Dealing with the fear

Discussion in 'General Parenting' started by tiredmommy, Oct 11, 2011.

  1. tiredmommy

    tiredmommy Site Moderator

    I know we all worry about our kids; all parents do but I think the parents of difficult children have a corner on the market. I've pretty much accepted that Duckie's future, ultimately, is in her own hands and all I can do is guide and support her along the way. It seems to be working so far but she's only ten.

    I do worry, however, about losing her. Her allergies and asthma keep me worried. She had an allergic reaction a few weeks ago that was downright terrifying and then I found out last week that her epipen hadn't been travelling with her on the school bus. I find that I feel an incredible amount of fear that she's going to go into anaphylaxis or even have a severe asthma attack and not survive. I know many of our parents with mood disordered children fear not only for their kids' future but also fear the high incidence of suicide among this group of teens and young adults.

    How do I learn to cope? I've gained weight, lost countless nights of sleep and have caused hundreds (maybe thousands) of dollars of dental problems by grinding my teeth. It's not a continual thing, just tied to Duckie's medical episodes. I've tried saying the serenity prayer, working out, taking "me" time, etc.... and yet I'm pulled right back every time she's at risk. I think it's normal to be stressed in the moment or just after, but it seems to take me several days to feel relaxed. Her health isn't going to miraculously improve markedly any time soon.
     
  2. InsaneCdn

    InsaneCdn Well-Known Member

    This isn't a difficult child issue. Its a "medically-at-risk" issue.

    On this kind of stuff, parents of diabetic kids face the same challenges - and that's just one of the medical issues out there.

    How do you keep them alive long enough to grow up and mature?

    I wish I had the answers...

    Is there a support group around for parents of medically challenging kids?
     
  3. gcvmom

    gcvmom Here we go again!

    Have you thought about taking time for a therapist for a few weeks for yourself? I've found just being able to voice my anxieties with someone like that can go a long way for helping me feel more in control of a situation that doesn't always afford it to me. And you know about all the medical garbage I've dealt with in the past few years!
     
  4. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I was going to suggest a therapist who deals with not post traumatic stress disorder but ongoing traumatic stress disorder. Your source of stress isnt going away in the near future. I think that may help. I can sympathize but I have never had a child who I was afraid could die and I really thank god for that. I do worry about myself because of all the medications Im on and what would happen should I end up running out for some reason.

    You have every reason to worry about Ducky but every year she gets closer to the time that she will be able to take control of her own health. As you said in another post, the doctor will allow her to self carry her own pen at 12. That should ease your mind a bit because I do believe Ducky will be well trained by you on what to do in an emergency. I think you are a great mom who will train her to be an excellent self advocate. I truly believe she will know everything. If something happens she will be able to handle it.

    you have done so well this far, I have no doubt you will continue to do well. You have always been one of my heros.
     
  5. slsh

    slsh member since 1999

    TM - Many gentle hugs to you.

    In my experience, it's an ongoing process. In Boo's first decade, I was blissfully ignorant of so much. When he started with- the seizures, I started researching not only epilepsy, but also prognosis for folks with- CP as severe as his. Statistically, it's very poor. I carry the fear in my heart 24/7. It could take only 1 status seizure, or 1 episode of pneumonia or sepsis or ... whatever. I feel the full weight of this daily because it falls on my shoulders to catch subtle signs that something is wrong with him since he cannot tell us when he's feeling poorly. And then it's on my shoulders again to ensure that medical professionals fully work him up if my radar is blaring. And *then* I have to try to maintain some objectivity and not let my terror of losing him override what is reasonable evaluation and treatment. I don't want to further disable him just because I would feel most comfortable with him hooked up to telemetry 24/7. ;)

    For me, it's something I've made as much peace with- as I'm going to - but it's taken a dozen or more years. Most days are okay, but then Boo is ridiculously healthy under the circumstances (knock wood). I've got a good team of doctors. caring for him. I've done everything in my power to ensure that he's healthy, and I've mapped out in my head every contingency I can for if/when things go bad. There is nothing more I can do.

    I don't talk with- anyone about this, just as I really didn't talk about my worst fears when thank you was heavily into drugs and homeless. husband is a glass half full kind of guy, as well as someone who adamantly refuses to worry about things he has no control of. Pretty much the opposite of me, LOL.

