My old pal, senseless guilt

By Mir
July 10, 2009

I’m wondering if there’s ever a time when one of my children will have a problem I can’t seem to fix that it DOESN’T cause me to buckle under the weight of crushing guilt at my inefficacy.

Maybe when they’re 18? 20? 40??

(Don’t answer that. I suspect I won’t like the answer.)

So I thought we were doing everything right as regards Chickadee’s mysterious skin affliction; we followed the steroid shot with all of the dermatologist’s recommendations—stronger allergy meds, scent-free, chemical-free, additive-free shampoo, soap, and detergents, as well as an afternoon spent painting every metal stud and button on all of her pants with clear nail polish. And her skin cleared up with the steroid shot, and promptly began bubbling and rashing up as soon as the prednisone cleared her system.

In fact, her skin is STILL peeling from the after-healing of the first rash clearing… right on top of the new bumps that are forming underneath.

The good news is that the new dermatologist is good and kind and gentle but thorough; she is taking this seriously, not waving her hand at us as the allergist, previous dermatologist, and primary doctor have done. She is sweet with Chickadee and tells her she understands how miserable it is, and that she’s doing her best to get it figured out so that she can feel better.

The bad news is that although we’re all still calling it eczema, now a battery of tests as long as my arm have been ordered, and while some of them are targeted allergy tests—and we all still expect this will turn out to be some sort of allergy gone haywire—others of those tests are frightening to me because the other possibilities are things like chronic diseases. They’re just being thorough, I tell myself. They’re just making sure, I tell Chickadee.

This afternoon I will hold my daughter’s hand and more than likely hold her down as she has a biopsy of the rash. Just one item on the list; just ruling out a couple of the possibilities. The biopsy will get sent to Emory, the holy grail of medical knowledge ’round here. We’ll be able to check off those possibilities, and it’s all part of getting to the answer, and getting her feeling better.

After the biopsy she’ll go on another course of prednisone to clear her up enough that she can have the next round of allergy testing. The steroids make her crabby and snappy and make it hard for her to sleep. Right now there is nothing else that works, and so right now this is what we’ll do.

Eventually we’ll have some answers, and then we’ll be able to make her feel better (I hope), and I am (supposedly) doing everything right, so why do I feel so guilty?

(On the up side, I’m thinking ice cream after the biopsy. Right?)

52 Comments

  1. Gwen

    My baby girl, who is Chickie’s age, had to go on prednisone a couple weeks ago for a nasty case of poison ivy (on her face!) The last thing a pre-teen girl needs is something that makes them more moody, sleepless and edgy. So sorry Chickie is in for round two of that stuff on top of the other indignities of the testing. Sorry for mom too, and that it’s taking so long to get this sucker figured out. Lots of ice cream with yummy toppings…two scoops *and* a waffle cone perhaps?

  2. Ani

    hugs all around.

    and ice cream. definitely ice cream.

  3. annette

    If you get it in a cake cone…continued guilt. Waffle cones,however will clear up the skin irritation, make you guilt free and will, in general, make life perfect.

  4. Jennifer Joyner

    Ice cream fo sure. For mother and daughter!

  5. jennifer

    While I can’t say that I know entirely how you feel I think I can relate in my own little way. And the only thing I can say is that it is hard to know that you are doing everything in your power to make things better but to still feel like there is something else you should be doing. I’m sorry she’s having such a rough time. Hopefully the doc will get it all figured out soon!

  6. Aimee

    Poor Chickadee! I bet a double scoop in the container of her choice, maybe with sprinkles on top, will make everything seem a little less dire. I’ll keep my fingers crossed for a diagnosis of something simple that has a quick and easy cure.

  7. Jayne O.

    Mir, many years ago at the age of 10 I was put on Prednisone for one of those scary diseases. Since it was in the dark ages, they didn’t know it should be given for a short duration. 26 years later, after continuous use of various dosages, I finally was able to wean off Prednisone.

