3 Options for Walking

Em started physical therapy here in Utah last week. She has been out of physical therapy for 10 months due to financial restrictions when we were in Georgia (AKA each visit costing $400+ out of pocket!), and then the community based program dropped the ball on her and never got someone to our house to evaluate her. It was really all just a super frustrating situation. 


When she started preschool here I was under the impression she would be getting weekly PT at school, and then found out the school district did a huge cut on PT services, and she only gets it twice a month now. Granted her teachers do work on her PT goals each day in the classroom, she just isn't getting as much one on one time with the actual therapist. 

Needless to say after 10 months, we were really ready to hit the ground running with PT again. We got her setup with a new clinic in Utah, and she had her evaluation last week and it was miserable. Like made me remember why we hate PT so much. Em screamed the entire time and the visit was basically useless, except for some really enlightening information that the therapist gave. 

Our old PT had never had a child with holoprosencephaly like Em before, so she was kind of flying by the seat of her pants a lot when it came to making goals and working with Em. And she was always setting these huge goals that Em never met. She told us that Em should basically be walking about 12-18 months ago, and when that came and went, and Em still wasn't walking, Derek and I felt really defeated, like it was somehow our fault that this wasn't happening. 

Our new PT has had four kids with the same diagnosis as Em, so she's kind of a holoprosencephaly pro. Not really, but most of our doctors tell us that Em is either their first, or that they're going to go home and Google the diagnosis, so any doctor with background and past patients is a pro in my book. 

Our new PT told us that the goals that our old PT set for Em were ridiculous because Em was not emotionally ready, or physically ready to be working on those goals, so when the old PT spent 18 months forcing her to do things that she wasn't ready to be doing, Em wound up never building trust with her, and that's why she had a screaming fit every time. 

Our session today was like night and day. Em CRAWLED in PT. Willingly. Without screaming. It was amazing. She had fun and played, and for the most part really enjoyed it. There were a few tears a couple times, but out of all the PT we've been to the last three years, this was by far the best visit that we'd ever had. 

We talked a lot about walking and what it will take to get Em there. Right now her legs are really tight. They've always been like that, but the older she gets, the worse it's gotten. She needs some sort of medicated intervention to loosen the muscles in her legs so that her brain and her legs aren't fighting each other to walk. Right now Em has the desire to walk, but when she tried to get her legs to do it, they're too tight and she can't get them to move. So we have three options. 

Option one is botox. This would mean injecting her hamstrings with botox on a semi-regular basis so that her hamstring muscles can relax, and then when her brain tells her legs to walk, they can do it without being so tense. The results with botox are instant, meaning she would leave the office with relaxed muscles after treatment, with minimal side effects. 

Option two is an oral medication. The oral medication can take a few weeks to actually start working, and if it does work great, but there are also side effects. The side effects are Em being lethargic, or aggressive with behavioral problems. This apparently happens in about 20% of cases, and with our luck I could see it happening... and behavior isn't something I like to mess around with, so I'm hesitant on this option, but willing to try if botox doesn't work well for her. 

Option three is very invasive, and frankly a little scary for me. This one involves putting a port into Em's stomach, that connects to her spinal cord, and then Derek and I would have to administer a medication directly into the port that goes straight to the spinal cord, and then sends a signal to the muscles to relax. The benefit to this is that it doesn't have the side effects of the oral medication. The risks are that 1) it's a surgery to place the port. 2) That surgery involves touching her spinal cord, which means all the risks involved in doing something with that. 3) I feel like ports run the risk of infections which adds a whole new level of high maintenance to our lives. This is obviously my least favorite option for so many reasons, and is definitely our last resort. 

We meet with the doctor on January 5th to go over all of these options and which one would be best for Em. We'll keep you guys posted. As of right now, this girl is on fire with so many skills and is doing amazing. She gets up and keeps fighting the good fight each day. We really love her. 

4 comments

  1. My friend's little girl has cerebral palsy and gets Botox injections in her every 6 months to help her. They live close (ish?) by you now. I think in Kaysville. I can connect you guys if you want. You're such a good mom!

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  2. We just started PT last week and my son wanted nothing to do with the lady.
    She was super nice but will have to learn how to entice him :)
    Good luck with the new PT! Sounds like small blessings are falling into place.

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  3. Hello! I am this friend! We do live in kaysville and Brynne is my almost 5 year old with Cerebral Palsy. She is super tight as well and has been getting Botox every 6 months since she was about 18 months old. It has been incredible!!! She would never have been able to sit without it and she walks with assistance. Our other option is baclofin (I'm assuming that's your other option) and our amazing doctor at primary children's agrees that we should keep up with Botox as long as it's doing as well as it is. She gets it every 6 months but can do it as often as every 3 so we hope to get 4-5 more years before we move to oral baclofin and then a baclofin pump. I'd love to hear where you're doing PT and where she goes to school! We had some trial and error with PT and have to take summers off because she gets over therapied. We also do the National Ability Center in Park City and they have done amazing things with Hippotherapy(horses) for Brynne's balance. Email me with any questions! I don't know anything about what your sweet daughter has but I am happy to help any way I can. Justin.Melissa.W8@gmail.com

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  4. If you are ever relocating again you might want to consider California. I have a physical disability and here we have places called Regional Centers all over the state. They provide services to children and adults with developmental disabilities. I had PT 2x a week my entire childhood with no out of pocket expense for my parents and could have had OT as well. They provide independent living services for adults. We also have in home support services which has no wait list and allows parents to be paid providers for their kids with severe disabilities and which could help her live independently as an adult. My PT was very good. Just a thought for Em's long term future!

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