Not sure where to post this? — The Bump
Special Needs

Not sure where to post this?

Hello all-

Happy Monday.  We are doing better, as DD was sick starting Friday morning again.  She woke up with a 101 fever, and it went to 103 by lunch, and kinda stayed around that (102-103 range despite Tylenol suppositories) until it broke on Sat night.  So, not super long, but the high temp always gets me.  My DH took her in to the Ped on Sat morning (we are lucky enough that they are open Sat mornings) and they ran a blood count and all came back normal.  They said if she isn't better by Monday, Ped would order a chest X ray (She is gunky too).  Which, would be her 3rd chest X ray in a year.  Sigh.  But, thank goodness, she is doing better. 

Here is my ?:  I told my boss this on Saturday (we had a meeting I had to attend) and he said that I should go somewhere like Mayo to get a full workup, since she is always so sick.  Well, that freaks me out, as he is pretty low key, and his wife is a doctor.  So, I tend to trust in him, and when he suggests something like this, I take note.  However, usually (75% of the time) it is linked to either a virus going around my kids' daycare, or my son had it, or my DH or myself.  Of course, we don't have such high temps, but it is usually linked to some outbreak that has occurred in the last 3-5 days that she was exposed to.  My Ped said that she thinks a high temp is sometimes considered a good thing- since it is her body trying very hard to fight off whatever infection it is going through.  I kinda buy that; does that sound off-the-wall?  Now, sometimes she gets something and I don't know where it came from, and that does scare me.  She averages about 3-5 weeks in between these illnesses (and, it is usually a high temp, vomiting and/or ear infection).  She doesn't sleep well at all (up numerous times a night) and of course, still doesn't eat well.  We just d/c'd her Prevacid upon GI orders (it really didn't seem to help with eating or sleep anyways, and we went up to 15 mg/day).  Oh, and she will be 15 months in about a week.

Where do I turn next?  Is this typical for a kid in group daycare/that doesn't eat much at all per day/has an older brother in group daycare/that doesn't sleep/etc etc etc.???  Or, do I need to go to Mayo?  Or look for a rheumetologist (sp?) 

I am really trying hard to not stress as much about her food and milk refusal, and I was getting better, but then I hear these comments, and I think maybe I should be doing more...?

Please, any thoughts are welcome. I am so tired from not sleeping for the past 14 months, that, yes, I need guidance from others and am having a difficult time figuring out what to do next.  I even looked up an ex-boyfriend who is a chiropractor and am asking him if there is anything he can do to help.  I am just that desperate! 

Thanks in advance for reading!

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Re: Not sure where to post this?

  • I would tell your pediatrician you'd like to see a specialist to get to the root of why she is always so sick, and ask her what type of specialist you should start with.  I recently did this for my younger son (he's 6, but we just adopted him last year), who had pneumonia at birth and has recurring sinusitis since.  The pediatrician keeps insisting it's allergies (even though his environment completely changed and he didn't test positive for any allergies), and wants to just keep medicating him.

    My gut is telling me that there is a bigger problem (maybe an auto-immune issue), and I'd like to see if we can't prevent the constant illness.  We're seeing a pulmonologist next month.


  • My gut is you need more help than your pedi is offering at this point.  2-3 chest xrays in a year, vomiting, high fevers, no appetite...all that is  more than a "cold" or simple virus.  Or if that is all she is exposed to, her body is not handling it well at all.  A pulmo would be something I would FOR SURE see.  Our pulmo changed our world--literally.

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  • Thanks so much for the responses!  Okay, here goes my 'duh' question.  What is a pulmonologist and what would they do for you?  I read the definition online, but I have a feeling some of you would have better details of what I would expect. 


    Thanks!

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  • DS2 sees a pulm for a pre-Dx of asthma.  They can also help you figure out of her issue is reflux or asthma.  It is strange, but they can present similarly.  We also got DS's immunity checked.  simple blood test.  We did just figure out that DS gets everything. DH works in school, the boys go to daycare and are in different rooms, DS1 also goes to 4K, plus i work outside the home a few days a week.  Add germs at the store and he picked up everything under the sun.  It has gotten better.  Last winter we were in the pedi once a week.  This winter we have only been in a few times.  
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  • To be honest, I'm not sure if a pulmonologist is the right specialist for you, which is why I recommend asking your pediatrician (if she's open to discussing this) or another doctor.  I actually thought we should be seeing an Ear, Nose, Throat specialist, but the pediatrician said that since there's wheezing involved we should see the pulmonologist first, because he could rule out lung issues.  If he thinks it's more related to the other, he'll send us on.

  • Ah- gotcha.  I may either have to push a little harder to the Ped or get a secondary opinion from another Ped (which, I have been contemplating).  I kinda feel like I am cheating on my Ped getting a second opinion, but I will do whatever is best for my DD.  I love the Ped, but if I can't get better answers of why she is getting so sick so often, I think it will be time to move on.

     Thanks all for the feedback.  This parenting stuff is hard.  :/ 

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  • image grbnik:

    Ah- gotcha.  I may either have to push a little harder to the Ped or get a secondary opinion from another Ped (which, I have been contemplating).  I kinda feel like I am cheating on my Ped getting a second opinion, but I will do whatever is best for my DD.  I love the Ped, but if I can't get better answers of why she is getting so sick so often, I think it will be time to move on.

     Thanks all for the feedback.  This parenting stuff is hard.  :/ 

    i understand this completely. After our last episode I was all charged up and ready to switch doctors. Then I remembered all the reasons that wouldn't be a simple move, given all my sons' special needs. And *then*, my older son asked if it meant that his doctor wouldn't be his doctor anymore (cue sad face), and I decided to stick with her a little longer. 


  • DD#1 had chronic coughing and croup a bunch of times during infancy/early toddlerhood. We sought out an ENT first, then finally were told to see a pulmonologist who diagnosed her with reactive airway disease (a form of asthma). You don't necessarily have to get the pedi to agree with you seeing either of these doctors if your insurance doesn't require you to get a referral. I am lucky enough that I don't need referrals to see any specialists. I can just make an appt for whatever specialist I want to see. Look into this and you don't have to ask the ped. Good luck
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