5. A 6-year old and …Botox? (3min read)

If you read my Blog #4 about Genell’s new hearing loss diagnosis (click here to read it), then you may have seen where I mentioned that she also had Botox injections.  Yes, a 6-year old got Botox….and this is why.

Genell was born with extreme spasticity in both her arms and legs.  She started receiving physical therapy when she was 5 weeks old while she was still in the NICU!  If you’re still not sure what I mean when I say “spasticity”, basically Genell was very stiff.  Here’s an example of what I’m talking about.  The picture on the left was when she was 3 weeks old.  The picture on the right was when she was 3 1/2 years old.  Her arms are pretty much in the same place.  Get it now?

GenellTightArms

The benefits of PT and OT (Physical Therapy and Occupational Therapy)

The good thing about the picture above is that her arms were able to get more mobility as she got older.  Of course, physical therapy (PT) was a big help with that.  In addition to PT, she also received Occupational Therapy (OT).  If you’ve ever met a pediatric occupational therapist, they might describe their job as helping kids play with toys.  And that is just what happened.  During Genell’s early years, she had to be taught some basic concepts.  Some examples were holding a bottle, transitioning a toy from one hand to the other, and using her hands and arms to activate toys.  To say the least, the OT definitely helped and check out this picture that was taken on 4.16.2013, a few months after her 2nd birthday.  This was the first time she held her bottle independently!!!  This was a very exciting day for us and a major milestone for Genell.

GenellHoldingBottle

When you need more than PT (Physical Therapy)

But what happens when you need more than physical therapy?  Well, I found that out in 2017 at Genell’s first PM&R appointment.  PM&R stands for Physical Medicine and Rehabilitation.  This was a new specialist for us because I had never heard of a PM&R prior to our visit.  Mind you, Genell was 5 1/2 years old at the time of this visit, but I’ll save that rant for another post (Arg!)

At the appointment, the doctor performed a range of motion assessment.  Genell was lying on her back on one of those leather patient tables with the crinkly paper liner (Genell loves the crinkle sound, so she was very enthusiastic about the visit).  The doctor started her assessment at the top of Genell’s body.  She checked for head control/head lag by lifting up Genell’s arms while lifting Genell’s back slightly off the table…like this (and no this isn’t Genell).

HeadLag
(Image from https://library.med.utah.edu/pedineurologicexam/html/03month.html)

So what about her legs?

Well, I’m glad you asked!  Checking the lower body was a little more intense than her arms.  Genell was lying down again, and the doctor took one of her legs and bent it at the knee.  I could tell Genell was already uncomfortable, but the part of this exam helped explain a lot!  While still bent, the doctor then held the back of Genell’s thigh and started moving her leg back and forth.  The back of Genell’s thighs were very tight!  Tight to the point where Genell started high pitch screaming.  As a mom it’s tough seeing your child endure exams like this, but you have to remember, it’s all for a good purpose and the end result will ultimately benefit your child.  The same thing was repeated on her other leg, and the exam only took about 2-3 minutes to complete.

The next step….Botox Injections

Genell had an outpatient surgery on 2.27.18.  This included getting her ears examined (click here to read more about that) and also the Botox injections.  Genell was under anesthesia, so she did not feel a thing.  She had about 6 injections in each leg for a total of 12.  The injections only took about 5 minutes to complete, but since she was having her ears looked at as well, the entire surgery duration was about 2 hours.

It’s been 8 days since her Botox injections and I can already tell a difference!  When I change her diapers, there is not much resistance when I’m holding her legs.  She’s still not able to hold her legs up on her own, but my back sure is thankful that there is less resistance!  Genell will be going back to the PM&R for a follow-up visit in a few weeks, so I’ll be sure to update you on that!

I hope after reading this you have a better understanding why and how Botox injections can benefit our awesome rock star kids 🙂

cropped-twinmommel-2.jpg

 

 

 

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3 thoughts on “5. A 6-year old and …Botox? (3min read)”

  1. Hi Melanie! I just wanted to say you are amazing for going through the lengths that you go to in order to support and best care for your children. I know you probably feel overwhelmed at times, (not that you seem like it, I just know I would be stressing the heck out on a daily basis) but you are doing such a great job being a mom, nurse, advocate, educator, and all the other hats you wear!
    Thank you for sharing your journey.. not only for moms who have special needs children, but for every mom who wants the best for their kids and has to fight for it! You are amazing!

    Liked by 1 person

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