Wednesday, January 30, 2013

Catching up with Samantha pt. 1

I'm not sure when the last time I wrote about Samantha was.  I know it was before we moved into our new house, so she, too, has had 2 birthdays that I have yet to write about.  She's had a lot going on in the last 18 months or so.  A lot of it is about her gait issues, so this post will be all about that...then I'll actually work on catching up with the rest of her goings on in a second post. 

 In the summer of 2011, she started having a little trouble walking occassionally.  She could not walk fast at all and she was sort of limping while she walked slowly.  Running was impossible.  We were at the doctor's office for Jacob's 18 month visit the first time I noticed it.  The nurse asked her about it and we thought it was probably because of the ingrown toenail she had.  The doctor gave me some tips on how to keep her toenails from becoming ingrown since, at the time, she got them fairly frequently.  She got better for a while.  And then it came back.  And it was worse.  But this time she didn't have an ingrown toenail.  This kept going for a few months until it got to the point that it no longer stopped.  She couldn't run.  She couldn't walk fast.  She couldn't keep up with her friends at the park.  She did come up with a way to sort of run, by swinging her leg way out.  I was starting to get very concerned. 

I asked Samantha's doctor about it when we went for her well check in January, but she walked with exaggerated care for him so he didn't see what I was talking about.  He assummed that it was just something she picked up because of having ingrown toenails so much.  After that, I asked Leslie, who is a pediatric nurse, what she thought about it.  She wasn't sure what I was talking about.  But then when we were at the Lindley's house a few days later, she saw it.  She asked if that was what I was talking about and she was extremely concerned.  She was so concerned that the next morning she called me a couple of times and left messages when I didn't answer, called her kid's pediatrician in Temple to describe the gait to him and ask his advice, and walked over to my house to talk to me about it some more, all by 8:30 in the morning.  She asked to see Samantha trying to run again, so we all went outside to play.  She took this video for me, and sent a copy to her peditrician.  Her pediatrician advised going to the ER in Temple so that we could get into see a pediatric neurologist without having to wait potentially months to get an appointment.  I took the video to Samantha's doctor.  The next day our doctor called me back as soon as he had seen the video.  He said, "She wasn't doing that in the office, was she?"  And I told him that she wasn't because she was walking very slowly and carefully, putting one foot directly in front of the other, kind of like walking a line, but that as soon as we left, she was doing it again.  He was very concerned and the next day we had an appointment with a pediatric orthopedist for the following week. 

First we saw a nurse practioner.  She checked for joint problems.  She checked for a difference in the length of her legs.  She did x-rays.  She did everything she could think of that day and couldn't come up with what was causing the problem.  So she sent us for an MRI and ordered some bloodwork.  They did a full spinal MRI, from the neck down.  They didn't see any joint problems.  There was no spinal tumor.  There was no evidence of rheumatoid arthritis.  She sent us to her supervising doctor.  He reviewed the tests and ordered some additional bloodwork.  He still couldn't find any problems.

Jacob's ECI team told me about a client they had previously, who had an issue with his muscle and bone growing at different rates.  They thought that Samantha's gait looked similar and Grace thought that Samantha's right leg felt very tight.  They recommended that I look into that possibility.  They said that it did not show up in an MRI, that it was diagnosed by PT evaluation and that it was treated by PT.  They said that it was important to see a pediatric PT, though, because otherwise the therapist would probably not be familiar with issues like that.

So I asked the doctor to send us to PT instead of asking to be sent to a neurologist.  Our PCP said that he would be OK with that, but that he wanted to talk to the orthopedist first to make sure they were on the same page.  I called every month to ask about it and got the same answer each time. 

In the meantime, Samantha started ballet midway through February, and then, right around Easter, Samantha got much better.  She even noticed herself.  The week before Easter she told me, "Mommy look!  I can run normal!" as she ran down the hallway with no difficulty, no limp and no gait problems.  That improvement lasted a couple of weeks before the problems started creeping back in.

Finally, we were in the doctor's office in May or June for something else and I asked again.  He called again while I waited in the office.  Finally we got the OK to start PT.

Samantha had her PT evaluation in the middle of June and started PT twice a week the third week of June.  She had a lot of milestones that she was not meeting.  We worked on her balance, on standing on one leg at a time, on walking on a balance beam, on galloping and skipping and on walking up and down stairs with one foot on each step.  She made a lot of improvement, she accomplished almost all the milestones that she had been behind on.  But her gait was still bad.  A little better, but still not normal.  She moved to once a week PT in the middle of July and then had her last day of PT on Thursday, July 26. 

But that Monday (7/23) she had started walking a lot worse again.  And then she started eating a lot on Wednesday (7/25).  When I told her PT assistant about that during her last session, he said that it could possibly be tied to her growth after all, and that the abnormal gait could be a way for her to compensate for growing pains (which she has not complained of) or for her balance and agility being thrown off by her growth.  He did say that he thought that we should go back to the doctor, that if it was his child he would do so.  And I was glad to have a professional agree with me. 

I tried to talk about more testing, but it didn't happen.  And quite honestly, I was tired of fighting and Samantha was tired of going to the doctor.  So I decided that I would give it a break and just keep track of when her gait worsens and when she eats more and that I would track her growth every month.  So far, increased gait issues and increased eating have coincided each time.  But I think that I need to track her growth at smaller least biweekly, so that is what I have started doing now.  I figure that if it does show to be tied to growth spurts, then we have nothing else to worry about, with the exception of possibly doing PT again.  And if it doesn't, then I have something to show the doctor to say that we really need to be looking at what is causing this issue.  So that's where we are right now.  Just watching and reminding her about her PT exercises when she starts having a hard time again.  And she does do much better than before.  And she can keep up with her friends now. And that makes us both smile.