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This topic contains 17 replies, has 0 voices, and was last updated by  Lianne99 3 years ago.

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  • #9831

    Lianne99
    Member

    Hi all, I am hoping someone can give me just a small piece of advise. My 17 soon to be 18 daughter (august) is relapsing, she is refusing to go for IVIG and I don’t know what to do…. Talking is a mute point as it just turns out to be a fight… She is mad and when I say mad, I mean very mad… We had a tough 2 years and really thought that remission was in our vocabulary… Neither one of us want to believe this, but it is what I believe to be a reality now. She starts college in a month and had her heart set on living a normal life and leaving this dreadful disease behind her and getting the chance to not let it define who she is….We know relapse could happen, but she does not want to accept this so soon….. Last treatment was May and we had major side effects (aseptic meningitis) from that last treatment…..

    Thank you in advance to anyone who shares anything.
    Mom2Heather

    #100464

    Dick S
    Member

    If her diagnosis was CIDP, she should be prepared mentally for relapses. CIDP does not have to “define” her, but she can’t ignore either the symptoms or what the long term implications could be.

    It is in the nature of CIDP for it to return over time. Different people undergo different treatments, and there are several ways to attack this besides IVIG. I know that talking to a teenager or a 20 something can sometimes be a challenge, but she should not “bury her head in the sand” and ignore the possibility that cIDP could rear its ugly head again.

    One of the hardest things to do with a diagnosis like CIDP is to accept it for what it is. Many people live with the diagnosis and have very near normal lives. Some are more profoundly affected. She should feel lucky that her side-effects are minimal and are not worse than they are. If she doesn’t want to talk with you, put her here on the forum, or have her contact me. I will be glad to chat with her.

    You can live with CIDP. It does not need to control your lives. It might change what you can or cannot do, but you can still do most everything.

    Good luck, I wish you the best
    Dick S

    #100467

    Lianne99
    Member

    Dick, thank you so much, her talking to anyone is really hard. she has not resolved to the fact that this is perminent. And that relapse is possible. I am working a little every day on her her symptoms will ultimately make her return, but I would rather it sooner than later.
    Thanks for the support..
    PS. and no she is not on anything other than IVIG.. She has decided that She is too young for the steriods and the side effects that come with it… We were also told she coudl have one or the other not both at the same time.

    #100468

    Rhonda
    Member

    Is there a CIDP support group or someone that also has CIDP that lives in your area?

    Perhaps you can meet for coffee somewhere and your daugther can talk to someone who understands what she is going through.

    This whole CIDP thing is very scary.

    Give her a hug from all of us here and please let her know that we are here if she wants to chat with any of us.

    There is also a teen section on the forum.

    Take care,

    #100474

    homeagain
    Member

    That if she can find others ‘like her’? That she can connect with and understand better all the life things that are or can be affected by CIDP.
    We all would love to deny that we ‘have IT’? But we do, and must make the best of what we’ve got with what we have.
    If that means IVIG on some regular basis? Then DO it IF it works. I too have had an event of aseptic meningitis [in a hospital of all places] and I wouldn’t wish it on even my worst enemies. But I’ve had only ONE good AI bout over 8 years of infusions. Not bad overall considering?
    The infusions can be managed properly to avoid meningitis and pre-meds and other aspects such as ports can help avoid future pain and problems. But…it means, if it works? A lifelong commitment to getting any sort of short or long term relief. It’s plain and simple get the medicine help? or not and suffer. Should the latter be the choice? Please don’t complain to me? You have the options and while none are fun, your daughter must choose what is the best way for her… considering both the long and short term benefits and detriments.
    She is the one who must do the research and LEARN from it all. Then make her own choices. For good or not? They will be hers and hers alone to deal with. I truly hope she learns more and reconsiders.
    As we adults all do for the good, the bad, and the rest of it.
    There are many here who will be able to help her and not be shy about all the good and bad consequences of decision making. We all row in similar boats about this stuff. Hope and good things in the meantime!

    #100476

    Goodney
    Member

    Amen, Homeagain. Amen.

    #100477

    Lianne99
    Member

    Thank you Homeagain….. she has agreed to Treatment, for now… and in hopes of going on a new maintenance program on Saturday’s… We have an evaluation on the 18th and I we will talk extensively with the Neuro about new maintenance schedule once we get this relapse in order.
    Our closest support group (that I know of) is 3 hours away…….
    I am on vacation this next time they meet, but I think I am going to take a road trip once the next meeting is announced.

    We live in Lunenburg, MA this is about an hour and half directly West of Boston…

    We travel to Boston and Waltham (only one hour away) for Visits and Treatment, depending on where the Doc is on that day.

    #100479

    catherina
    Member

    Just got on the site and feel really really bad for her. I was a pretty bad teenager myself and I understand her feelings of denial. There is really not much you can do as a mom (I know my mother couldn’t despite her desperate trying). Don’t think however that she does not listen to you (as long as you don’t adopt the ‘I know better’ tone or say ‘I told you’ or ‘I tell you’. She needs to see people that lead a normal live despite similar to her and worse problems. Medication and regular monitoring helps and is absolutely neccessary to avoid disability, pain, lack of energy and other nasty stuff that prevent you from having a normal live. You need to adjust yourself and the way you see things and not so much your life. I have three immunodeficiencies and get along fine. I look very healthy, have a teenage daughter, a full time job, eat and drink whatever I like (some things a little less than other) and have energy in a lot of things (badminton, gardening, any sea-sport, I built sheds/walls, whitewash, have some ‘artistic aspirations’, sew, cook and sell cosmetics in my free time. I don’t have time to sleep, so much fun there is in life. By the way, I am almost 50 and my first immunodeficiency struck at around 17 years old! CIDP doesn’t have her. She has this nasty bugger so she must first WANT to kick its butt!:)
    Good luck and keep on talking to her she loves you and perhaps you are the only one she can vent her anger on freely.