    Having been a child dealing with the side effects: moodiness, crankiness, lack of sleep, weight gain, puberty – I can tell you this. All she needs from her parents is love, support, comfort, understanding, and patience. That is what I remember all those years ago got me through the darkest of times.

    Blessing on you all.

  8. Jean

    Mir, you are doing an amazing job. I think motherhood just comes with guilt, a burden we will all bear even when our kids are 50!

    I feel so bad for Chickie, and I really hope they find out what’s going on. PS….a hot fudge sundae with everything sounds perfect for afterward!

  9. Amy-Go

    GAH. That sucks. I hope they get it figured out soon…and that the ice cream helps.

    Would a postcard from a friendly neighborhood Wilson boy help, you think, or just be embarassing? Your call…

  10. Crisanne

    Extra hugs for everyone in the Mir clan! And ice cream, for sure.

  11. liv

    absolutely ice cream. for both of you. being a mama is a hard job, and i think you’ll both need it.

  12. Heidi

    Yes, they’re just being thorough. Deep breaths and ice cream all around!

  13. Chuck

    Ice cream, definitely. I might even recommend splitting a banana split.

  14. Summer

    You ARE doing everything right. You didn’t back down when the first batch of doctors dismissed Chickadee’s complaint. You’ve found her a doctor who is willing to keep searching until she finds the problem, and you’ve shown that you’re more than willing to do whatever it takes to solve this.

    You are a wonderful mother.

    I recommend one of those ridiculously huge sundaes, preferably from an old-fashioned ice cream shop with booths and Tiffany-style pendant lamps, and two spoons.

  15. Megan

    Guilt is bitter – ice cream is a necessity not a luxury.

  16. Lucinda

    I’m so glad you understand what the prednisone is doing to her. I had to take it on and off for several years and it made me so emotional. I was frustrated by the complete lack of control I had over my anger. She is a lucky girl to have a family who understands how hard this is on her. I do pray she finds answers soon.

  17. highlyirritable

    I feel for you. I take it as a personal insult whenever one of my kids has something that I have no power to fix IMMEDIATELY. My son also has what we are calling excema, and while some days are better than others, anytime I catch a glimpse of his red patches I feel like I either didn’t breastfeeed him long enough, gave him solids too early, or failed to correctly influence planetary alignment.

  18. Heather

    Aw poor Chickie! :( Sounds like you’re doing everything right, and I’m glad you found a doc with a good bedside manner! I’d say ice cream is definitely in order (but then again, I say that when I stub my toe :P )

  19. Kate

    Ugh, I had mystery rashes as I started puberty all the time. I went through rounds and rounds of testing and was even sent to the Mayo Clinic in MN to see if they had any suggestions. I remember being on Prednisone and steroids very well. My grandma suggested that I soak in a cool bathtub with baking soda, it helped some of the itching go away as it wore off. We never did figure out what the rashes were from and at random times they come back (especially on my eye lids). This is odd, but I think that it might have something to do with nailpolish for me, I seem to have it more when I have been wearing (or picking) at it.

  20. Tracy

    Ice cream all the time…do we need a reason? I hope she feels better soon! And don’t feel guilty….you have nothing to be guilty about, right?

  21. Mom

    I have lived with that same senseless guilt all my life. If you learned it from me I am genuinely sorry. If you found it on your own I am just as sorry. Jettison that mind-muddling backbreaking peace defiler. It will never serve you well. Do what you do so deftly – nearly everything. Do not allow that useless, groundless emotion to torment you. Kill it in your head, your logical place.

    Love,
    Mom

  22. exile on mom street

    Ugh. So horrible for Chickie and for you.

    If they ever want you to go to Emory for tests, be sure to let me know. I’ll buy the ice cream.

  23. bridget

    A suggestion – if the rash IS caused by a nickel allergy, clear nail polish is often not enough to keep metal from touching the skin… you have to cover up all the grommets with denim patches. Hope the biopsy results are helpful!

