Still No Results Or Appt -Daughter So Sick

[JuneFlower]

So my daughter has been vomiting and not taking fluids for 2 days. One more day of this and I will have to take her to the ER. The endocrinologist did blood work but the secretary won't give results over the phone. Supposedly we have to wait for 2 weeks. Not happening. Mama bear came out, and I was like, she needs to call me with what she has so we can get this possibility of Addisons off the table. She was so rude even after I explained that my daughter is so sick. I asked would she tell me over the phone if there was an issue, and she said no, wait 2 weeks. I almost want to drive there and make a scene.

Stupid other specialists are not sending their records to Dr Stewart when I ask, so he won't give me an appointment. I want to scream.

Is she sick with a bug or is this POTS, I don't know. Frustrated beyond belief. Feel like I should quit my job and be a stay at home mom.

June

[Christy_D]

Sorry your daughter is doing so poorly. It is so hard to know when the sickness is POTS or some other bug. My son also vomited frequently in the beginning, also diagnosed with cyclic vomiting syndrome. Thankfully, that symptom stopped. I would ask my son if he felt any differently when things amped up. He could tell the difference as to whether it was his usual POTS or something else going on. When he was at the Mayo Clinic, they taught him a breathing technique to prevent vomiting. They said there is no way to vomit while breathing this way. The problem is you can't breath that way forever.

As for the records, I have a complete set of his records from every doctor so I can send them to what ever doctor wanted them. It took a while to get them all gathered, but now it is easy to keep up with. After every appointment or test, I request notes or results be mailed to me. I scan them into my computer and keep a 3 inch/3 ring binder organized by doctor. I also have his MRI's on CD. I no longer have to wait for the middleman to send their reports. It also allowed me to see what mistakes they made regarding information they gathered, etc...

Stay strong,

Christy

[jpjd59]

June:

So sorry you are going through this. I am also the parent of a severely ill daughter and the doctors have seen the "mama bear" come out many times. I know it sometimes feels like you are continually fighting the medical system, but keep up the fight. Your daughter is lucky to have you on her side fighting for her!

Pam

[sue1234]

Maybe you could get through this time today by going to an Urgent Clinic. They can at least give her fluids and meds that lessen the nausea/vomiting. That will help you see if it might be a virus(and go away) or something that comes back when the meds are done.

[Lethargic Smiles]

How frustrating! That's strange she wouldn't give you the results over the phone, but I suppose some offices might have a policy against doing so or maybe the doctor hadn't released the results? Another possibility is there is something of interest in the results and the doctor would prefer to go over them with you in person.

I don't know what I wouldn't have done with my Mom letting her Mama Bear out. Your daughter is fortunate to have a good advocate on her side. Watching my Mom taught me how to advocate for myself, so now I can do it on my own.

My personal experience: I used to go through days of vomiting and become really dehydrated which lowered my blood volume, which made the POTS worse. I'd resist the idea of the ER, thinking I needed to be next to death to go there. I thought if I went and said I was throwing up and needed fluids they'd think I wasting their time. Now I know better and get on top of it early. For me, I found IV fluids worked wonders. At the ER, I didn't even explain POTS in detail, I just said I'd been throwing up a lot and becoming too dehydrated so I was getting pre-syncope which I am predisposed to. If they wanted to know more, I always had a peer-reviewed, recent POTS journal article with me to offer. They happily gave me IV fluids. Now, I have a standing order for them so I don't have to go through the ER, or if I do, I don't have to see a doctor, a nurse can just administer the order.

[Katybug]

Hi June,

Sorry you're going hrough this. Most docs offices have a form you have to fill out to request records to be sent . Have you filled those out or did you verbally request the records be sent to Stewart? If they don't have a form, I have a form letter I typed up and saved on my computer that I use to request records in writing. I just change the pertinent info each time I use it. If I have a problem with an office saying they don't have my request (even if it's one of their forms I keep a copy of it) , I send another copy by certified mail so I have proof of my request being received.

Keep your head up. You will eventually get it worked out. Will be thinking of you and your daughter.

[JuneFlower]

Yes I filled out all the necessary forms. They are just @%$#'s. So they finally sent them. And dr called back with results and she does Not have Addisons which is a relief but also means she probably has Dyautonomia and it is responsible for all her problems. I'm not happy about this as it hard to treat. Dr stewart will still take 3 weeks to schedule our appointment. Getting really sick of these specialists. Keeping an appt on the books for a guy in PA just in case Stewart turns out to be a dud.

Christy-great idea about the binder. I had thought today that I will request copies for myself also like you.

Jackie and Sue- yeah I guess she could go somewhere for IV. They don't really do that easily around here. But she seems better now after 48hr.

Pam- It's good to know there are other Mama bears out there!

Katybug-yeah I'm going to have to certify everything from now on. I'm so disappointed with all her drs offices. I'm a nurse and I would never drop the ball like this for a patient.

June