Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 ARRRRRRRRRRRRRGH. I am SO frustrated. Firstly, had her 6 yr physical today, 4 months late due to back-to-back illnesses. Her ped is very intelligent, highly regarded in the Chicagoland area, always makes it in " Chicago " magazine's " Top Doctors " list. BUT one of his flaws is that he takes whatever limited info HE has, assumes that's all there is and goes with it. This is killing me legally, between our mold lawsuit and 's 504 Plan. Oh, and THANK YOU to all of you, so many replies re: 504 and lots of GREAT suggestions. NO way I'm dropping it. BUT apparently the nurse or somebody involved in the process must have called the ped recently. Keep in mind there are four to five peds in this practice at any one time. They divide their hours between two suburban offices. So if gets sick on a Monday, let's say, I'll take her to whomever is at the closest office since all the docs are fabulous and know her history. Seeing as this ped, 's primary care doc, is only at the office closest to us two days per week, you can imagine that does not see him personally very often. Also, I take her to see whichever doc I feel has the best grasp on whatever it is... there is one doc that seems to have a great head for sinus stuff, so if she has a sinus infection I make sure to see that other doc. Well, this ped, the primary guy, assumed that since he has seen very rarely over the past couple of years, that she wasn't getting sick! Egomania, or what? I'm not going to drive an extra 40 minutes to see him at the far office when I can see another wonderful doc close by, right? So apparently he told the nurse or whomever it was that called him, that is better now. THANKS! THAT will help us at the 504 Plan meeting!!!!! So now I guess I will have to go back and document all her illnesses as " proof " that she's still getting sick. Sigh. And he makes these blanket statements!! So we're at the physical and he says there's this new vaccine, it's a conjugated version of the meningococcal vaccine. He reaaaaaly wants to give it to her, calls the immuno to make sure it's okay since it's not approved in the US for kids under 11yrs old. Fine. He says he's considering running pre- and post- titers, so we discuss that a bit. I told him it was funny because I was about to ask him if we could take this year off in running the immune panel, because is the SAME, CLINICALLY as last year, so why put her through it. I mentioned her clinical status twice. So then when we were talking about the 504 stuff he said, " She's better, right! " I'm like, NO, she's still getting sick but no deep-seated infections, went on to list 3-4 ear infections, 3 gastro viruses, 2 LRIs, 5 URIs, 1 nasty flu-like virus that tested neg for influenza, several vague viruses with low grade fever, weakness, fatigue. Said it was pretty much what I expected for the school year, not great but no surprises. He went on to tell me that he told the 504 person she was doing well, then asked, " she's doing better, right? " I'm like NO (wondering, did I stutter??), but nothing deadly. So then I asked him for the scrip with the dx for the 504 meeting, all he had to do was write the dx, " Immune disorder: Antibody Deficiency " and he goes on to write this long-winded thing saying (in writing!!) " better clinically " or something like that, then I interjected AGAIN that she was NOT better, clinically, she was the same and still getting ill, so he added something about no serious infections but still getting minor illnesses. ?????? My take on it is that he must have told the 504 person that she's better, now he has to backtrack and revise and try to explain why he said that. So he's worrying about how HE'll look and I'm worrying about being accurate with 's health status so we can keep the 504. SIGH> So then I have to bring up the lawsuit we are involved in, to let him know he might be called to give a deposition. We are suing the HVAC installer who crushed the condensation drain in the condo above ours, causing a huge leak and enormous mold contamination which required us to abandon our home for 9 months. All I need from the doc is basic confirmation (which seems like common sense to me), that an immunocompromised person is going to be exposed to more people and therefore more germs and illness when they are living in a hotel for two months than if they had been at home in their private, controlled environment. Instead of listening to me, he was finishing my sentences and finishing them WRONG, Lord only knows what he would say during a deposition. Because back then, as now, we only saw HIM when it was convenient, we saw whatever doc was avail. So I told him he could review her chart and see that summers are always healthy for , except THAT summer, where she was sick 79 days from June through mid-October when we lived in hotels. She caught everything under the sun when we lived in hotels, we should never have been there. Sigh. I am getting sort of down over all this. That mold experience was horrible, and we really deserve something for all we went through. I am still suffering... they brought back some boxes of things that still smelled like mold but I couldn't bear to throw out, so I left them in the garage. Within a week of going through that stuff (and hugely pregnant at the time), I got an ear infection. Literally, 100% of the time when I do something in the garage involving any of that stuff, or stick my nose in one of the boxes to smell and see if it's safe to use or whatever, I get an ear infection. Money is more than tight, so last Fall I started buying in bulk and stocking up on canned goods and other non-perishables when on sale, storing them in (you guessed it) the garage. I have now had SIX ear infections since September. The ENT said, " STOP STICKING YOUR NOSE IN BOXES " , which is funny but easier said than done. We really need to have the garage remediated, but simply can't afford it. My desperate hope is that we get enough money from this lawsuit to remediate the garage and also enough that we can close this chapter in our lives feeling like we got compensated for the hell we went through. As it stands, I feel like a chump. A sick chump. Along with the ear infections, I've had this productive cough since January, I told Sandi about my interesting " cat meow " wheezes, saw my doc yesterday and she put me on an Advair inhaler, along with daily Allegra and of course Augmentin for the current ear infection. I keep getting vaginal yeast infections from all the abx, and MAN, if you don't think THAT'S worth a million bucks a pop, you ain't a woman!! There is no doubt in my mind that this is all related to the mold. So from here, I take my allergy meds, wear a respirator in the garage, find somewhere else to store any new stock-up items. I guess I'll clean the ones I bring in that are currently in the garage. SIGH. It never ends. I just don't feel like arguing with the ped and the 504 people at the same time. (mom to , age 6, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 2-1/2, more dairy intolerant but very healthy!) Quote Link to comment Share on other sites More sharing options...
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