    I guess it boils down to there are no guarantees, for any of us. Bad stuff happens every minute of every day. Maybe statistically Duckie and Boo have a higher chance of something bad happening today, but.... statistics are meaningless in any single situation. I remember my euphoria when the NICU doctors told us that since the twins made it thru the first 24 hours, they had an 80% chance of survival. 80% - who wouldn't be happy with- those odds? When Ellen died 8 hours later, I was not only devastated, but I felt like I had been lied to. It changed my whole way of thinking - may be dark or morbid, but I figure we all have a 50-50 chance of getting thru the day. Either we do, or we don't.

    You do everything in your power to ensure Duckie is safe, that every possible scenario is covered, and then you have to put your faith in God or fate or whatever. And you work daily on finding a balance with your fear - fear is good, it forces us to be proactive, but you have to find a way to not let it control your (and Duckie's) life on a daily basis. Some days it will, and that's okay I think, normal... you just have to not let it control *every* day.

    Again, many many gentle hugs to you.

    ETA: I don't know how you deal (in a mentally healthy way) with- the near-paralyzing fear when she's had one of her episodes. I'm the same way with- Boo. I pretty much just grit my teeth, get thru the crisis, make sure *he's* okay, and then it probably takes several more days of crying and ridiculous over-protectiveness of him to get back to my usual baseline. Fortunately he tolerates me.
     
  6. Wiped Out

    Wiped Out Well-Known Member Staff Member

    TM-Wish I knew what would help for sure. Sue said things very eloquently and I think the others had a good idea in seeking some professional help. I just wanted to let you know that you have my prayers as I know how very hard this must be for you. Gentle hugs being sent your way.
     
  7. confuzzled

    confuzzled Member

    sue did say it very eloquently.

    how do you learn to stop worrying? thats the million dollar question...in my opinion, you don't. you just learn to cope with it.

    how do you learn to cope? you take it one day at a time. appreciate each one. you have to just know you are doing all you can, and stay in the here and now. worrying about the "what ifs" won't help her OR you.

    susie is also right--the incidence level of PTSD among parents of medically challenged kids is high. probably *much* higher than documented, because most of us just muddle through and dont seek treatment. and we really should--whether its a support group, medications, therapy, whatever.

    (i'm diagnosis'd with PTSD due to difficult child 1, but other than the occasional xanax, dont do much about it--there is no one locally that i'd trust to do EMDR on me. but i'm very intrigued over this ongoing traumatic stress disorder...never heard of it before now, don't know the critera, but is my picture next to the diagnosis?!).

    none of us know what will happen tomorrow, let along 25 years from now. if you are ruminating over it, medications DO help quiet that long-playing loop in your head.

    i missed the reasoning behind waiting til 12 to carry her own pen, but one proactive thing i'd do is revisit that with her doctor immediately if shes that anaphalatic. she really needs to have it on her person at all times.
    i'm assuming she has enough of a history of it that she knows the drill and for a myriad of reasons, cant see why she wouldnt be capable of self injecting. (i'd still have epi-pens in all the places you already have them--school, bus, home, whereever). that tiny thing alone might make *YOU* feel a bit safer--its really an important self help skill that she should start developing asap. i presume she uses her own inhaler when she needs to right? no real difference between the two things.

    that being said, obviously, in case she panics, each and every person that comes in contact with her or supervises her needs to be trained and have a pen available--adults panic...i wouldnt expect a 10 year old to be the *only* person that knows how to use it (bet me she's be the last to panic).

    but (((HUGS))).

    its all easier said than done.
     
  8. tiredmommy

    tiredmommy Site Moderator

    Thanks everyone... I think I just need to find a sense of acceptance so I can live with this. The worst (or best, really) thing is that she looks perfectly normal... until something goes wrong. I don't want to limit her for those few times a year that things get dicey. That's not fair to Duckie and robs her of her potential. And also, the fact that testing has not revealed the source of her most severe reactions is incredibly stressful. I've started to think of her having a threshold for typical allergies and she shows signs of anaphylaxis once the threshold is past whereas other people have severe reactions to a specific thing or things: peanuts, bees, shellfish, etc. She apparently isn't allergic to the most common allergens that cause severe reactions. So, I have to watch her like a hawk for signs that her symptoms are worsening.

