Monday, May 16, 2011

This is My Heart Breaking

Petunia had a great day on Saturday. She was funny and playful, and on the go. She mastered the stairs on our little outdoor jungle gym, and slid down the slide all by herself- grinning and laughing her big belly laugh at the end.

On Sunday, she got sick again. She was clingy, and by the end of the day, she was whining, shivering, and just wanting to be held until the Tylenol kicked in and she was able to really go to sleep.

She wouldn't go down in her crib at bedtime, so I sat in my rocking chair, holding her and trying again to figure out what we should do.

Everyone agrees that Petunia's frequent fevers aren't just the normal routine for a day care kid. Something else is going on. But what? And what should we do?

Her core symptoms are remarkably consistent: a high fever, refusing to eat, a strong preference for cold milk, and red, inflamed tonsils. Around that core, there is variability: she may or may not have a runny nose or a cough, for instance. She's usually better in about three days, but one time, she was sick for a full week.

She's had throat cultures, which have always come back negative. But on the other hand, she generally is healthy when she's on antibiotics, so maybe there is some sort of persistent infection that is not showing up in the standard culture.

She's had her immune system checked (it is fine), her adenoids x-rayed (also fine), and blood drawn enough times that she now cries if she sees a nurse in a pink shirt (because that's what the technicians who draw blood wear).

We recently took her to an ear, nose and throat specialist, who prescribed another course of antibiotics (which we finished last Thursday) and decongestant (which knocked her out so strongly that we had to cut the dosage to one quarter of what was initially prescribed). Hubby took her back for the follow up today, and came back with the recommendation from the doctor that we could try a tonsillectomy.

I wasn't surprised by this, but I'm not sure I want to do it, either. There is evidence that this sort of problem with recurrent tonsillitis will resolve on its own with time- some doctors argue that we should just wait. But it might take until puberty for the problem to resolve on its own, and right now, puberty seems a long way away. On Sunday, as I sat there rocking my miserable little girl, I kept saying "we have to do something"- but is surgery really our only option?

We've considered getting a nanny and taking her out of day care- but since her fevers are so consistent, there is a good chance that this won't do any good. The problem could be in how her tonsils respond to germs, not in the number of germs she's being exposed to. And, as my husband points out, it is not like we'd be able to keep her in a bubble if we took her out of day care. Her older sister would still go to day care. We'd still go out and about on the weekends. She'd still run across germs. So we could disrupt her routine (she loves day care and is visibly excited to go back after having to stay home for a few days while sick) and increase our child care expenses and get nothing from it.

We could push for more antibiotics, or perhaps for the next line of antibiotics- so far, she's had nothing but amoxicillin (and augmentin, which is sort of like amoxicillin plus). I've read some interesting things recently about persistent bacterial infections. But since the throat cultures keep coming back negative, that might not do anything but upset her tummy. "Interesting" is a fine criteria for choosing which science papers to read, but it is not such a good criteria for choosing how to handle a sick kid.

Or we could do the surgery. It is fairly safe, but it is still surgery. There are risks. And even if all goes well, the post-op recovery sounds like it would be two solid weeks of hell in which Petunia wold have a very sore throat, probably wouldn't want to eat much, and we'd need to work hard to keep her hydrated. However, as my husband points out, that isn't all that different than what we have now. She's been sick three of the last six weeks, and when she's sick, she has a sore throat and won't eat much. Still, there is no guarantee that surgery would solve the problem, either.

So I'm a bit stuck. I know that we have to try something different for Petunia. The difference between Saturday and Sunday was too stark to leave me any doubt on that point, but I really have no idea what we should do. I don't like any of our options.

26 comments:

  1. Surgery is surgery - it is a big deal in anyone's book, but I thought that you might like to hear something positive about it - even though I don't really want you to think I am trying to talk you into it.

    My daughter kept getting recurring tonsillitis, many times a year. Eventually we ended up with her having surgery, and her tonsils and adenoids were removed.