  24. Jen

    Poor Chickie! As someone who first got psoriasis as a teen I can definitely sympathise! It’s not such a big deal now I’m all growed up but it sucked back then. No one offered me ice cream either, so I’m now feeling particularly hard done by… Steroid shots, on the other hand, just make me sickeningly chipper!!

  25. Damsel

    Poor Chickadee, and poor Mommy… You’re a GREAT mom for taking care of her! Hope she feels better and you get some answers soon.

    And ice cream ALWAYS helps. :-)

  26. Gaylin

    Doesn’t ice cream help everything?
    I have hive problems now and eczema when I was little. A nice soak in a warm bath with 2 cups (yes 2 CUPS) of natural apple cider vinegar followed by a shower with a safe soap will help take the redness and itchiness down.
    Neutrogena was a pretty safe soap for me when I had eczema as a kid.
    You are both pretty, eat ice cream and laugh if you can.

  27. Kemi

    Ice cream and a PEDICURE when she makes it through all the testing. :D

    (Aren’t I helpful?)

  28. MomCat

    Yep, definitely ice cream. Two scoops. And a waffle cone if she wants it.

    It’s a terrible feeling to know that your child has or might have a chronic disease or condition. I recently had to tell my young teen that, because of a congenital deformity, she’ll never get over her urinary incontinence. The questions were rough. Big issues for a child, lots of tears, and a pain in my heart, too. What doesn’t kill us…yadda yadda. How I hate proving that saying right.

  29. Katie in MA

    Definitely ice cream. I might even make an argument for a third scoop.

  30. ChristieNY

    poor mir and poor chickie – hugs and ice cream, most definitely. my 2 year old underwent testing for a bunch of scary diseases from a huge nasty rash all over his face, and was put on predinsone and several major antivirals that scared the crap out of me. it’s terrifying seeing your child so uncomfortable and not knowing how to “fix” it.

    please, let the guilt go, you have done everything right by fighting for her! hang in there and definitely, ice cream with lots of toppings. ;) ps: my son had a reaction to neosporin, he can only use bacitracin or bactroban now, and we changed docs since the previous one was a jerk about the whole situation, it was a dermotologist who figured out the cause.

    good luck sweetie, you’re an awesome mom!

  31. Ingrid

    Poor thing. So sorry she (and you) are going through this. Definitely ice cream after!

  32. 12tequilas

    I really feel the need to ditto the comments above that say you are doing everything right. It’s not something you can plainly see, but we WCS readers can, and we are all very smart. Right? (You’re so smart I feel confident in using the word “ditto,” because you will know what it means. Maybe that’s just an age thing, but I’m going with smart.)

  33. Flea

    This is SO encouraging. FINALLY – someone is taking this serious for you both, treating it the way they should. I know it’s scary, but congratulations on finding someone who knows what they’re doing! Good job, mom. You’re pretty, too!

  34. Cher

    Girl, my “baby” is 28, has a 4 y/o and another due in Nov. IT DOES NOT END. She currently has TYPHOID and can’t do anything because she’s preggers. I’m praying she doesn’t die in childbirth. So see? IT NEVER ENDS. So sorry to burst that bubble. (oh, and the fact she’s 8,000, yes, THOUSAND MILES away doesn’t help cause I can’t hold her while she’s puking and crying…I just get to listen to her sobbing on the phone….) Yes, I’m feeling sorry for her AND me today…good luck with yours….

  35. elizabeth

    Emory’s medical school is nationally respected. You’re in good hands. Love and prayers.

  36. radioactivetori

    I have been on prednisone and it makes me a cranky bitch with tons of energy. I empathize with Chicky (and your whole family). I will think good thoughts that this gets solved soon and she can feel better and that it turns out to be nothing serious.

  37. Kate Setzer Kamphausen

    So sorry, dear Mir. Praying for y’all.

