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meg1970

First Time Visit

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Hi,

I'm new here, but I've been cruising the forums just taking in what I can. My name is Megan, and I have a daughter that is almost 17 years old, who has been miserable a lot of those 17 years, with pains that just can't be explained. She has also suffered from allergies her entire life, and has never had a clear day. We recently took her in for another round of allergy testing, to see if anything had changed from when she'd been tested when she was 5. We found she is "allergic to life" as she likes to put it.. all grasses, trees, cats, dogs, feathers, some molds, weeds, and a few others I'm probably not remembering off the top of my head right now. However, we mentioned the stomach issues, and wondered about food allergies.. and mentioned the things that seemed to trigger her most. When tested, THOSE all came up negative. After talking with friends & co-workers, they've mentioned the idea that maybe she has a problem with glutens. I was told she would need to see a pediatric gastro- since she is not yet 18. I searched for a couple of weeks, and everytime I thought I'd succeeded in finding one, I'd not like the reviews I'd read on them. I wanted to know I that I'd found a doctor who at least knows about gluten issues and what to look for and how to explain it, etc. Anyway, I finally settled on the only one I could find. We see them next week.

So, the question being, has anyone had experience dealing with Children's National Medical Center out of D.C.? I'm not actually going to the main facility, but one of the sattelite offices in Maryland. It's a good 50 miles from home, but it was closer than going to D.C. for me. I'm not really sure what to expect for the first visit, but I know I have to drive over an hour to get there, and over an hour back, and I'd sure hate to sit there forever waiting, and then only see someone for 15 or 20 minutes. Are there specific things I should be saying or asking? I almost feel like I'm drowning, trying to read the info out there.. all the terms seem so foreign to me.

I look forward to any knowledge that can be passed my way, in a way I can understand it.

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I would ask if there is any lab work you could get done first. Might save you a trip.

You might have sent them her previous records and most recent blood work, but I would get a copy & take them with you. Keep them in your purse incase they don't have it.

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I would ask if there is any lab work you could get done first. Might save you a trip.

You might have sent them her previous records and most recent blood work, but I would get a copy & take them with you. Keep them in your purse incase they don't have it.

I didn't even know a doctor would submit to ordering labs prior to meeting with you. I seem to fight any doctor we see to get anything done. I just really hope that the fact we are going to something that is supposed to be pediatric specialized in all these fields, will take the time to be with us and not just brush thru the visit.

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See about tests that can be run. i.e. stool testing for parasites, Celiac panel,

Be prepared the doctor will suggest scoping. Ask all the questions you can think of from there. What are you doing the test for? Ruling in or out possible disorders.

Keep a food journal with food (intake time & amount/ please list all ingredients), symptoms (time), BM (time & consistancy). Some doctors may take this seriously, others won't. I can help you find a possible food intolerance reaction. Some reactions can cause reactions for 12 days.

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So yesterday was the initial visit.. we were there for quite awhile. He spent a good deal of time listening to us, asking a lot of questions, did a quick examination of her and discussed what he wanted to do next. He did order labs.. LOTS of labs.. 4 vials of blood, urine, and stool sample. He is also asking her to follow a low lactose diet for the next 2 months as well as once again trying the miralax & prescription prevacid stuff. We see him again the end of March, to see if the changes we make that way, in any way help her or not, as well as if anything shows in the labwork. I can call them for lab results- I don't have to wait the 2 months for that, but he would not be calling just to give me lab results. He said that if she doesn't see any improvement, or the labs do not indicate anything specific, at that point when we see him in March, he may want to order an endoscopy & colonoscopy. My mother in law just informed me this weekend as well, that 3 people in the family have recently been diagnosed with Chrons Disease, so I did mention that to him as well. I took in the bloodwork that she had done this past summer, which was just a general screening, and did not have a lot on it, plus, everthing was in the "normal range" that was on it. I told him we'd experimented with taking her off glutens for a brief period and he got a little upset, wanting to make sure how long it had been she was off of them, and how long since she resumed normal eating. I assured him it was only for a week, and it was about a month ago, so he was fine with that, but wanted to be sure the only thing we changed for now was to go low lactose- no milk, cheese, pizza, ice cream, etc.. however, he encouraged yogurt. Fortunately, we will be able to see him at another office, slightly closer to us than the one we went to yesterday, so the drive won't be near as bad. And better still, how thourough he seems to be, and interested in everything we can tell him, and wanting to know about her diet, bowel habits, and any other issues that may be of concern. (I mentioned that she is always freezing, cold to the touch, and complains of being cold almost all the time, since I wasn't sure if that was a symptom of anything.) At this point, it's just a waiting game.

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