    Her recovery (at 6 years of age) was extremely quick, and after the first day she was really happy. She went from being sick lots of the time, to not sick with anything for the 10 months after the surgery, with anything. It seemed like her tonsils really were making it easier for her to catch anything that was going around.

    I think the descriptions you have been given of recovery from this particular surgery are a bit exaggerated. My understanding is that for adults it can take a long while to recover,but not so much for kids.

    That being said, it sounds like there is no clear diagnosis, so other factors are at play for your decision making. Good Luck.

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  2. My childhood situation isn't like your little one's -- I got strep throat every summer with recurrent other tonsil infections, and when I was finally taken to the ENT he asked "How do you BREATHE with those things?!" and scheduled me for surgery asap -- but. I was in grade five when I got my tonsils out. I was out of school for a couple weeks but well enough to enjoy it and go outside to play a lot. The worst part of it for me was the orange-flavored liquid medication I had to take.

    Still can't stand fake orange flavor.

    I was reluctant to talk for a while but that cleared up pretty quickly too as I recall. It certainly wasn't two weeks of solid hell.

    At least not for me. Can't speak for my mother, who had to make me take the hated orange goo.

    I'm not trying to talk you into it either. I just so sympathize with a kidlet feeling rotten periodically. :( But I'm sure you'll do everything you can to fix that, whatever option or options you decide are the best.

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  3. Poor you, it's those kinds of times I just think this motherhood thing is too hard, too painful, why did I ever decide to do this?

    For what it's worth I had my tonsils out as a little girl - we lived in Iraq at the time and the hospitals there had no-one to observe you in recovery, it was my mother's job to do that, she was freaking out with the responsibility, and then they handed her my tonsils, still warm. She almost died.

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  4. Poor you indeed, what a hard situation to be in. The hardest part for me would be not knowing for sure if the surgery would actually help. Would it help to discuss it more with the doctor? Or even see another doctor, to better understand the risks and potential for the surgery, and possible other options? Good luck!

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  5. I'm vaguely remembering on a mommy forum that someone had a similar problem and cut out milk and all milk products, and it turned out the child had a mild allergy that kept the environment ripe for infections, especially ear and congestion.

    That's totally unscientific and it's been a few years, but maybe you could visit an allergist before deciding on surgery.

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  6. I've got no advice - just sympathy. The uncertainty about the best option (surgery/ change in childcare/ waiting it out/ stronger antibiotics...) must suck. None of sounds awesome or like it will certainly provide a better outcome...

    (on a side note, Moo has a real aversion to stethoscopes, despite her Daddy's best efforts to make it seem less threatening by trying to get her to play with his. I'm not sure our dog really appreciated being 'examined' in an effort to make it so Moo didn't cry at the sight of it!)

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  7. I'm sure you've checked everything out, but just in case - Petunia's symptoms sound remarkably like mine over this past winter, and I ended up having a chronic sinus infection. Antibiotics kept working in the short term but symptoms would come back within a week every time I finished a dose. Doctor finally switched me to some kind of horse pill antibiotics and that worked. I don't know the name of them, but she said they were the strongest she could recommend while I was still breastfeeding.

    Poor Petunia, and poor you! Not an easy decision to make.

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  8. Sorry to hear she's sick again. I'm no help other than to add my support and to say that you shouldnt feel too guilty about it. These days medical decisions seem to involve so much more of the patient's choice, I think in the past there may not have been a choice, her tonsils would have been whipped out without anyone asking what you thought.

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  9. sorry to hear you (and Petunia) are going through all this. Day-care really is a nightmare for some kids ( and thier parents). True, though, she will eventually have to buidl her immune system, so is it better to do it now or later. I don't have any advise though, just some cyber-hugs.

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  10. Anonymous11:42 AM

    I'm so sorry - nothing worse than a sick kid with no obvious solution..... Maybe a nanny will do more good than you think.
    My own little one just started daycare and has had 4 fevers in the first 4 weeks. He never had a fever prior to daycare, so we're starting to get worried about his situation. what's 'normal' when it comes to illnesses from daycare?
    Annie

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  11. Thanks, everyone. Your comments/stories are helping. I think my hesitation with the surgery stems in large part from the fact that she is still so little- she's not going to understand what is going on.

