"Suffering the Slings and Arrows of Outrageous Fortune"

On Friday we had our first visit with our new geneticist. We were up bright and early to head down to Cincinnati Children’s to see Dr. Neilson – one of the doctors who has replaced Dr. Tinkle in the EDS clinic.

For anyone planning to see him and wondering about him, I will say that he is pretty young, very pleasant and has an easy going attitude that made him quite easy to talk to. He is compassionate in a practical, down-to-earth way. He treated my kid like a person, which I appreciated. He did not feel obliged to check her hypermobility or hurt her in any way, which I LOVED. (Not that Dr. Tinkle ever did, but you have heard me talk about other less civilized doctors who have and it is a very pleasant experience when it doesn’t happen. Sad, but that is our baseline.)

So, yeah, we liked him. Most importantly, Em liked him. He is very nice and, while perhaps not the EDS expert Dr. T is, he appears to try very hard to trouble shoot – not an easy task with EDS. I really liked the fact that he sat and thought through each of our issues and genuinely attempted to give us an avenue to travel.

For what it is worth, I feel like we have replaced an expert with a problem solver and I am really ok with that. In our experience, Dr. T had enough EDS specific knowledge that he didn’t really have to think about his answer – he would just pull out advice from his bag of tricks and pass it out. But, after all we have been through, I don’t love one-size-fits-all medicine and I didn’t always feel like his advice worked for us. So, having a doctor who stops to consider his answer, brainstorming out loud while he does so, is a positive for me. I suppose it is a fairly subtle distinction between the two – Dr. T was certainly capable of thinking a problem through and Dr. N is definitely coming from a place of deep competency in EDS knowledge. I just LIKED the fact that he is a thinker.

He is sending us to the mast cell specialist and to the GI motility clinic – I asked and he agreed. Unfortunately, the general theme through the whole appointment was ‘there just might not be great answers for these problems’, which is true and frustrating. I don’t like that answer but I understand it. I know his hands (and many of the other doctor’s hands) are somewhat tied by the realities of EDS, but we can’t let that stop us from trying. So, in that sense, nothing has changed. I do my research and tell them what we need – and hope they go along; if they have some helpful first hand knowledge, so much the better. The good news is that he went along with my requests, even if he knows treatment is limited. (i.e. – MCAS has no silver bullet, gastroparesis has no easy answers and so on.)

In the beginning, he seemed very focused on exercise – he wants her to work up to 20 minutes of exercise 3 x’s a week. He held it out as the shining hope for EDSers and the best treatment he has to offer. Which it sort of is, but it is just not the answer for every ailment. I do hope that, because Em seemed to really like him, she will be more inclined to listen to him about the need for PT and exercise. He talked a lot about getting her heart rate up, which I found odd because her HR is ALWAYS up, it is just way ‘upper’ when she is upright. Her “POTS” symptoms are actually way more complicated than a simple case of POTS or orthostatic intolerance, but whatever – I think that is a carryover from Dr. T’s opinion about autonomic dysfunction in EDS, tbh. I disagreed with Dr. Tinkle and I will disagree with Dr. Neilson. I don’t think he bought my opinion that her symptoms have more to do with mast cell activation than actual POTS, but that is ok. I let the comments about getting her HR up go because I had bigger fish to fry and was already late to Co-op. Maybe next time we can really discuss it – and maybe that will be after real MCAS treatment and the symptoms will be managed when we see him again, which would nicely make my point. šŸ˜‰

He also brought up psychology – for pain management and counseling. At that point, I tattled a bit on Dr. G. Ā Dr. Neilson was diplomatic about it but seemed to understand why we would take issue with the things we shared about the pain management program down there. Anyway, he definitely thinks a pain psychologist is a good idea which I do not disagree with – he left it up to us to figure it out, but also offered help if we need it. And, he finally said (after a discussion about insurance) that if we can’t get there, just try Tai Chi because it is cheaper and teaches a bunch of the same skills. I am not totally on board with that, but I thought that suggestion was imminently practical and an honest suggestion on how to go around the system. (That would be in the category of him problem solving for us!)

We talked about her pectus carinatum (pigeon breast) and the related rib issues, which I am increasingly concerned about. I won’t say he blew us off about it, but, again, he talked about how there are no good answers for these things and then got side tracked with the ribs so I let it go, thinking I might be overreacting. However, when we got home and were talking about it, my hubby finally tuned in enough to look at what we were talking about. Discussing it with him, I came full circle back to thinking it is a problem that actually needs addressed. Andrew thinks she is starting some scoliosis in addition to the pectus deformation and her ribs are, well, wonky is the best way to describe them and they are getting wonkier – so Ā it is probably most accurate to say that she has a chest deformity that includes all of this. But, it is very likely related to the Vitamin D deficiency that I believe she has (we are still waiting for results from the blood work) so we will bide our time and wait until we know more.

Going in, the biggest thing I was concerned about was Dr. Neilson’s thoughts on the Driscoll Theory. We didn’t discuss it specifically (I am sorry, I should have sounded him out more but as I said, I really needed the appointment to not drag out indefinitely, which it already was. And, perhaps I was afraid to hear what he might say about the Driscoll Theory) but he definitely knew about the Diamox and Zyrtec and Zantac she was on and all he seemed to care about was that her headaches were managed. So, I would venture to guess that he is perhaps open to the idea. At the very least, he has now seen one patient who has done well on Diamox.

We asked if he would be willing to write up a letter for insurance, supporting our request to insurance for a better wheelchair. He had Jodi type one up on the spot but he also expressed the very typical concern about wheelchair use – that you can’t just give up and use it all of the time. I countered with our experience that has been so positive – that wheelchair use actually has opened up Em’s world, made her more active, gives her a chance to live more and has helped her get better. He said it sounded like she was using it in the appropriate way and he was fine with it. Most doctors just don’t get this, so I really didn’t care what he thought about it – that sounds rude, but I just didn’t care. Even if he hadn’t agreed to write the letter, we would have pushed to get the new chair anyway. But, it was very helpful for him to give us the letter and I am grateful that he will help us in that fight.

By the end of the visit, I think he had come to understand just how ill Em had been and how very far we have come. He ended the visit on a high note, with a pep talk acknowledging all we have accomplished but that there is more to be done – that there is hope for better quality of life yet. He spent a long time with us – probably a good hour and would have stayed longer if we had needed him to.

So, we liked him – he is not perfect, but I have yet to meet a doctor who is and I am more and more ok with that. Ā I suspect that, the longer he works with EDSers, the more first hand knowledge he will have and I can easily see him ending up as knowledgeable as Dr. T.

I am very hopeful as we start this new chapter, although the facts of our situation have not really changed. We still are battling a condition with no easy answers and the doctors have no magic bullets. Yet, I am hopeful because we are building a team of doctors who are willing to help, who respect us and appreciate that we have much to offer the team. The whole point is to improve Em’s quality of life and I believe with my whole heart that we will continue to do so with their help: Dr. Neilson will be a vital part of that team and that is a huge relief.


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