Tuesday, September 18, 2012


They tell me my kid is complicated.  "They" being the more than one doctor we've encountered over the last few weeks.

Today we had our appointment with the new nephrologist.

Let me back up a bit.

Jack was discharged on Wednesday.  He had a relatively good Thursday, Friday and Saturday.  He had such a good Saturday that we thought it would be fun to all go out to dinner.  Jack lasted long enough for us to get to a restaurant and get seated at a table and then it became very clear, he was on the downhill decline of needing bagging.  So, we left before we ordered.

Sunday he stayed in bed all day and had good day.  Monday, he had two appointments. One with the orthotist to pick up his new DAFOs and hand splint and then to PCH for a blood draw.  He was stressed a good part of the time and needed bagging at least once that I know of.  I didn't go to the Monday appointments - Mark took him, but I was kept in the loop with texts from both Mark and Jack's nurse.

Today, we had appointments with the pediatrician and the nephrologist and Jack was stressed the entire day and required lots of bagging and even then, he was still in pain.


It seems now that Jack is fine when he's in bed, but when he's in his wheelchair and out of the house, he has issues.  It's hard for me to believe that it's just being in his wheelchair that is the issue when two and a half weeks ago, he was in extreme pain when he was in his bed.  We are still at a complete loss as to what is the source of the pain/desatting.  Every doctor we talk with has an opinion based on the information I provide at that moment in time.  We (me, Mark and Jack's nurses), who see him every minute of every day, can't find a trend or common denominator to pin the pain/desatting episodes to when we look at his entire course.

Yesterday, I received an email from Jack's St. Louis neurologist asking when she could call me about a possible new path for discovering what Jack might have.  I emailed her right back and told her what has been going on with Jack and that I was available anytime to talk.  She called within minutes of me sending the email and we talked for almost an hour about Jack, her experiences with other kids with neuromuscular diseases and her ideas of what might help Jack. It was so good to talk to someone who not only knows Jack, but knows kids with neuromuscular diseases.  Her timing couldn't have been better.

One of the things Jack's neurologist mentioned was that there could be an anxiety component to Jack's episodes and that we should give him something to deal with anxiety to take that out of the equation.  When we saw Jack's pediatrician today, I asked about getting a script for Ativan and while he agreed it made sense to try it, he wouldn't write the script.  He suggested we contact the Pain Clinic at PCH.  Thanks.

After seeing the pediatrician, we headed down to PCH to meet with the nephrologist. She spent well over an hour with us.  The first thing she says: "Jack, you are a complicated kid."  The nephrologist we saw when Jack was in the hospital focused on his low potassium and low citrate. Today's nephrologist focused on his low creatinine, which she said was due to his a muscular dystrophy.  She also changed things up a bit and is not requiring the every two week blood draw/UA (she said that's not nice to Jack).  It's a little concerning to me that one doctor felt the need to monitor Jack's potassium very closely and the other one does not.  Today's nephrologist also added another prescription to the mix and, likewise, suggested we see the Pain Clinic.

Guess I'll be calling the Pain Clinic tomorrow.

More than one person (including some of Jack's doctors) has asked whether it's really necessary to bring Jack to St. Louis.  My answer remains "yes".  The fact is, my kid is complicated.  We left the hospital a week ago believing we had solved Jack's issues.  We haven't.  I've received varying and inconsistent opinions about what his problem(s) could be and how to manage them.  I want another set of eyes to look at Jack, evaluate his information (which I'm gathering from his PCH records) and give me his or her opinion.  I need to know that I've done everything I can to find out if Jack's pain has a source that can be identified before I take the position that this is Jack's new normal and take it from there.  More than that, part of me wonders if this will be our last trip to St. Louis with Jack, in which case, I feel even more compelled to go.

So, to St. Louis we will go.

I could write an entire blog post on how I'm doing - but, it's late and, really, it's not about me.  But, I will tell you that this is difficult.  Really difficult.



Susan said...

I would imagine it is very very difficult. I hope the doctors in St. Louis can help. XOXO.

ssouth said...

I love your St. Louis Neurologist. My heart breaks for your family as you continue down this long road of confusion, frustration, and despair.

Claudia said...

I hope you find some answers in St Louis. x0x0

Christy said...

My heart goes out to you. I'm betting difficult is an understatement. I really, really hope this is not his new normal. Oh, and can I just say that I really don't get his pediatrician? To agree, but not write the script? WTH?
My fingers are crossed that you get some answers for once and for all. For crying out loud!
Okay, know you're loved and admired by so many. And we all just want to hug you and make you feel better.


Eric said...

Pain, however distressing is of course just a symptomatic expression of a deeper problem.I've been trying to discover the nature of Segev's paroxysms of pain since they started in 2004, with no real luck. I tried to get a license for medical cannabis and the health ministry, in its infinite wisdom, decided Segev wouldn't benefit from it....
There simply are so many variables with Jack that that i believe your best bet is to keep looking as you are; what i do with Segev (and my patients) is to every so often forget everything i know and start from scratch, not to discount any possibility, and very often I'm able to consider or find something new, which was previously blocked due to being locked into a certain way of thinking.

My best wishes for strength and patience.