Update on 3 year old daughter

**pberggren1** · 05-09-2012, 09:04 AM

Shame on those docs that told you to wait til the next day. A fever with a healthy person is serious and of course a billion times more serious with your daughter. You need to have a serious talk with those docs or find new ones.

**Sangye** · 05-09-2012, 01:45 PM

Holy cow. I'm just seeing this. A fever of 104.5 is a definite ER visit, especially if it doesn't go down with any cooling methods. Her doctor's office made a serious mistake by telling you to wait. I hope she's okay.

**drz** · 05-10-2012, 01:15 AM

Originally Posted by Sangye

Holy cow. I'm just seeing this. A fever of 104.5 is a definite ER visit, especially if it doesn't go down with any cooling methods. Her doctor's office made a serious mistake by telling you to wait. I hope she's okay.

Like everyone else here, I can't believe a pediatrician would just blow this off and not take it more seriously. Any parent sure would.

**ashb17** · 05-10-2012, 05:50 AM

i was kinda werided out that they advised me not to bring her in. I have sent a couple things out to different doctors asking for there opinion. This just makes me want a second opinion more. It was not her pediatrician that advised me not to bring her in, it was the docs that treat her specifically for her Wegs!!! I`m so angry now. But she is much better today. Her pediatrician did the normal check up, didn`t see or hear anything out of the ordinary but wanted to do a chest x-ray just in case. Her chest x-ray showed some `streaks`on her right lung. I asked what it is and she said she was not completely sure but wanted to treat it with antibiotics anyways. I asked if the antibiotics were okay with the meds she`s on now ( she said yes, the pharamacy said yes and her wegs docs said yes). Okay so after that we came home and I immediately called her Wegs doctors (i have a feeling they don`t communicate to well with her regular pediatrician) i asked them if they wanted to check her out since there`s something on her lungs in her x-rays, they said no and that if she started having difficulty breathing to bring her in. They also said her fever might take 24-48 hrs to go away. I also asked if they thought it could be a flare and they said no! I`m really upset that they don`t want to even take a look at her and that they didn`t want me to bring her in. What are you guys thoughts on this? i could really use some advice.

**pberggren1** · 05-10-2012, 09:21 AM

I would be upset as well. I think they should have taken a look at her as well.

Is there any way you can travel to Toronto?

Al · 05-10-2012, 11:22 AM

Ashley, it is true that a fever is unlikely to be a direct cause of a flare. WG inflammation is localized in small blood vessels (it can, of course, be "local" in more than one area at a time), rather than a global rise in temperature. However, if the fever is caused by an infection, the infection itself could trigger a flare. As for your doctor, the only thing I can think of is that perhaps he didn't understand how high the fever was. But then, that is no excuse either, as he would have been obligated to get that straight. Otherwise...maybe he or she had a fight with a domestic or business partner. No excuse: You leave those things outside the patient-doctor relationship. Or, maybe a knee was involved with an out-of-control lawnmower. No excuse: Doctors must have a responsible colleague on call to cover for then in such cases. So, I cannot think of any acceptable excuse. I'm sorry to be so blunt, but your doctor let you down.

Al

**drz** · 05-10-2012, 11:43 AM

" It was not her pediatrician that advised me not to bring her in, it was the docs that treat her specifically for her Wegs!!!"

I m glad it wasn't the pediatrician who blew it off. I think I would try make her the primary doctor and and ask her to consult with the Weg specialists. I would also push her to find out if she thinks the Wegs doctors got a good handle on how to treat your daughter. If she seems less than enthusiastic about the Weg doctors, ask for suggestions on who might offer better Weg consultation for the little girl. A pediatric Weg specialist is probably extremely rare since very few very young children are unlucky enough to get this diagnosis. The Weg specialist should be willing to consult with the primary doctor or they are not much use in a dangerous or risky situation unless they assume the direct care responsiblity in a timely manner.

**mr.g** · 05-29-2012, 01:46 PM

Ashley...how is she doing? How are you doing? Just checking. Give her a hug from all of us.

Ev

**ashb17** · 07-23-2012, 08:00 AM

Hey everyone! sorry I haven`t been in touch lately. I just graduated from college and have been pretty busy. Tiana is doing awesome! She will be off her pred at the end of the month but will continue to take aza for the next couple of years at least. Her doctors are amazed at the progress she has made and how well she is doing. The make a wish foundation has granted Tiana a wish and will be coming on the 30th to discuss what she would like to do. We`re pretty excited! How are you guys all doing?