    @Annie- we didn't think anything was unusual until Petunia kept getting sick 6 months after she started day care. In fact, this problem didn't start until she was about 9 months old- she'd been in day care by that time for 4 months with the usual run of fevers, runny noses, etc. What is weird here is that it is not one illness after another, but the same illness over and over.

    I've heard the milk allergy theory, too, @nicoleandmaggie- but I think the problem actually started before we introduced cow's milk.

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  12. Postdoc12:58 PM

    This is probably a long shot, since I don't know any of the specifics of her fevers, but has she had any sort of cat exposure? Cat scratch fever - ie, a bartonella infection - comes with high persistent fevers, which is why I ask. I'm actually battling this currently - it's pretty rare among adults but much more common in children, and doesn't show up in bacterial cultures because it's hard to grow, though titer tests can confirm it, and it responds to antibiotics. I don't know if it affects tonsils though. Doctors had no explanation for my high persistent fevers, until a friend of mine asked me about cat scratch disease, and it was confirmed by a blood test - so I just wanted to mention it. Best of luck!!

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  13. That sounds just miserable :( I had tonsillitis 2-3 times a year as a little kid and finally had my tonsils taken out at age 6. I remember it being miserable when I woke up and my throat hurt. But the nurses got my parents into the post-op room to calm me down. After that, my recollections are isolated to ice cream, movies, and being waited on hand and foot, and I haven't had tonsillitis since.

    We're facing a somewhat similar decision of whether or not we should get tubes for Monkey. We're leaning toward getting them, but that procedure is nowhere near as invasive as a tonsillectomy. And you're right that there's no guarantee either will fix their problems. But I figure if antibiotics keep working, yet the infection keeps coming back, taking away the source of the problem should work.

    It still scares the crap out of me, though. ((((hugs))))

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  14. Oh, this all sounds so horrible. Poor little one!

    FWIW, 2 stories. First, my kiddo had to be put on a different antibiotic after he had an apparent reaction to amox. It gave him a little yeast rash, but no stomach problems at all. Anyway, that antibiotic finally knocked out the sinus infection/ear infection/hellonearth-itis that had plagued him for 2 months. Obviously, this may not be the case for Petunia, and your mileage may vary, but might be worth thinking about.

    2nd. I had my tonsils and adenoids out when I was about 4ish. I clearly recall driving my mom batty by day 4 to get up and run around. So the two week recovery may be a doctor overestimation.

    Whatever you decide, I hope that Petunia feels better soon. It's so hard to watch your kid be sick!

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  15. Cloud-- were you drinking/eating milk/caesin products when nursing? Also, milk isn't the only allergy that there is. It might be worth talking to an allergist about... specialists often have insights that generalists don't.

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  16. Anonymous2:25 PM

    SarcastiCarrie said:

    Since surgery is surgery, I would investigate a few more things before you get to surgery, but that's just how I roll. You might roll some other way.

    Bobo was *sick* at day care and ear tubes did not help, but they did show us that whatever he had, he couldn't go to day care. I feel bad now that I had him get surgery that didn't actually do anything. That's the worst part.

    Bobo couldn't take the amoxicillin (purple splotches over his whole body) and developed the strep pneumo infection while on azythromycin (?) so he was an omnicef kid. You might want to try it. It's pretty potent (may I also recommend probiotics while on it and ask for the once daily dosing because it's easier on the tummy?).

    I have had one of my kids allergy tested. That's wasn't terrible, but the pricks on your baby's back look awful. And you feel terrible having done it. Also, casein intolerance doesn't show up on allergy tests because it's not an allergy, but we did/do have that in our house. The kids grow out of it (eventually). You could switch her to soy milk and see if it helps. It can't hurt really. If you make it super yummy vanilla soy milk (she desrves treats!) she'll probably not mind too much (and if it works, you can always wean off of the sugar-sweetened stuff slowly onto plain).

    It's a lot of stuff to try. You might want to throw it all at her and see what sticks.

