Cool Aid

March 21, 2010 at 10:39 pm

Hi DawnKeviesMom and RhoMcc

Thank you for your helpful kind words. Our Dx was July 2008 and it just seems we are at a standstill for improvement. Actually, I believe that there was central nervous involvement before the cellsept. For over 3 months my life was somewhere between Poltergeist and The Exorcist. It was scary living with a mentally altered person who was paying more attention to the voices that weren’t real than to the ones that were. Fortunately with medication (more!) that has smoothed out. I don’t think I could have handled much more of that behaviour on my own. An out of control person bigger physically than I was more than I could deal with. One night she started to rip out her catheter I could barely hold her arms and call 911 at the same time. She was in hospital 10 days again it was hard for the doctor to justify keeping her there, but somehow the psychiatrist did w/o putting her in a psych ward which I did not want I would have just taken her home right away.

I am also still trying to work full time and have not been able to leave her alone. Honestly, I don’t cry at all, probably because there’s no one else to fall back on. Also, while friends of mine have been helpful when they can be, of course they don’t have a clue what goes on here most of the time. Have either of you experienced any of those bizarre symptoms in your children (my daughter is now 34)? Just wondering.

I feel bad for my daughter in that she will most likely never marry and having children now seems to be out of the question, especially with the cell sept. There are other things that have happened that will most likely preclude her having children, in a way I am grateful as I said before, since I would most likely have the responsbility of any children she had. I have enough responsibility. She still cannot take on the responsibility of her meds, we tried with unsatisfactory results, part of which put her back in hospital 11/09.

Well now I am sure I’m off the thread but would like to hear from the man in San Diego again.

Cool Aid

March 20, 2010 at 11:50 pm

Ken, first of all I am so sorry for all that you are going thru and all the uncertainty. Of all of people whose comments I read, your CIDP seems to be more like my daughter’s than anyone’s. We, too, typically go to 2 or 3 doc appts. a week, all seemingly for nothing. She is currently, besides pain meds and other anxiety meds, getting plasma exchange 1 x 3 wk, and 2000mg cell cept was started in 11/09, I understand it takes months to know if that is even effective. She did not respond to IVIG and became much worse (could not breathe on her own, but that aspect responded to PE immediately after first 5PE’s). After over 2 years now, she can barely walk with AFO’s and a very stable walker and that is very, very slow. She, too, has osteoporosis and I am concerned that one fall (she has had more than her share but not lately!) she’ll break an arm or a leg.

Neuro appts. are at the county hospital in LA County and we’re lucky to get in once every 4 months. That usually takes most of a day!

She cannot drive a car (can you?), still can’t do things with her hands, like use a knife or anything requiring fine motor skills and when not wearing AFO’s is still in a power chair. Weight seems to go up and down depending on the reaction to whatever med she is off/on. We don’t have a shower that she can use at home, and even at that with the perma cath (and that fortunately we have home health for flushing/cleaning once a week) she cannot get it wet, so we have to pay Supercuts to wash her hair and getting out of the bath tub is breath taking and heart stopping.

While I certainly don’t mean to minimize anyone else’s pain and suffering, it seems like many of the CIDP people have more mobility than she does. I don’t know how anyone is getting along with small children w/o help. My daughter is my other full time job and I am grateful NOT to have grandchildren because they would be mine to take care of. There’s just no way someone with her very limited mobility, feet, legs, arms, hands, could manage the needs of young children. Her physical needs were so extensive when I brought her home (diapers, bedpans, bed bathing,feeding, dressing,teeth brushing) that some days my legs were numb just from standing, pulling, pushing. Just getting her in/out of the wheelchair sometimes took 3 people and the transfer board, of course I was the lead person. Thankfully her mobility is improved, but there are still many things, after 2+ years that she can’t do.

What I am wondering and could not tell is, where you are going in San Diego? Is it Scripps? Has whoever you’ve been seeing been able to tell you why you have CIDP? To help with pain? With all the wasted time we spend here in LA County driving down there does not seem all that outrageous. Of course the cost would be a big consideration, I spend a lot on my daughter every month, but am extremely grateful for all the benefits she has been extended by the State of CA. She is Medi Cal only, not medi medi.

Hope I did not get off thread too much, but could not figure out how to start a new thread and I don’t mind that others are able to read this. Your life sounds so miserable, every moment excrutiating. I am truly, truly sorry. I hope that the docs see their way clear for the stem cell procedures. I will look for your messages with updates.