Need Hugs !!!! Help!!!!!!!!

  1. OK... here goes....
    My son was born w/ a couple of cafe au lait spots....
    Now at age 3 1/2 he seems to be sprouting little ones in his arm pit and groin area... For those of you who are familiar w/ pediactric conditions he could have something called (sp?) neurofibramatosis. I have done some research on line and from I read I know that most cases of this disease are mild and not life threatening. I made an appointment w/ his Pediatrician (we have Kaiser) and I'm nervous that Ill get blown off...Please think good thoughts for me and Andrew... I have always been one of those patients that just listens to what the Dr says- grins and takes all my questions and concerns home with me. But after spending some time reading on this site... I know I have to me own advocate.... Any suggestions on what I should say and/or ask? I'm already feeling nervous and I can't seem to keep focused on my work...I want to make good decsions but I've always felt so intimidated by Dr.'s .... ahhhh!!!!!!!! send me your good thoghts... lend me your strength.... Thanks you guys!!!
    S
    Last edit by nrs2bme on Jul 22, '02
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  2. 9 Comments

  3. by   NRSKarenRN
    Sending possitive vibes your way. My Pediatrician is a developmental specialist and picked up minor problems with kids when young and gave us such great advice over the years.

    Take with you a list of questions from your readings and go down the list point by point. You might want to let the staff know you need extra time so your appointment can be scheduled at a less busy time of day. Remember YOU are paying THEM for their services. Without PATIENTS, they have no income.

    Good luck.
  4. by   live4today
    (((((((((((((((nurse2bme)))))))))))))))) ((((((((((((Andrew))))))))))))))

    My prayers and positive thoughts are with you both. :kiss
  5. by   KP RN
    Sending you an e mail hug!!!
    Can you have a friend or close relative go with you to the appointment?? I have found it helpful to have another pair of ears present, especially if the situation is anxiety producing!!
    They can offer you support AND listen to what the doctor says. Without someone else with you, you may possibly leave the doctor's office and wonder what he or she had to say!!!
    Been there, done that!!
    Good luck!!
  6. by   JeannieM
    Lots of good thoughts and sincere prayers for you and your little boy! Good advice already posted, especially writing down questions and taking a supportive friend with you. Let us know what happens; we care!!:kiss
  7. by   SmilingBluEyes
    HUGE hugs and prayers your way. Please keep up informed of any news or progress. I wish you both the best!
  8. by   NICUNURSE
    You and your little one are in my prayers. I agree that making a list of questions is a good step. And then don't hesitate to call the MD back if you have more questions.
  9. by   nrs2bme
    I was already considering the list of questions.
    But, what should I ask... I don't want to come across paranoid... but isn't every parent a little paranoid that something could happen to their kids? I made the mistake of reading some posts on a NF support BB and now I have all these fears I didn't have before....tumors? learning disabilities?
    I know I need to start with the basic questions but I haven't quite figured out what they are...
    S
  10. by   mattsmom81
    ((((((HUGS)))))) and prayers for you and your little one! I think most moms are a bit paranoid about their kids, and for sure nurse moms are...LOL!

    Let us know how it all turns out...you've gotten good advice here....my advice is try not to worry too much about this til you know what (or if) there's a problem...it's wasted energy that will drag you down. Take care!
  11. by   CATHYW
    Write down pertinent history (especially if any known family memebers have anything similar) ofr family and your little guy, and any medications he is, or has been taking. Make sure that the Dr. is aware of them.
    Also, write down any questions that you might have for the Dr., and ask them. Doctors are usually very busy people, but I've seen that they have more respect for people who are prepared to ask them questions that they can answer, rather than hem and haw around, wasting the Dr.'s time, while they try to remember what it was they wanted to ask. Remember, even if you do have Kaiser, you are paying for the doctor's time, and you have the right to be heard! Let us hear from you!

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