Spastic Diplegia

I am sure most of you who read this blog regularly already googled "spastic diplegia" or followed my links to understand it better. But for those of you who did not, and you still have no idea what this means, I am going to try to clarify it all more here. As much as I can, anyway. Believe me, I am no doctor, but I have talked A LOT with them.

So to start off with the basic of basic: Spastic (tight) diplegia (2 limbs, almost always the legs) means that Lara's muscles in her legs, hips, and pelvis are too tight. This is due to brain damage. Her muscles are fine, so I no longer refer to this as a 'muscle disorder' like I used to. The messages from her brain are getting messed up, causing her muscles to respond inappropriately. Spastic diplegia is one of the several different forms of cerebral palsy, and is also the most common.

Spastic diplegia is most often caused by a problem DURING the mother's pregnancy, and is rarely a result of a problem during L & D or shortly thereafter. It is often associated with prematurity, and Lara was likely (not definitely) subjected to preterm labor at 27 weeks gestation.

There is little involvement of CP (cerebral palsy) in Lara's upper body. What is there is due to compensation of balance. Babies without spastic leg muscles sit up straight and tall with bent legs. They are nicely balanced on their pelvis. Because Lara cannot bend her legs and her hips are over-extending, she tends to hunch when she sits. You can try this at home-it's good exercise. Sit cross-legged, then extend your legs straight out in front of you. You won't be able to help your back curving and slouching in this position. Lara sits just fine on her own, however, and is able to play in this position really well. But because her upper body is in an unnatural position, she has to work a little harder at balance, which she often does by tightening up her arm muscles. This should correct itself with continued development.

Many people ask me if Lara will be able to walk and what sort of treatment she will undergo. As a result of this question, it seems I have not stressed enough the mildness of Lara's CP. First, you have to understand, that there are different types of CP. Even children with the same type will exhibit different symptoms. For instance, many children with CP have seizures, crossed eyes, hearing problems, and reflux problems. Lara has none of this. From my research, however, it seems these problems are more typical of babies who were NOT carried full-term (Lara was full-term). Usually, when we are told someone we know has CP, we automatically think of the more severe cases of CP, not realizing that there are many forms that can go unrealized. Lara has a very mild form of CP. So far, it only appears to truly be affecting her legs, and we are not seeing any involvement in other areas, mental or physical. Lara WILL definitely walk, but she will do so late (she already is), and she may always need to walk slowly as it will take extra work to control her balance. She probably won't need anything like a walker, but she made need a cane or something for outdoors walking.

I don't forsee that Lara will ever need to go through any treatments (such as Botox injections). Doctors have differing opinions on which patients are good candidates for that and which are not. I hope to steer clear of it while she is young, and when she is old enough, she can make those choices for herself.

I have mostly been pleased with the way everyone has handled the news of Lara's CP. I was afraid everyone would start treating her differently, but besides a few sad attitudes, noone has changed at all in how they talk and play with Lara. I have noticed that some people tend to baby her a little bit, in terms of how they hold her, and this REALLY irritates me. I don't think it's because of the CP, though, I think it's just because Lara is really cute and kind of small, and some people honestly are not sure how to treat babies who are in the middle of newborn and 2-years. I realize they would probably have a better idea of how to treat Lara if she were walking and playing more easily; she would look like her age a little better. Nonetheless, she plays well in her own way, and cognitively, she needs that independence...

Anyway, we don't do anything special with Lara besides the therapy and upcoming AFOs (and a few creative exercises). We really don't. She doesn't take special medicine, she has no other health concerns, she gets everywhere she needs to just fine on her own.

She is a typical 16 month old, just not as mobile. And that will come with time.

I'm not sure if that helped anyone's understanding, or made everything a lot more confusing. But if anyone has any questions, I am totally up for giving answers. I appreciate questions, anyway. It makes me feel that people care about Lara, so want to have a clear idea of what is going on...so it doesn't bother me in the least.