  38. wafelenbak

    Well dang, everything I was going to say has been said. Hugs to Mir and Chicky, and as I was reading this, I was def. thinking 2 scoops in a waffle cone!

  39. Karishma

    oh, i feel for chickie. that endless litany of testing is NO FUN AT ALL, even when you don’t have a rash that’s actively making you miserable. extra hugs and kisses for her, plus some ice cream and a pedicure, for sure. hopefully this will all be figure out in the next round. also, listen to your mother, she seems very wise. :) you didn’t do this to her and you’re doing everything you possibly can to make her better…. you should feel damn proud of your motherly skills right now. not everyone would have wielded that bottle of nail polish, you know.

  40. The Mother

    Ice cream is the world’s best solution to biopsy. Followed closely by chicken soup.

  41. Cele

    My support and thoughts, gracious I hated being a teen. More ice cream please

  42. Amy

    This whole ongoing saga is breaking my heart. I feel completely terrible when my 3 year old hurts herself or gets sick in anyway. I think it will just crush me if I couldn’t fix it.

  43. Colleen

    Oh Mir..I don’t know why but reading this just brought tears to my eyes.. {{Big Hug}} for you and one for Chickie too!

    If it takes 18, 20 or 40 years..I’ll be here to remind you that you’re one awesome Mom!

  44. kath

    Ice cream and a treat from a fun store … two things, just because! Good luck, speedy healing and an “oh it’s easy to fix’ diagnosis.

  45. Sara

    Mir- Sucky, sucky times for you all but I just have to say, “You won the parent lottery!” Your dad’s comments are always funny and insightful and the mom one up there is so very, very lovely. So, Chickie is reaping what they sowed and y’all are the best family ever.

    Sara

  46. Sheila

    Hang in there.

    And, bumpy roads are always soothed by ice cream– and great moms.

  47. BethRD

    I’ve had serious eczema all my life, and occasionally it goes into overdrive for no apparent reason – no new soaps, no new perfumes, no new nothing, just me turning into a walking festering scab. And so far, every time, it has gotten better eventually on its own (helped by steroid creams and oral meds), as mysteriously as it got worse. I’m seriously hoping you figure out what is sending Chickadee’s system into an uproar, because that would give you both the most peace of mind, but if not, my backup hope is that it just gets better.

  48. Karen

    Well if you are going to feel guilty you might as well make it worth it. Crossing my fingers that you all get it figured out!

  49. CheshireKate

    You know we have been through a lot of skin related things in my house my husband has a chronic excema like thing and recently although they have not a clue to the cause we have had great luck with a medical light therapy. he goes in a stand up booth for seriously 1 minute 40 seconds and it has calmed down his skin amazingly. and then of course I just came down with shingles because isn’t that they way.

    Anyhow mopstly posting to wish you luck in both findinga cause AND alleviating the symptoms.

  50. stacey

    My son has a kidney condition which is controlled with prednisone and some other yucky medicines. He was on the prednisone at different doses for the last 4 years. I felt like I lost my sweet boy and gained a grumpy negative kid. It sucks. This summer is the first summer we have been off the damn stuff. God bless you both and I hope they figure it out soon. I ended up diagnosing my own kid by googling on the internet. I just typed in the symptoms. Good luck.

  51. mama speak

    You know what Mir, you are doing everything right & you shouldn’t feel guilty. It sounds like the doc you have it the one to get since she’s jumping thru the hoops to eliminate things and figure it out. When you know what it is then you can get worried about it, but until then don’t get your panties in a bunch over the tests, it’s protocol and it’s what a GOOD doc should do.

  52. Kelly

    You are a great mom and doing what can be done… so hard to not feel guilt though. Its just part of being a mom I think.

    Glad the doctor is not taking this lying down, and is being thorough – I’d rather do a bunch of tests all at once then try one thing, then another, then another…

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