Friday, May 30, 2014

Feeling a little...crushed

It's been a whirlwind as the school year winds to a close.  Vivian has finished preschool, Elena finished her testing (yay! with no meltdowns!) and has less than two weeks left until summer break. Jason and I went on a short vacation, with his parents taking care of the kids.

Things aren't bad here. But I'm stuck in a bad mindset.

Elena is tight. I know that, I've seen it for a while--the emphasis on testing/studying/tutoring results in a LOT of sitting. Her crouch gait is markedly worse. She hasn't grown a bunch in the last six months, so it's not about that. I don't know what happened (besides school?) but...frankly, her posture looks terrible.

I am hoping that with summer coming, she'll have lots of opportunity to stretch, move, play, and have fun. After her ortho appointment this week, though...I can't help seeing the future in dark colored glasses.

Her hips "seem fine", her contractures "aren't that bad", and her joints "seem okay" and she is "pretty flexible". Sounds okay, right? That's what I thought. Her main PT keeps talking about how she needs a sustained stretching regimen (impossible during the school year, unless it's at night--again, impossible to implement successfully during the school year) and her doc agrees. If that doesn't work, I assume surgery is on the table to try to help her get out of her crouch so she can avoid a lot of pain later in life. But with surgery comes weakness, with weakness comes poor posture, pain, less mobility. Elena is such a happy kid and loves to play. I don't want to be negative but currently I feel in a very hopeless emotional state.

She has patella alta (high kneecap) and honestly, probably has for quite some time but with a new diagnosis/description it hits like a ton of bricks. Common with people with diplegic CP with crouch gait. So I did some research (with any research on CP, there isn't much that I feel really fits with us, as every case is so unique) and I found this:  Cerebral Palsy lifetime care--four musculoskeletal conditions is an article that covers patella alta, hip dysplasia, spondylolysis, and cervical stenosis.

Elena does have shallow hip sockets; I'm not sure if subluxation is an actual concern, but developing early arthritis is. She has lordosis, crouch gait, and has had a rhizotomy, all indicators of developing spondylolysis. I stopped reading in a pile of tears. I feel most of this article rings true for Elena.

If her gait wasn't so poor lately (it got worse in the last 4 months or so) maybe I wouldn't be so emotional. And when I've reached a breaking point enough to write about it, things tend to turn up, so I am hoping this is true. As she gets older, and disability sinks in, I see her less likely to try new things and mix herself in a group setting. Not entirely-it could be that she is saving energy, or is smart enough to know what she likes and does not like to do-but to me, it seems like some of the "can-do" flame is burning out.

She hears all these suggestions from therapists, doctors, and Jason and I-things to hopefully make things better or keep bad things at bay. I'm afraid what Elena hears is "YOU ARE NOT TRYING HARD ENOUGH TO FIX YOURSELF". That isn't the message (!) but I think that is what she thinks it is. I'm trying to listen and learn and help her to use her body as best she can so she can do as many things as she wants to do.

Without going into too much detail (b/c I'm tired and emotionally drained right now) it looks like the short-term plan is night stretching, possibly botox (hamstrings, adductors, and calf/soleus? I don't know), massage with the intent of bringing the kneecap down (manipulation of some kind, it's "not supposed to be painful" but it sounds like it is), and a new stander. And fun stuff, but this isn't a fun-stuff kind of post.

Please comment if you know about this stuff. I'd love to know what you have done, or what you've told your kids, or what worked (short/long term) or what didn't. Any info is appreciated.


11 comments:

Anonymous said...

Hi AMY I RECENTLY HAD BOXTOX IN HAMSTRINGS CALVES SOLAS AND GASTROCTOCS DO YOUR RESEARCH ON THAT. I SAID NO TO IT BECAUSE I WAS ONLY GETTING 3 TO 4 WEEKS OUT OF IT. NOW I HAD NO CHOICE BUT TO GO BACK TO IT BECAUSE OF POSITION OF RIGHT FOOT AND ANKLE. I ALSO READ THAT IF YOU HAVE MUSCLES INJECTED AND TAKE A BREAK LIKE I DID THEN YOU COULD LOOSE MUSCLE LIKE I HAVE

MELISSA

PLEASE LET US KNOW WHAT HAPPENS

Just the Tip said...

Hey Amy, I just met a mom who adopted a little girl with CP, and they live in Louisa. I know she just took her to NJ for some surgery that no one would do here, but it was pretty basic and has had great results. I can ask her what it is.

As for the spondylosis, I just found out yesterday I probably have ankylosing spondilitis, i'm not gonna lie, i'm pretty upset about it, and it may be the cause of my crohn's disease.

We have been dealing with new medical issues for Peyton, and it seems like no end in site.

I understand your feeling drained, completely.

Anonymous said...

I think it's the SPML surgery (Dr. Roy M. Nuzzo, NJ or Dr. David Yngve, TX). I would get in touch with them.

Good luck,

Kat

Anonymous said...

There's also a group on FB, SPML Selective Percutaneous Myofascial Lengthening

Anonymous said...

