Saturday, November 01, 2008

That was a waste...

I took Emma to the doctor this morning after calling, saying she has broken blood vessels again same as about 3 weeks ago and I wanted to know if I should bring her in. Of course they say yes (they ALWAYS say yes, I don't know why I bother to ask any more but this is why I've decided that I won't even call usually). So I hurry around to get her there in 45 minutes (30 minutes away) and that is where I should probably stop retelling the tale.

Because I was not happy and I live in a small town and shouldn't speak ill of anyone.

But, for the sake of saying what is important, I will tell you that I was told very sternly that it is not petechia and then was drawn a description of petechia, then he went to get a medical book to show me what petechia REALLY looks like (which was surprisingly similar, in all accounts, to what E's underarms look like...). He then tested her for strep (??) because her tongue looks dark. Um... Obviously that came back negative (obvious to me) and we were told she probably has a virus that she's having a rash with.

A rash. From a virus. Only where she's had contact with pressure. With only a runny nose (a constant for her) to suggest a possible virus. Somehow I'm not so sure I agree there.

So we went home after a few more select words were exchanged and I was given a stern warning not to find out everything I can about Ds because I would never sleep at night if I knew it all and to just treat my kids like every other kid. Because I don't?

Yes, my kids are much like other kids, and we do strive for that 'inclusive' behavior, but this is the same model that we had with a former GI doctor that refused to chart Brianna on a Ds chart and insisted she was severely below norm and needed her tube feedings increased. On the Ds chart she followed a beautiful curve and we stopped seeing that doctor, stopped tube feeding, and quickly found another GI doctor that looked at her pretty curve and said "great!"

With that I say, yes, treat my kid as if you would any other child. BUT, when it comes to being proactive in health, know the risks, know the signs, and be cautious before you tell me she has a virus- twice in one month- causing a rash to develop that is under the skin and shows up only in areas where pressure is applied.

I do not overreact with my children, I don't assume that just because she's got this going on it must be something major. No, I'd like to guess it's just a fluke that is happening, but I'm not naiive enough to believe that I should write it off as nothing and not check on the more serious things that my child is at a higher risk for. I call the health professionals when something 'unusual' develops and seek their medical expertise to tell me whether it's something I need to pay attention to or not. In this case, I was told twice YES and now, NO. I really do hope he's right.

Our regular ped wanted to rerun bloodwork anyway so we will pick up a script from her on Monday with whatever panels she wants drawn to double check on things. We probably would have done that even without the repeat incident. Then we will hopefully agree it's a fluke after we have a pretty blood panel come back. But only after we cover the bases.


  1. You're doing the right thing, Meredith! Stay on this! You know the possibilities, and better to know the truth early (good or bad, fluke or not) than to let it go.

  2. Absolutely the right thing to do. I hope the bloodwork comes back fine.

  3. Hi I just wanted to say YES your doing the right thing. Petechia isn't something to mess with. BUT Try and stay calm. I have been through exactly this with Tristan and it has turned out to be nothing. Tristan gets Petechia and has for 3 years. He usually gets it at times when he has a cold or flu. Usually in areas where pressure has been applied EX: Carseat belt He has had extensive blood testing and it turns out to be nothing scary. His skin is really delicate and sensitive especially when he isn't feeling well. I have read about alot of other children that have DS that also have this problem. Hopefully that is all she has too. I know how afraid I was when this started happening my mind kept racing to the big bad L. Mostly because I knew T was at higher risk. Just thought I'd share and hopefully make you feel better. I will keep you in my prayers!

  4. In our thoughts and prayers for it to be 'nothing' as the wise doc seemed to want to force you to believe....glad you're checking it all out though- I would be too!

  5. My mouth was hanging open as I read what the doctor said. I assume that Emma is on blood thinners after her surgery? I would also assume they can cause the very thing happening to her. Did they do an INR? :o( We all seem to be seeing the same type pf doctor these days, we definitely need a new GI, obviously he will not help the girls.

  6. I'm sorry you had to deal with this.
    Docs can be a pain in the rump sometimes.

  7. hang in there meredith. you are doing an awesome job at advocating for you daughter....and can be a pain in the rump sometimes....especially when they have the head knowledge but dont stop to feel and listen to parents when they know something is not right.