"Suffering the Slings and Arrows of Outrageous Fortune"

We saw Dr. Garza, motility specialist at Cincinnati Children’s yesterday. I was pretty nervous about it if you couldn’t tell.

Whenever I prepare to go to a new doctor visit, I feel like I am cramming for a test. (20 some years after graduating, I still have a recurring nightmare where I suddenly realize I haven’t studied for a test that is starting in two minutes. It is enough to make me bolt awake in a cold sweat. So, maybe it is not surprising that my brain thinks it is cramming when faced with a ‘test’ like a doctor visit.)

Anyway, I really feel like I have to study in advance – to know everything that could come up, to be aware of any medications, side effects, procedures, treatments that might be discussed. Of course, I am always at a huge disadvantage because I didn’t actually go to med school like the doctor and having little faith that the doctor is going to do his job without my input just heightens the pressure. It is beyond frustrating and intimidating and nerve wracking… thus my need to cram.

Imagine all feeling all of that, then instead of the impossible test you were expecting, the teacher/doctor pops in with a smile and just has a nice chat with you, casually reviewing the subject at hand. Instead of an exam, you actually get a lesson from a kind, knowledgeable teacher. That was what our appointment was with this doctor. Crazy, right?

He totally threw us off by coming in and chummily chatting with Em about her hobbies and life. He asked about EDS and about her ‘tricks’, making a point to say he wouldn’t ask her to show him her tricks because he knew it wasn’t good for her. Then he asked her about what was going on. He pushed her to talk about her symptoms and problems. When she was quiet, he told her she didn’t have to talk, but, if she didn’t, she couldn’t complain about it later.

His opinion is that she has the typical presentation of GI problems that go along with EDS. Basically, he wants her to keep on with what she is doing since it is mostly working. He feels that her problem is a functional bowel issue, that the nerves in the connective tissue of the gut are hypersensitive, causing pain, nausea, poor appetite and constipation. Going forward, some of this will be a matter of managing symptoms and doing testing to see what is going on. Some of it is a matter of pushing through the pain, “not eating is not the answer”.

He does want her to have an endoscopy, which is no surprise, and there we run into a problem, which is also no surprise. We are in an insurance pickle and we are not sure BCMH will be able to pick up the slack which is incredibly frustrating – I will write another post about that, but, suffice it to say, being able to have any testing done at Cincinnati Children’s is highly questionable atm.

So, when he found out that Riley is in network for us, he got excited and said he knew a great doc there who he trusts totally, who could help us by taking over Em’s case. In addition, he wants her to do some cognitive therapy and, since it ain’t gonna happen at Cincy, it is wiser to just head to Riley to do it all in the same place. I feel a little conflicted about this, because I really liked this guy and I would rather stick with him because he seems to know what is talking about. And he is pleasant and kind and funny. On the other hand, if we need to go to Riley to actually get what we need, well, so be it.

My brain is tired today (yesterday was a LONG day, in more ways than one) so I am waffling a little about this. My gut (no pun intended) is wanting to stay with Garza, but I just don’t know if it is practical. It probably isn’t and I am second guessing that decision all around and probably will for some time.

So, here are the symptoms we discussed and what he said about them:

  • Chronic Constipation – keep on with the Miralax since it is working. Pooping is good, not pooping is bad. (I would call him Mr. Obvious, but I liked him too much!)
  • Early Satiety/ Poor Appetite/Nausea – eat small, frequent meals. Avoid the foods that are real problems, but don’t avoid eating. He is encouraged that her weight loss has stopped and she has even gain a few pounds back – it is a good sign.
  • Pain – she needs to train herself to eat and not avoid eating. He also told her to try taking peppermint oil capsules – that they really help and have no side effects. He recommended a brand called Complete Relief, but we have not tried it yet, so I can’t speak to whether it helps or not. Peppermint is an anti spasmodic, so it makes sense that it could be helpful. Will post when she actually is able to try them.
  • Swallowing Difficulties – he thinks an endoscopy is a good idea, but that it will likely be normal. Where that leaves the idea of EoE, I have no idea – he certainly didn’t seem convinced this was the issue. We follow up with Abonia at the end of the month and I am hopeful that we can turn our focus back to mast cell, but who knows.