    I know a mom who has a daughter that is severely allergic to peanuts and tree nuts. I mean, severely. She said that she wouldn't trade places with me because at least she knows what to avoid and Duckie is a ticking time bomb. And Duckie's school nurse asked me how we had managed to avoid using an epipen... I said I immediately dose her with benadryl when she has anything more than a minor reaction... we don't play wait and see if my gut tells me something is brewing. She agrees with me too... She saw Duckie come in last week with a tiny little hive on her lower throat. She worked with a few other kids that were there before Duckie and they exploded to cover her throat and spread onto her chin withing about 5 minutes time. Needless to say, I got a call that she had dosed Duckie with benadryl.

    Sorry for the rambling this morning.
     
  9. confuzzled

    confuzzled Member

    (this has nothing to do with this thread!)

    TM--i meant to mention this elsewhere by forgot all about it. i remember you mentioning D uses figets. do a search for "worry rings" or "spinner rings" and see if you think they'd meet her needs. i never heard of them before, but i bought them for difficult child 2, and it was almost a game changer--its age appropriate and very subtle. bypass any "kiddie" ones as they were cheesy in real life and would probably break in a minute.

    i bought a simple stainless steel band with a girly motif. it was well under $20. they can be as simple or as elaborate as you want...there was quite a bit to choose from. oh, and mine is *NOT* a jewelry girl--she not only wears it constantly, but she uses it constantly.

    just wanted to mention it!

    it was the best money i ever spent.
     
  10. tiredmommy

    tiredmommy Site Moderator

    Thank you!
     
  11. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    As you know SO has had problems with his breathing and severe osteo - oh, for about 15 years now. When he had these episodes, almost every other week, turning blue It put me on my knees. I developed, and this is going to sound so weird, another personality who came out to deal with calling the ambulance, answering questions, telling them what he does and does not need - that person was cool, calm, so together till after the ambulance left and that person went away immediately and I fell apart with a panic attack. I have a case of PTSD to this day, if he has gone to the store or somewhere local, and I hear an ambulance, I get a panic attack. When Danny was going thru his major difficult child episodes at the same time, any police siren or helicopter, panic attack. Honestly, they will to this day call me and say "Those sirens, they are not for me" if they hear them as they have both seen how I can get, hyperventelating, pacing, wringing my hands, running to the bathroom.

    I just have to keep telling myself this is out of my control and try and calm myself down. I did take medications briefly, but HATED them, I was feeling like there was a blanket over me keeping me calm, but underneath I could still feel panic bubbling.

    Its hard to get out of a hyper viligent state - its taken years and less episodes for him to get me closer to an even keel. It helps for me to keep my mind focused on something else which is why my job has been a life saver for me.

    Marcie
     
  12. STRESSEDTOMAX

    STRESSEDTOMAX Member

    I am so sorry that you have to deal with this. I worry constantly about my difficult child but the only PHYSICAL vworry I have right now is his increasing weight gain. Small potatoes compared to what you have. My main worries are his future, keeping him out of the system, and keeping him home. I wish I could offer some advice. I just want you to know that you're not alone.
     
  13. CrazyinVA

    CrazyinVA Well-Known Member Staff Member

    This isn't easy. I tend to put both my girls' health problems out of my mind until a crisis arises, and then I have a bit of a ptsd reaction. I worry about Oldest in particular because she virtually ignores her Crohn's and her ostomy care, and one day I fear it will kill her. All I can say is that I've become an expert at putting my head in the sand about all of it. Not the healthiest way to deal with it, but it's how I've coped. But, they're adults now. When Oldest was younger and in and out of hospitals constantly, well.. I didn't cope with it well then either... I just survived.

    So I guess I really have no advice, just understanding. Hugs.
     
  14. buddy

    buddy New Member

    You are right I believe, when you say we all worry but those of use with difficult child's worry probably more, differently, whatever...it has its own flavor. Add to a difficult child kid physical issues and it can be overwhelming at times. I know my brain compartmentalizes. I am someone who is cool under pressure in an emergency and then falls apart after too. I dont ever have panic attacks but I do think lately I have had some anxiety attacks, causing physical symptoms....of course there are always the heart pounding moments when the phone rings, even that stinks.

    I have a friend who has a difficult child who has a genetic disorder and serious physical issues including recently finding out that his o2 stats go down as soon as he lies down at night. this kid has not been sleeping well for years, seizures, etc...and now they see that he is waking because he is not getting air---and it is not just the seizures. I know she is on some online groups and i will not only invite her here (he is quite a behavioral handful too) but will ask her if she has any connection to groups to handle the stress of the physical illness. My difficult child has spurts of issues physically, I dont worry for him dying but how it affects him in relation to his other issues.

    big hugs....
     
