We currently see Dr. Gupta, and we have been relatively pleased with him, but sometimes when you feel like a person is not taking the time to really LISTEN or feel like the problem isn't being fully addressed, you have to do whats necessary until you're satisfied.
During our visit, we saw both Dr. Roge (a physiologist) and Dr. De Roode (an orthopaedic surgeon), whom both evaluated Jocelyn simultaneously. I liked this approach because they both come from different backgrounds and therefore, they both took a different approach. I felt like the initial assessment was thorough and complete. We were there for about an hour and the ladies actually made the appointment enjoyable -- if that's possible?
They asked me what my goals were for the visit and then almost seemed surprised that I actually had some. I think its weird that they thought it was weird. Or maybe they were just caught off guard?
Anyways, my goals for the visit were the following:
- A second opinion regarding Jocelyn's hips,
- To find and treat the source of Jocelyn's pain rather than continually treating the symptoms, and
- Develop &/or change her current plan of care to enhance her quality of life.
They spent quite a while going over every limb, evaluating degree of flexibility versus spasticity along with measuring, assessing how she moves, reviewing past xrays, looking at the creases of her skin when in different positions and so forth.
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| {These are an example of what/how the doctors assessed Jocelyn. These images are actually how Jocelyn clinically presents as well} |
We didn't take any new hip xrays as their assessment didn't lead to believe that she needed additional ones at this time. They concurred that from the February xrays, the head of her left femoral is approximately 50% subluxed laterally (which means partially dislocated off to the side) when her legs are straight and together. This means that when Jocie sits straight-legged, standing with feet together or on all-fours, her left hip is 50% out of the socket.
When Jocelyn is in a frog-legged position, the position of the left femoral head improves and is covered by the roof of the pelvis. This is the most "hip-protective" position for her to be in, so I'm please that this just so happens to be the easiest position to put her in. The condition of the right hip is similar, but not to the degree of the left.
One of the things that the team pointed out, that I wasn't expecting, was her limb length discrepancies. I mentioned to them how we try to accommodate the short leg as to not throw the hips, spine, shoulders ... all of the above ... out of whack. Made me want to start singing that song "... the leg bone's connected to the hip bone ..." but I didn't want them to think I was crazy.
What they told me was that even though Jocelyn had grade IV bleeds on both sides of her brain, her left side is more affected (I of course already knew this), but what I didn't know, was that since the right side of Jocelyn's brain was a little bit worse, that was the reason the left side of her body was so much shorter. The two are correlated.
I didn't realize prior to this appoinment that the ENTIRE left side of Jocelyn's body is noticeably shorter. They showed me the measurements. I just thought it was her leg because of her hip. As her left leg travels up towards her abdomen, it pushes the right leg down and out of the socket. So what you get is a "shorter" left leg and "longer" right leg. But this wasn't the only reason for the length discrepancy. The actual bones in her arm, hand, femur, tibia ... even her foot ... are all smaller. Come to find out, with the left side of her body being more affected, not only will her left limbs be smaller & shorter, but so will the girth of both the bones and muscles.
Well that's just shitty.
I asked them what happens if it becomes even more of problem (couldn't help myself but had to ask) and I assumed they would use a halo to elongate those bones/muscles on the left, shorter side.
WRONG!
The orthopaedic doctor told me they shorten the bones on the longer side of the body.
Uhm, say what the what!!!
Sounds so barbaric doesn't it??
She said that sometimes they have to cut and remove portions of the bone, or they can temporarily stop growth on the right side by manipulating the growth plates.
I'd rather go with option two than sawing Jocelyn's bones off. :( But I have to be honest, I did not know you could temporarily stop the growth of the bones at the growth plate. I of course don't know what that all involves and how its done and so on (hopefully I won't need to know), but its kind of cool that the treatment exists. The doctors told me if there began to be too much of a difference in bone length (as in, the left side is simply not growing), then they would permanently destroy the growth plates.
I wanted to say "whoa, whoa, whoa ... lets not but the cart before the horse." but I listened and absorbed as much as I could with an open mind.
Even though they thought Jocie was a bit bizarre (apparently she is not put together, or physically demonstrating/presenting, like a typical kid with her diagnosis does), and even though they commented several times that things seemed backwards or wired differently, they thought Jocelyn was "extraordinary" which come on, what parent doesn't love to hear that?
Structurally, the doctors could not find where Jocelyn's pain could be coming from. In fact, they were pleased that even though the bones aren't shaped exactly how they should be (this is because weigh-bearing doesn't come naturally for Jocelyn), that they do have nice rounded edges, fit well with one another and there is not bone-on-bone.
Regarding their remarks about the structure of everything? That's a relief.
What's not a relief, is not know why Jocelyn has so much pain. My next plan is to see a chiropractor &/or a massage therapist that works with kids like Jocelyn as perhaps this is a nerve thing and they can help. I can't just quit trying or ignore it.
But for now, we DO NOT NEED HIP SURGERY!!!
Hallelujah!!!!!!
These doctors, as well as Dr. Gupta, both are in agreement that they can't guarantee that Jocelyn will never need hip surgery. Unfortunately there's no crystal ball that will give a definite answer to how she will grow and develop, but as for now, we are looking like we shouldn't need anything until she's around 6-9 years-old. If at all. These doctors also made the comment that "we would not be shocked if Jocelyn even walks one day."
Oh yea, I tried not to let my heart leap but that was inevitable. They are not the first doctor to say this to us, so their affirmation of this possibility is always so encouraging. I reassured them that her walking is not my ultimate goal. Of course Jocelyn walking would be wonderful for everyone ... her especially ... but for now, I need her to be able to get up from lying to sitting and be able to stand and pivot. Everything else is icing on the cake!
Either way, I'm bummed we couldn't find the source of Jocie's pain. I know she's going to have some regardless ... that's just one of many crappy parts to having cerebral palsy ... but to hurt all the time? Where do you find motivation to MOVE when you hurt? Makes this mamas heart hurt.
They told me that whatever I am doing, whatever Dr. Gupta and I are doing, to stick with it. Although they disagreed with the sites he chooses to inject with Botox, they said they couldn't dispute the results they had in front of them. Many of the muscles Dr. Gupta injects, these doctors simply will not perform. Not sure if that is good or bad, but I thought highly of them for suggesting that we stay with our current doctor rather than try to lure us to them. I truly appreciate honesty.
I'm pleased to have gotten a second opinion, appreciate their positivity and I LOVE that we don't need hip surgery!!
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