The end result is we have the possibility of another highly recommended doctor within our insurance network, which is good. It could take some time to get to him, so that is not good. No real help at the moment, other than the suggestion of peppermint oil, but things are also going ok so there is no real emergency to add additional medications or take any specific actions right now. Also, he did not suggest she come off any of her meds, although he did comment on the reality that she is on a lot – nor did he suggest going gluten free. So, no big advances but some small hopes of eventual progress and none of my fears were realized. We were really pleased with him and a little disappointed that we wouldn’t be seeing him again – although I am reminding myself that we can always head back to him, if this other doctor doesn’t work out.

It is a relief that this one is behind us – to be told we are not crazy, that these issues are real and need attending to, and at the same time, we are doing ok. It is a huge validation and so gratifying to have been treated nicely. If you have a chance to see Dr. Garza, I definitely would encourage you to do so – he was pretty great, at least on first glance!

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Comments on: "Another good visit" (5)

  1. Christy said:

    I’m so happy that you have encouraging news & you’re being led in the right direction! Could you tell me if Dr. Garza is strictly a pediatric doctor or does he take adult patients as well? I live in TN and haven’t been able to find any docs to lead me in the right direction on how to control the problems I’m having or get any answers as to what is happening with my body!
    I’m having issues with swallowing (at times it feels as if I’m chocking), I lose the feeling in my hands & legs frequently, my eyes are having issues with blurred vision, I’m having problems with ringing in my ears frequently, my joints just give out on me at the drop of a hat (especially my wrist & ankles), I have multiple GI issues, I’ve been diagnosed with adrenal failure, for over six months they’ve been tteating candida & thrush…the list goes on & on! Can you recommend any doctors that would be good to see for adults? I would be willing to drive to the Cincinnati area! I would greatly appreciate any advice because right now I really just feel like a fish out of water!

    • Honestly, I don’t know if Dr. Garza sees adults, but I know some of the docs at Children’s do. You could give the department a call and ask – if they say no, perhaps you could explain your situation and ask if he knows anyone closer to you that might be able to help. It would be worth asking – the worst they can say is no!

      Hope you find some help – it is rotten to have to live with all of this stuff. Good luck!

      (The number for the Cincinnati Children’s GI department is 513-636-4415 or you can look it up on the website cincinnatichildrens.org.)

      Good luck!

      • Christy said:

        Thank you so much for the information! I’m so sorry that your daughter & your family have to go through this! I know first hand how your daughter feels and I understand how frustrating is on you, as her mother, because I see the tears fall from my mother’s eyes! Hang in there and know that you’re not alone in the fight for answers! I pray everyday that they will get a research center and find a way to make life easier for EDSers. A cure would be a wonderful gift but I will take just being able to have a life without the pain, fatigue and feeling totally overpowered by EDS! (((Zebra Hugs)))
        Christy

  2. Beth, thanks for the post. Nick has been referred to the endocrinologist and at first the pediatrician wouldn’t tell us why. Of course I couldn’t schedule the appointment until I had a possible diagnosis. I keep waffling as to whether or not the pediatrician is right and I would love to say we are taking a wait and see approach but with everything else the child has going on I can’t do that. The appointment is next week and I am in full panic mode – making sure I have everything uploaded to the iPad, have EDS information, ideopathic inter-cranial pressure information – nothing gets left to chance. Friends don’t understand why I don’t just let the doctor do his job – I don’t know him and I don’t know if he can put all the pieces of the puzzle together so now I am cramming for the next exam as well. I am very happy to hear that you made progress with the motility specialist. Hoping that Em continues to get the help she needs and continues to make progress.

    Stephanie

    • I am with you – if I could be 100% convinced the docs would do their job, I would be more than happy to hand over the process to them. (Well, maybe…) But, I am not at all convinced any of them are all in and I just know that I am. ’nuff said, right? Good luck with Nick’s appointment – hope it goes well. I know you will ‘pass that test’ with flying colors!

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