    As an aside, if you were paying for a nanny, why would you keep Pumpkin in day care? And when Bobo was pulled from day care (on a Wednesday in the middle of a work week), we went full bubble boy for about 6 weeks while he reocevered. We also pulled his brother from day care so he wouldn't be bringing stuff home for the first several months (he goes to kindergarten now so brings home things, but during the recovery and strengthening phase, they both stayed home).

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  17. @SarcastiCarrie- I think Pumpkin's heart would break if I took her out of her "school"- I couldn't do that to her unless we had a medical emergency. Which we don't. I don't even think we have a situation as concerning as what you went through with Bobo.

    For one thing, it is not like she's catching all sorts of different things. She just keeps getting what is probably tonsillitis. She's actually had far fewer bouts with tummy bugs than her sister did (I am knocking on wood as I write that).

    The allergy/intolerance thing is something we may investigate. The immunologist she saw was also an allergist, and he didn't think there were any allergies present- but it is hard to tell at this young age.

    One of the advantages of my work environment is that I'm surrounded by other scientists who know more than I do about some things- like tonsils. I got an explanation from someone today about why persistent tonsillitis can develop (for one thing, there is relatively poor perfusion of blood into tonsils, so it is hard to get antibiotics in) which helped a lot.

    Still, no decision has been made. We're still researching and discussing.

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  18. Not that you need any more advice here after 16 comments worth, but... similar to Jac, my sister had chronic sinusitis. It started as an infant (I can't remember what age exactly, I was 7) and she had the same thing - persistent, sudden fevers that last a few days to a week. She was just ALWAYS sick, for her entire early childhood. She went undiagnosed until she was 7 or 8, and by then the chronic infections had stunted the growth and development of her sinuses. Now as an adult, her sinus cavities are the size of a child's and she still battles chronic infections because of it.

    From what I remember, the sign of a sinus infection for her was that her eyes appear smaller, like they're set deeper in slightly. Not sure why, but once my mom figured out what was going on and what to look for, she'd zip her right into the ENT as soon as her eyes looked ever so slightly smaller than they should.

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  19. We had milk-protein "allergy" too. And because I breastfed, we didn't realize that he was getting it before we officially introduced dairy. To resolve the issue we had to COMPLETELY eliminate dairy, which was tough because it is in everything. Buy holy cow what a difference it made. Before surgery, I'd definitely consider it.

    Oh, and the craving for milk would be a red flag, IMO. Apparently, it's common for children (and some adults) to crave an allergen because it causes their bodies to release endorphins (I think it's endorphins - what's the other feel-good chemical?) to combat the damage being done by the allergen. Nasty feed-back loop.

    Regardless, I hope you figure it out and whatever you do, you're doing the best you can with the information you have. That's all anyone can ask for.

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  20. the milliner6:08 PM

    Just wanted to add my sympathies. Such a hard situation. Also, wanted to share what I do when I'm facing a tough decision where the outcomes are uncertain. Essentially I create a spreadsheet with all of the factors of the decision on the left. Each factor is given a score out of 10 in importance. Then I rate each solution based on these factors. So, the factor 'recovery time' may have a weight of 9/10. And for 'surgery', the score is 3/10 for a short recovery, and 'doing nothing' is an 8/10 for a fast recovery, etc. Then yoy multiply it out, so surgery recovery time has a score of 27 (9x3), etc.When you do this for all your
    factors for each solution, you get a total score per solution.

    Sometimes the difference in results is obvious. But usually the result is that seeing a black and white score enables me to see everything more clearly (weather I end up agreeing with the numerical evaluation or not).

    Hope Petunia feels better soon and that you fond some peace in whatever decision you make.

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  21. Oh, Cloud... hugs to you and yours. This sucks big time. You've already gotten some wise counsel re: seeking a 2nd ENT opinion, and doing some allergy testing.

