Pediatric Botox Injections for Spasticity Q&A

Disclaimer to this post, I am not a medical professional, I'm simply a mom sharing her own personal experiences. There are probably things written in this post that aren't scientifically accurate. Consult your doctor and therapy team to see if this is something that could benefit your child. 

Kinsley has been getting Botox injections every four months for the last fifteen months. I've had a lot of people asking me about it the last several weeks and so I thought it would be great to compile all the questions into one blog post so that I can refer people to it as needed to answer all of the questions. If you have more questions after reading this post, leave them in the comments and I'll add them in later!

How old was Kinsley when you first started using botox?
Kinsley was three-and-a-half when she got her first set of injections. Her therapist in Georgia had been talking to us Botox since she was about 18 months old, so we knew that it was always a possibility. What ultimately pushed us to do it was when Kinsley had been diagnosed with hip dysplasia, and all of a sudden there was a chance we were going to have to do a very invasive operation for her. There was a possibility that botox could prolong that operation and also help her hit more physical milestones, so we jumped in with two feet and never looked back.

What does the botox actually do for Kinsley?
Her abductors and hamstrings are very tight, which put a lot of strain on her hips, causing her hip dysplasia. By injecting botox into the abductors and hamstring muscles, it essentially turns these muscles off so that it puts less pressure on her hips. Because these muscles are so tight, it also effects Kinsley's gait (stride, the way she walks, etc...), so when she does walk, she is "scissoring", meaning she steps on her toes, her legs cross over each other, trips on her own feet, etc... Turning off these muscles means that she is able to get a better range of motion in her legs and walk more efficiently without scissoring. Because those muscles are turned off, it also gives opportunity for the quads and other muscles to "turn on" and get stronger, because they have to make up the work for what the abductors and hamstrings currently aren't doing.

What other spasticity management have you done?
Months before we did botox, or knew about Kinsley's hip dysplasia, we tried oral Baclofen at bedtime. This is a muscle relaxant. Our PT at the time recommended it because of how hard it was to get Kinsley to sleep, and there has been a lot of success in kids with spasticity issues taking it and being able to relax and sleep better while on the medication. More sleep meant more energy, which meant potentially more progress in therapy, so we were excited to try it. Kinsley was the 1% of kids who experienced insomnia while on the drug, and she literally didn't sleep for an entire week. After that she went off the drug and we haven't used it since. 

At her appointment for botox injections last week, her doctor mentioned that we might want to revisit Baclofen again in a year. Some kids who experience insomnia on the drug when they are younger, outgrow that side effect when they are older and do better. 

We know that botox is not a long-term solution since kids will build a tolerance to it, so while it works for now, we know other things will be needed in the future. Kinsley will likely have an operation in the next year or so where they go in and make micro-tears in her hamstring muscles (which would make the hamstring longer, and make it heal longer than it was before surgery, making it more flexible and less tight longterm) to alleviate the tightness. 

Other options that might be possible in another year as she gets bigger is a Baclofen pump. This would involve surgically placing a pump of baclofen into her spinal cord, giving her body a continuous supply of baclofen to make her muscles less tight. This wouldn't have the same insomnia effect as the oral medication and is something that is a possibility in the future, although I haven't done a tone of research on it at this point. 

Derek and I were talking after her last appointment of what our "order of operations" would be for things we would try in the future would be. We agreed 1) Oral Baclofen again, 2) micro tear surgery on her hamstrings, 3) Baclofen pump, 4) Full blown hip dysplasia surgery. This is in our opinion the order of least to most invasive. 

How spastic is Kinsley?
I honestly didn't know what to write for this, so I asked our PT and he said that she is moderately spastic, but on the lower end of moderate. There are kids that are definitely a lot stiffer than she is. She has a lot of mobility in her hips, a little more in her knees, and is the stiffest in her ankles. 

What tips do you have for parents getting injections for the first time?
Seeing Kinsley get the injections is the most traumatic part. Lots of doctors have to hold her down while she screams super loud. She gets about 6-8 injections every time we do it, so it takes about 5 or so minutes of screaming to get them all done. Unlike a normal vaccine your child would get, these injections have to be placed in very specific spots, so it takes more time and precision than a normal shot. 

A lot of kids get sedated for the injections, but because Kinsley bounces back and stops screaming the second the doctors stop touching her, we haven't looked into sedation. There's lots of risks with sedation for Kinsley due to her brain malformations and just the unsurety of how all of that will react with sedation, so we personally air on the side of sedation as little as possible, although it's a totally normal and great route for other kids and families in different situations. 

After the injections, just get your child up on their feet as much as possible. We aim to have Kinsley in her stander for about an hour a day (while she's in it she plays with slime, play dough, coloring books, etc...), keep her leg braces on for the entire day (helps with keeping the leg in the right position and keeps everything stretched out), and work on active therapy things like cruising, pulling to stand, and walking for about 10-15 minutes a day. 

How long do you see the benefits of the injections?
The amount of botox they give your child depends on how much they weigh. Kinsley was really small when we started so she couldn't have that much. It meant after about three months her body was like the tin man and we were anxiously waiting for our next appointment to get here. Now that she's older and bigger, her doses are bigger, and they seem to last the entire four months between appointments. That paired with the fact that she's probably getting less tight over time as she continues to get injections, grow, stretch, strengthen, and become more function-able. 

What milestones have you seen as a result of her getting Botox?
The first time she got injections she started climbing up the stairs a lot more. Then the second time she started using her first gait trainer where she was strapped in all the time. The third injections led to her using her gait trainer without all the straps. The fourth injections led to her pulling to stand and cruising along furniture. The fifth set that she just got hasn't taken full effect yet, but she started pulling herself up onto her chair today and turning herself around and sitting down all by herself. Dying over that. 

If you have any more questions, please feel free to ask in the comments and I'll add answers as they come!

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