Hi Amy,
Don't worry. Elena's extra tension could be from stress and weather shifts. Is it warmer there? That can make my muscle tone change. Right now my shoulder blades are tighter than usual,especially my right, and most of it is from my collage prep classes and homework where I have to sit for hours(metal chairs are killers on my tailbone and pelvis ugh). I am always able to get my body back to a more healthy alignment. What I have done is find stretches that I can do on my own with no help from an adult or a PT. Maybe finding things that Elena can do on her own for her body that are enjoyable will help her feel like she is "doing enough" and will boost her confidence. As for trying new things she may just be like me where she likes things to be consistent and knows when something is just going to be a drag physically. Or maybe she is afraid of doing a movement "wrong" If she hears people telling her to do so many different things she might be in conflict over which movement to do. I know adults who have bone issues but do okay and still walk rather well. botox and surgery are always options but I tend to look for natural joint supplements and dietary supplements that relax my muscles and reduce or reverse any joint damage. Try to have her do more things physically,at least keep her moving if you can't stretch) and during times when she has to sit have her move her upper body around like a little dance and that will keep joints from locking/getting tight. Go the more simple natural route before you do surgery since a surgery cannot be undone. All I know is I am 20 with SDCP and I never got any of the bone issues I was supposed to get so there is a lot of hope for Elena.

btw this blog might help you

Anatomy Of A Faun blog

(I hope the link works since I just learned HTML code/tags) But they talk about a whole range of CP related issues and most of them have spastic diplegia cerebral palsy like me and Elena. One of them also had the SDR Elena had.

Anonymous said...

HI AGAIN AMY I KNOW I ALREADY POSTED HERE BUT I HAD ANOTHER THOUGHT FOR YOU. IN YOUR ZOO POST YOU MENTIONED THAT ELENA JUST GOT NEW AFOS ARE THEY HINGED? IF THEY ARE THAT MAY ALSO MAKE HER CROUCH MORE.

FOR MYSELF I ASKED ABOUT GETTING HINGES AND I WAS TOLD THAT I WOULD CROUCH MORE BECAUSE THERE WOULD BE TOO MUCH MOVEMENT AT MY ANKLE. ASK THEM ABOUT IT THEY USUALLY TRY TO GET THE NEW ONES RIGHT BUT SOMETIMES THEY HAVE TO TWEAK THEM.

I THINK I WILL READ THAT SITE THAT SITE THAT THE LAST COMMENTATOR MENTIONED. AS I TOO HAVE SDCP AND I THINK IT MAY BE HELPFUL

MELISSA

Kerri Ames said...

I don't have the answers and my child doesn't have CP. But as a mom who does have a child with complex issues I want you to know that I do get it. That feeling of pushing them but not wanting them to feel inadequate. The struggle of surgery vs not. There are no easy answers so just know you are not alone.

Anonymous said...

In response to Melissa's comment about hinges: if the AFOs have hinges KEEP THE HINGES!! The hinges are so much better than no hinge. Before I got the hinges I had no concept that I actually had an ankle. Having the hinges gave me much more flexibility long term! I do remember after I got the hinges my gait did change,my gait would change after any new AFO was given to me since my body would have to readjust and that could take a long time. I didn't have a crouching issue because of adductor lengthening, but I would appear tighter. My PTs showed me ways to hold my feet that would help with the extra tension. CP can be effected by a whole range of things, one month my brain will be super hyperactive with my body tight and hypersensitive, the next month I can stand still for really long periods without holding on to any walls. My parents didn't unstained that my CP can even change day by day so on a day when I was particularly tight my parents would complain "Why am I paying so much for your stupid PT if you are so tight. What I am I doing wrong as a parent?!" etc which really didn't help because I felt I wasn't doing enough in PT or something like that, and I had my own problems to deal with so having the pressure of my parents guilt made things worse, then the next day I could go up the stairs in a nice way and they would be all "How did you do that??" You don't need to be alarmed by every single change. Choose your battles carefully with CP Amy. When Elena hits puberty her hormonal changes my also effect her gait etc. When Elena tries new things, do these things require her to go up high? Many people have a built in fear of heights/fear of falling from something called the "Moro Reflex" so if I was on a high up play thing on a play ground my muscles would go berserk with tension from looking down(I have CP and will avoid something if it makes me tighter).
I also liked the "Anatomy Of A Faun" blog. Check it out!

Anonymous said...

Hi, I just noticed in your older post that you said Elena was in pain from her new AFO. Her AFO may not hurt anymore but perhaps her feet are able to shift inside the AFO creating an odd sensation and making her crouch more to compensate. I'v heard of this problem with AFOs in hemiplegia CP before. The doctors would just need to check to see if her foot moves out of place in the AFO about 30 minutes after putting it on. Elena probably wouldn't be aware if her foot is shifting or not. That may be the source of the recent crouching gait and if the sensations she gets in her AFOs change on different types of ground,(pebble,sand) it could make her not want to try new things because something does not feel right.

Anonymous said...

Is Elena still using her night splints?/Dynasplint at night? If not, maybe that is part of why she is crouching. Maybe she should go back to wearing the splints if you stopped. I would say the extra sitting is also making her more spastic. Sitting can cause extra neck tension in CP too.

marie clare said...

Try Dr Nuzzos surgery if you can, have seen alot of the kids in my sons school (we are in NJ) have much better long tern success with it than with botox. One 5 year was not sitting at all due to spacisity in his legs and is now sitting independently and getting into sitting by himself.