Clinic Appointment Update

Yesterday, we had a clinic appointment.  We were basically discussing the endocrinologist report, and what that means for Mariella.  We went off with orders for a test for Pancreatic Insuffiency and for an abdominal ultrasound.  She also had some blood work drawn.  (that did not make for a happy Mariella) She also wants us to see a dietitian.  So concluded the Gastroenterologist portion of clinic appointment.

Then, the pulmonologist came in the room, and we discussed her admission in July.  She agrees with Dr. Duda, that we are looking at something more than asthma, and that all the meds are masking what it really is.  She likely has an asthma COMPONENT to it, only because of the strong family history of asthma, but if she were mainly, purely asthmatic, she likely wouldn’t flare as often as she does, nor would she need rescue as often as she does, given the amount of medication she takes.  Of course, there are exceptions to every “rule” and she might “just” be a severe asthmatic, with very poor control, despite the medications she takes…but in order to find out, we have to take her off her meds to make sure.  Finally, we all agreed to make sure that anything that Dr. Duda wanted looked at or tested would be done as well.

Lastly, the ENT came in.  Mariella doesn’t have any ENT issues at all, but Dr. H is the coordinator of the program, so he basically comes in for what he calls a “social visit.”  We talked about the fact that he had run the Boston Marathon the day before.  He will be the point person for anything that Dr. Duda wants done for the admission.

All in all, it wasn’t a bad appointment.  We weren’t looking for any great answers for anything, we were more looking for a plan, which we’ve got.  I have to make my phone calls, to get appointments with the dietitian and for the ultrasound, as well as the labs.  Now, we just wait for July.

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7 Responses to “Clinic Appointment Update”


  1. 1 sarahsasthmablog April 20, 2011 at 12:11 pm

    Poor Mariella! I know how bad needle issues can be. :\

    Also, here’s hoping the pancreatic test will give you guys something to work from. *hugs*

  2. 4 kerri April 21, 2011 at 8:53 pm

    Once again, hang in there, Sara!

    I’m interested to hear how the appointment with the dietitian goes — keep us posted on that.

    • 5 mommato2beauties April 21, 2011 at 8:57 pm

      our appointment is May 24, I think. The nutritionist comes to our pediatricians office twice a month…we COULD have done May 3rd, but I’m still working, and honestly, the situation isn’t going to change all that drastically in a couple weeks…No one has thought it emergent enough to address with a nutritionist for the last 2 years, so is a couple weeks going to change anything? I’ll definitely keep you posted. (I forgot to ask the appointment girl about getting the supplies I need for the PI test, and I have to call radiology for the ultrasound…I’ll do that tomorrow.)

  3. 6 mymusicallungs May 4, 2011 at 1:41 am

    I think I am as intrigued as you are. I know M has been diagnosed with a gastric issue but I wonder if she has had any sort of troublesome reflux, either now or in the past. Enough to initiate her coughing and even some sort of lung issue adding to her asthma component. Also I don’t know if they test children for VCD but everything is worth a shot, I guess.
    Good luck with it all and keep us posted! xx

    • 7 Sara C. May 4, 2011 at 4:49 pm

      she does have reflux….it is pretty much controlled with 30mgs of prevacid every day. Some days, she gets “volcanoes in her chest” so she gets an antacid kicker. We know she has some lung damage from aspirating that…We haven’t done a follow up CT scan to check what’s going on with that…so that might happen in July. She definitely has asthma…but who knows if there is VCD going on in conjunction. She definitely has a respiratory disease of some type, because of her issues with de-satting, even when NOT flaring…but who knows why that is.

      The team is committed to finding out what is going on, in order to allow her to get well (whether on inhaled steroids or not.) We just need to find the right combination of medicine and therapies to allow her to get there.


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