Eat Happy!

Eat Happy!

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Saturday, February 2, 2013

to RSS, or not to RSS?

Our family recently traveled to Manhattan to visit a well known Genetics Endocrinologist who specializes in Russell Silver Syndrome.. Since multiple doctors had brought up RSS on occasion, we thought we owed it to Ian to make the trip; especially since she is so close. It takes us just under five hours to get there.

We made the trip up on Thursday and stayed overnight. Early Friday morning, we met with the doctor. I have thought long and hard about how I wanted to present the experience we had...... I discovered there were little good answers. So, here goes..... for better or for worse......

She is a very busy lady and she sees LOTS of children. She has helped thousands of children, both RSS and SGA over the years. She is internationally known and published. She is considered one the of few specialists for RSS in the country. I would like to refrain from mentioning her name...... although about 85% of you reading this post will either know her, have met with her, or can easily fond out her name on the internet. 

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The appointment was very thorough with the Fellow before visiting with the specialist. We spent an hour or more in his office. When she was ready for Ian, we spent another 45 minutes speaking with her. Our impression leaving the office was “what?” It was certainly far from anything we have encountered with Ian’s care in the past- both in treatments, opinions, and the manner in which it was conveyed. Now, we have seen many doctors with Ian, each with their own “style.” This one was foreign to us.

The reason we traveled there was to receive or reject an RSS diagnosis. I don’t know why, but were not anticipating anything else... which may have led to the “what?’ stunned impression as we exited. She is a very well educated and respected physician in her field..... which is another reason why her opinions left us so confused. While it was never stated that he was NOT RSS, she mentioned to the Fellow “See how different this child is than the one we just saw?” I feel as though she spoke more TOWARD us, than TO us....... If that makes any sense at all.

She did spend most of the appointment talking to us about his SGA and IUGR issues. When I asked how that is treated compared to RSS, she said “exactly the same.” .... meaning that the growth and feeding issues are handled in the same manner. We tried very hard to complete this visit before Ian began his feeding program here at Children’s Hospital of Richmond (CHoR).... and we did. The reason is the this lady really likes to be involved in all aspects of the child’s care. Tom and I like networking doctors and tam players because, quite frankly, we have learned that not one person knows everything Ian needs.

At the appointment, she expressed that she would be happy to treat Ian. Then she stated “but if I see him, no one else touches him.” This did not sit well with us. Tom and I have worked *very* hard to build the team and the treatments we have for our son. Transferring ALL of his care seemed highly extreme! We weren’t sure we wanted to sever our ties with our awesome team at CHOP. This was a very large leap of faith we were sure we wanted to take, or honestly, needed to take. We an excellent GI surgeon, Dietitian, Feeding team-Program, Endocrinologist, and a Pulmonologist who knows more about GERD than the GI specialists ever did..... we were pretty darn proud of TEAM IAN.

Unfortunately, the appointment kept catching us off guard as it went along. She disagreed with our feeding routine and style for Ian, disagreed with his Endocrinologist about growth issues, and spoke that he had no business being enrolled in a feeding program until two to three years from now. Tom and I had no words at this point. We were completely caught by surprise....... I never said she was wrong.

She did say that there are probably several ways to solve Ian’s issues over the years, but she felt strongly that Ian needed a “director” for his care..... someone in the driver’s seat. Tom and I agreed with this... unfortunately, we don’t have one..... and we didn’t feel like this was going to be it either. It sounds INCREDIBLY conceded, but Tom and I are the ones that have done all the research on the combination of Ian’s symptoms and cross-specialties. We have had to educated so many doctors on Ian’s idiosyncrasies and meticulous details. We worked *very* hard to find a team that is “cross-specialtied” enough to know what and why the other doctors are doing.......... and we are very proud of our team. We were looking at add someone, not replace the ones we had with an “all-inclusive.” I do believe you can have too many hands-in-the-cookie-jar, but we feel strongly that one head cannot do the work of the handfuls we have for references as needed.

After visiting with the Diagnostician at CHOP, whom we will visit every six months, we felt as though we did have a “driver” in the seat, just not watching every move the car made. not only we were unsure we wanted to transfer all of Ian’s care to her, we weren’t sure we wanted to do it when she disagreed with several things we were doing, or not doing. Now, Ian still has his issues that we are trying to managed, but he has made large improvements over the last 18 months or more. Some of the propositions she recommended including moving backwards.

Now, I know that to move ahead, sometimes you need to go back to step one and start again; however, she intended to keep Ian at what she implies as our “step one” for over a year to give rest and relief. Personally, Tom and I weren’t sure we wanted to regress Ian for that period of time....... especially since it included 24 hour continuous feedings and significant food changes. The intention for these changes was to eliminate retching for a long enough period of time that he eradicated it from his thought process entirely. She mentioned that if he was doing *any* retching at all, he wouldn’t ever want to eat. We disagreed.

It might have been because we were expecting one thing with RSS and got another with SGA, or maybe because we weren’t aware we were going to hear about leaving TEAM IAN behind and hiring a “DRIVING MR. IAN.” Either way, we decided as a couple, that path was not Ian........ at least not at this point in his life.

She has helped so many children that have not been able to get help or answers from anyone.... but every child is different. Tom and I think she knows way more information than any ONE doctor Ian has..... and I believe her patients when they say she knows her stuff. For some reason, we didn’t feel it for Ian. I cannot explain it, but the uncertainty was too great for us to throw away 18 months of work for one lady in one day.

Ian is now a patient of record at the office, and she never forgets a patient. If we feel we need her, she is there. In the meantime, we did keep Ian on the same feeding routine and did send him to the feeding program at CHoR. It is an eight week program. It has only been one week, but Ian is definitely showing signs of improvement and doing things he hasn’t done in since he was nine months old. A huge success in our book!

I would like to end with a recommendation of care. If anyone has an RSS and-or SGA-IUGR child that is struggling with unmanaged issues...... this woman is more than worth the trip!! I would never discourage anyone from seeking her opinion, or her care. We have a high respect for her knowledge and her work...... but the shoe just didn’t seem to fit that day. Her approach rubbed us the wrong way and we decided to keep TEAM IAN just the way it is! 

Ian is medically stable, happy, and doing well in the feeding program...... a big step forward, rather than backward, in our book. 

*****  GO TEAM IAN!  *****




**If anyone would like some information about this lady concerning the needs and issues of these children, please let me know. I would be more than happy to share the wealth. ;)