at school. I payed for it dearly. Being that you are the breadwinner, you are under far more pressure!!!!! I also found that helping too much makes the person you are taking care of becomes too dependant and does not do things for themselves. So, I guess you just have to use your best judgement as to what he needs, wants, and what you have left to give at the end of the day. Good luck and I would be happy to talk if you ever wanted to, just pm me. Good luck and keep the faith, hope and pray, things DO GET BETTER and we have medicine to help us!!!!
DAwn Kevies mom

Chelle,
This is easier said than done, but possible. You really only have 3 choices. Demand ivig from doc you are seeing now and tell her yes he is getting worse. If she feels you have basic knowledge she may believe you more or fear you! Personally, I prefer they fear me. The knowledge part could come in if you tell her you want to try 2g/kg of ivig again at a slower rate no higher than 50 (since there was a reaction before) Also, ask her if it was liquid form or a powder form. The liquid form is easier to take. The flo rate being slow and pre meds during and after the treatment are key. Explain to her if she does not get this under control, additional relapses, or attacks may add to the damage already there. Once the damage gets to a point of the axons, it can not be repaired, for the most part. Your second choice is to call and beg, plead, cry,whatever it takes to get the other doc see you guys SOONER!!! Tell them he is deteriorating quickly, you really are not lying. Damage that you can not see happens continually and then all of a sudden he is not walking. That is what happened to my 11y/o. I found the 3rd doc we now see a respected chief of peds neurology and called his office. I called, there was no appointment for 4 months, I explained my child might not make it to 4 months! He set up an ER for us 2 hours later, did a l/p to confirm his suspicions and ivig was the next day. Your third choice is the ER. If you go there, don’t give the name of the doc you are using now. Ask for a neuro, don’t sugar coat his symptoms, get them to listen.
I havew been at the very place youn are now. You will get where we are, the road may be bumpy, it took us three docs and about two months from the first sign of weakness to ivig. Be strong, desperate when you have to be and accept any help you are offered. I did not do that and it nearly put me under. PM me if you would like to talk. You will figure this out!!
Best of luck, Dawn Kevies mom

I have CIDP also. It’s not easy dealing with but my husband has to work and help pay the bills.
I buy things from the grocery for my bad days that are easy for me to eat. We have a small college fridge in my bedroom and my husband when he see’s me get bad get’s out the sandwich meats and drinks and places them in the fridge. That way he can go to work and I am being taken care of. On day’s like this he calls alot to check on me and tells me to stay in bed.
Also on day’s like this he makes sure I get my shower before he goes to work. So then he knows, I have gotten dressed and refreshed for the day. On day’s where my walking is really bad. He gets out the walker and toilet chair. Tells me to not go any further.
You may have to develop a system that will work out for both of you. And if he is really bad off, then you may have to hire private duty nursing. Which I have had to do several times this year. We only get them a few hours a week when it gets that bad.
I even pay them once a week even if I don’t need them. That way I have hours in advance. I pay $17.00 a week and have several hours now accumulated!
Hope he get’s well soon! I wish you my best!

[B]Hi Chelle

This is a difficult time for you as a care giver. I was able to continue work for 5 months because my youngest son was still living at home when Frank was diagnosed. The hospital used to send an ambulance free of charge to my home 3 days a week so he could get physical and occupational therapy. Then all of a sudden that freeby was over due to the cost to the hospital, so I had to quit a good job to stay home and care for him. Frank was fortunate that he worked for Verizon and they continued to pay his salary until it was determined 2 years later that he could never return to work, so he had enough years with Verizon to retire at 58 yrs old. We were able to manage but I know that is not the case with so many patients and their families.

I know it’s a feeling of being hopeless and not knowing what to do.

I do need to address this to you, no matter what the circumstances are, you must and I say must take care of yourself or you can cause yourself to have such stress that you can become ill yourself. I thought I could do it all and had a mini breakdown and that didn’t help Frank any, so please take good care of yourself, even if it means asking family to come and take care of your husband so you can have a day to yourself every now and then. You will burn out if you don’t take time for yourself.

I wish you and your husband the best.[/B]

[QUOTE=chelle]Right now the only treatment he is on is meds. Dilantin, Lyrica, Lortab,for the most part. When he first diagnosed he tried the IVIG, but had a allergic reaction. The last nero visit we asked for another try with a different brand and she stated that she thought he was stable and not getting worse. I told her that he was getting worse but she corrected me and said no. I have seen him have 2 relapses in the last month. He goes back to her in October and I called the doctor and let her know about the recent relapse. I had leave a message and she has not called me back.

By the way we have anoather appt. with a nero that specialises in CIDp the bad part we have to wait until March of 09.

Thanks for replying.

Chelle[/QUOTE]
Get a second opinion Please. Where do you live. Hope not in Tennessee. Try and get another opinion sooner even if it is another doc. Keep March for 3rd opinion. It is very important. I have been there. Read my new message about wrong diagnosis. It is sad but true. So get going. Too many neurologists do not know about other diseases or neuropothies. When my husband got sepsis I called the neuro 2 times with no response (they later told my husband I was just updating them only) Not true as I left my cell phone no. My family doc did call me though.