    #100480

    Lianne99
    Member

    Thank you Catherina, that is definetly a spirit boosting talk if ever I heard one. thank you so much!!! :D

    #100492

    MitziD
    Member

    You know she might like being connected with other CIDP’ERS There is a few sights on facebook she might get support from. “Living with CIDP” is a good one has all ages and all at different stages. I know it helps me believe that someday I may just have the upper hand with cidp. Also no one can lighten this load we carry then other people who carry the same load. Good luck to her and God Bless!

    #100660

    Beba
    Member

    What have you found to avoid the headaches? Mine are severe!

    [QUOTE=homeagain]That if she can find others ‘like her’? That she can connect with and understand better all the life things that are or can be affected by CIDP.
    We all would love to deny that we ‘have IT’? But we do, and must make the best of what we’ve got with what we have.
    If that means IVIG on some regular basis? Then DO it IF it works. I too have had an event of aseptic meningitis [in a hospital of all places] and I wouldn’t wish it on even my worst enemies. But I’ve had only ONE good AI bout over 8 years of infusions. Not bad overall considering?
    The infusions can be managed properly to avoid meningitis and pre-meds and other aspects such as ports can help avoid future pain and problems. But…it means, if it works? A lifelong commitment to getting any sort of short or long term relief. It’s plain and simple get the medicine help? or not and suffer. Should the latter be the choice? Please don’t complain to me? You have the options and while none are fun, your daughter must choose what is the best way for her… considering both the long and short term benefits and detriments.
    She is the one who must do the research and LEARN from it all. Then make her own choices. For good or not? They will be hers and hers alone to deal with. I truly hope she learns more and reconsiders.
    As we adults all do for the good, the bad, and the rest of it.
    There are many here who will be able to help her and not be shy about all the good and bad consequences of decision making. We all row in similar boats about this stuff. Hope and good things in the meantime![/QUOTE]

    #100661

    homeagain
    Member

    Beba- Do take a look at the top blue bar w/the down arrow and click on search – in the blank box… write in aseptic meningitis.
    Short and long of it is twofold: Hydrate like crazy then watch, learn, and KNOW your rates of infusion! Learn what you can tolerate – then settle for no faster or slower than what is comfortable. If pre-meds of Tylenol and or Benedryl are needed? Don’t skimp, the price paid afterwards can be dear and painful.
    Know what brand you are using and memorize what their suggested rates are, compare them to what is actually being done [my doc writes down the rates HE wants to administer at so there won't be any error] If problems still persist, talk long and hard with your doc… is it the brand?, that nurse?, that nursing service?, or premeds?
    I’ve also found that eating light meals 1-2 days before infusions along w/hydrating [often with one pint Gatorade the day before] helps keep headaches at bay. After infusions tho, I’m usually seriously hungry!
    To me, in a simplistic way? Infusions for CIDP’ers are like insulin for diabetics.
    Lianne? She must have it so, make the best of it! Yes, there are options such as steroids, but for one so young, the early threat of osteoporosis is NOT something one should look forward to, nor the possible weight gain?
    Also the stem cell trial recruitment is still going on, but that too, is something SHE should investigate and explore… It’s time to grow up the hard way, and like all of us this stuff is much harder to deal with than many medical issues. But it’s got to be learned about, the options, the warts and all. Only she now can make the ultimate decisions at this point. Let her learn and fly or not.
    Yes, it’s scary, but living with infusions is an inconvenience, yet a good one. I’ve met many fascinating people in infusion suites, some have become good friends and support for me, as I’ve tried to be for them. I wish the same for your daughter.
    Good luck to both of you and heaps of hugs and good things!

    #100667

    Beba
    Member

    I appreciate the information. Will get more information on my infusion rate. Already hydrating before and after and will add Gaterade to the mix. Since I just had treatment, it will be another 4 months before my next one. Fortunately, that is more than enough time to talk with my doctor again.

    At age 60, I have decided to will deal with the side effects, if necessary, but continue to educate myself and seek the council of those who have been in this longer than me. My doctor feels I have had the condition for over 20 years but did not see a serious impact until 4 years ago.

    Good wishes to all of you and thanks again for the support!

    #100678

    Lianne99
    Member

    Hi Homeagain,
    thank you so much for what you have written, I write everything down and her last infusion was by far the fastest drip… I will insist on a slower one I take everything down. weight, BP every 30 min, drip, if htey miss a bump up… everything, they are going to give her an IV of Fluids (forget which ones) to hydrate her b4 infusion on day 1… As for not going. She has confided in me that she did not want to ruin my vacation… go figure a 17 almost 18 year old wanting to delay so that I could go on vacation, nothing elaborate just a week in a loaned house out in the woods… she more than happy to get up at 6:30 on thursday and make the drive into the city… “I wish thursday woudl hurry up already”…We are talking and weighing all her options., She is looking into stem cell…. She is a freshman in college and is hopeful that she can keep her treatment schedule under wraps so no one knows she is sick… she has a whole plan on how to make this work for her…. She is going into medicine… Wants to make a difference in someones life like her MD did for her… go figure. I just feel so helpless sometimes and wonder if I am doing everything I can for her… I am ready to sell everything I own and quit my job to get her anything she needs. she is too young for this… I could write in here for hours, but will not… I am sure you have heard it all before….. I just feel so helpless. Thank you all for listening….

    #100685

    Beba
    Member

    I can not imagine dealing with this at such a young age, but she sounds like a very thoughtful and caring young person. Sometimes a tough situation can change a life for the better. Will keep you and your family in my prayers.

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