    I want to share with you my own perspective that young children usually recover from surgery remarkably quickly - and much more easily, in my experiences anyway, than adolescents and adults do. As someone who has had surgery under GA before (though not the one your ENT is proposing, and not a c-section), I want to reassure you that you don't remember much, and if you stay on top of the meds, it is really not painful (and I'm not good with any type of pain). I know you're also concerned about Petunia being to young to be able to understand what would be happening to her - rest assured due to the GA she would perceive very little of the goings-on, and she would have a small window of opportunity to be confused/frightened by any of it. Should you need to go the surgical route, I hope this perspective helps a little bit.

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  22. My heart is breaking for you!!!This must be so tough to go through.

    Though my son didn't spit up much, he throws up whenever he gets sick, no matter what he's sick with. I don't think that a fever is the same, so there is probably some underlying cause that is hard to determine. For us, I just finally accepted that when the Pookie is sick, he's going to throw up. We just have to be prepared and keep the Resolve handy.

    I remember what it was like when my Pumpkin had ear infection after ear infection. She kept getting sick and was in pain and it was completely heartbreaking, especially when there are no simple answers.

    You may remember that we did end up getting the Pumpkin's adenoids removed last fall. She was three and a half, so she was a bit older and able to understand a little bit, but even then she was so young and didn't really "get" it. But last fall and winter and into this spring, she has not had one ear infection, even though she's gotten sick in the same ways that always resulted in an ear infection previously. That made the surgery (and her long recovery, which was not typical) worth it.

    But we decided to go through with the surgery for her when we were finally at the point that we felt we had to try SOMETHING! Even if it didn't help, at least we tried something. You seem at that point too, and you've got different options to try from other comments.

    I'm just going to end this by saying that no matter what you do, I'm so positive that Petunia knows she's loved and knows that her family want her to be healthy and happy. Even at her age, I'm sure she knows that in that unconscious way that children know. You are a good mom and you care so much about your kids. Whatever you decide to do, you'll do it with love. Good luck! And feel free to email me about the surgery and recovery, although we only removed the adenoids, I think going through surgery is similar.

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  23. My hearts breaks for you at the image of you rocking Petunia and worrying about what to do.

    She is so loved and whatever you decide to do it will be ok in the end.

    I think little ones are surprisingly resilient. When she was 12 months old, my daughter cut her finger badly (through a major tendon and knicked the bone) on a tiny crack in a mirror (?!) and needed reconstructive surgery under general anaesthetic.

    The injury and day spent waiting at the hospital with a seriously injured baby was absolutely horrendous but the recovery was surprisingly manageable.

    I'm at the opposite end of Petunia as I get throat infections quite often and the doctor mentioned to me recently about considering having my tonsils removed. I sort of wish I'd them removed when I was younger!

    The bottom line is that Petunia has a loving and devoted family who will work it out in the end.

    I'm thinking of you.

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  24. Kristin9:09 AM

    When I was 5 or 6, I had tonsillitis all the time. I got tested for allergies and got allergy shots and stopped getting tonsillitis. Apparently chronic tonsillitis can be the result of allergies. I didn't have any food allergies, just the usual mold, dust, cats, etc. I haven't actually looked at the literature to see how frequent that it is, but it was strongly correlative for me.

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  25. I just read this post aloud to my husband, who is pediatric infectious diseases specialist. He wonders if it might be auto-inflammatory disease called periodic aphthous ulcer pharangitis adenopathy (PFAPA), also known as "Marshalls syndrome." Unfortunately, the treatment is still removal of the tonsils, although it can resolve on it's own over some years. Perhaps this is what your doctor is suspecting anyway?

    Regardless, I'm so sorry to hear that you and Petunia are going through this. I hope she feels better soon--and I know you and your husband will make the best decision you can.

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  26. Thank you, everyone. Really. Thank you. It is nice knowing that you all care enough to take the time to comment.

    @the bean-mom, I would actually be happy with a definitive diagnosis- or even a fairly firm guess, even if the treatment is a tonsillectomy. The idea of surgery because it might help and probably won't hurt is hard for me, particularly given the current thinking that many tonsillectomies are unnecessary. But a tonsillectomy because we suspect a specific problem? That is easier to take. So thanks for the comment. I'll go read up on that now, in preparation for our appointment with a pediatric infectious disease expert next week.

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