  15. InsaneCdn

    InsaneCdn Well-Known Member

    TM - the teeth-grinding thing? the dentist suggested having some "classic" beef jerky (solid meat, not the ground stuff) around... even a small piece takes like forever to chew, but its a lot easier on the teeth than grinding.
     
  16. tiredmommy

    tiredmommy Site Moderator

    I want to thank everyone that has responded. This thread has been rather cathartic for me because it's been so hard to put my fear of losing her into words. And it really helps to know I'm not the only one that is or has gone through this. I fell asleep on the couch last night and had the first really good night of sleep in several days. I feel much more peaceful.
     
  17. SearchingForRainbows

    SearchingForRainbows Active Member

    When difficult child 2 was four years old, he collapsed and was unconscious. I rode with him in the ambulance, holding his hand, more scared than I ever thought I could be. He was diagnosed with absent seizures, took Depakote for several years, and outgrew them.

    It took me weeks to calm down after this incident. I couldn't sleep, was shaky, always going into his room to make sure he was breathing, never wanting to let him out of my sight, worrying about him at preschool, etc... I was a mess!

    Aside from almost losing him at birth, this is the closest I've ever come to experiencing what you experience on a continual basis. I'll never forget that total feeling of panic. I can only imagine what it must be like for you to feel this all encompassing type of fear so often...

    I don't have anything to add to the advice the others have given you. Just want you to know I'm thinking of you... Glad you finally got some much needed rest! Hugs... SFR
     
  18. Methuselah

    Methuselah New Member

    Hi TiredMommy. As a parent of a difficult child with Type 1 diabetes, I understand your fear. Unfortunately, in my case, my difficult child deliberately puts her life in jeopardy; it is her weird covert aggressive way of giving our family "the bird". I'm exhausted from keeping her alive. I check her blood sugar at 3:00 am every morning, because I fear I will find her dead in bed. :-/

    When she was your daughter's age, I let everyone know...her teachers, school bus drivers, table mates in class, friends, friends parents, etc. know the signs when something is wrong and what to do. Someone online, I'm sure, has created educational handouts for allergic reactions and epi pens. Print them out and then distribute them. I would stock pile epi pens and Benedryl to distribute, too.

    I understand your worry. I hope as she grows older she will take on more of the responsibility of monitoring her environment and what she ingests, so your worry may ease. But you are a mother who loves her daughter, and we always worry. :)
     
  19. tiredmommy

    tiredmommy Site Moderator

    Thank you again everyone for sharing your situations. It's good to know I'm not alone but incredibly sad that so many of us have been or are in similar circumstances. :(

    I have an update of sorts. Duckie went for a RAST test for latex/kiwi/avocado/bananas last week and I have partial results: Duckie is NOT allergic to latex (the others results are not in yet). This is good news because latex can be an incredibly difficult allergy to manage. But... we are also back to square one as to what causes these mysterious reactions. :(

    On a brighter note; the principal, school office secretary and I finally seem to have hit upon a way to ensure that Duckie will not ride the bus without the epipen and creates a sense of accountability in the monitor. The monitor (and any substitute) must show Duckie the epipen when she is getting on the bus in the morning and afternoon. If they don't have the pen or refuse to show it then Duckie will get off the bus and return to the house or to the school office. This way, either the school or myself knows immediately that there is a problem. And, this piece is being added to her emergency plan and she will be given a copy to carry in her school binder to show any substitute that questions the policy (the bus driver knows too but if he has a sub...).

    I hate that it comes down to my 10 year ODD kid questioning the ability of an adult to her job, but this monitor just doesn't understand the importance of the pen being there.
     
  20. KTMom91

    KTMom91 Well-Known Member

    It just amazes me that the subs Duckie's having don't seem concerned about the epipen! The first time I was informed about one, I went to the school nurse to get all the details I might need. Now, after subbing so long, when a teacher leaves instructions or a kid tells me, I make sure I know where it's kept just in case. I've never had to use one (knock wood and Thank God) but at least I know what to do now. They don't cover this in teacher ed classes, so I guess they wouldn't cover it in bus driving classes either.
     
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