Every once in a while I get an email from someone I don't know that found my blog and they have a kid like mine, or it really blessed them because they just had a baby who was on brain cooling, or sometimes they have a question. This one was sent to me last week and I thought it was a good question, so I asked if I could address it publicly.
Hi, my name is S and my daughter is A. I think that I have told you before that I love your blog! You little Sadie is just like my A. A is 15 months and had pretty much the same story, we were also told to prepare for our daughter not to make it. She has been very similar to Sadie through the months, it has been really neat to follow your blog because Sadie is a few months older than Abbey. I have a few questions if you don't mind. We just got our rifton activity chair. A has a tendency to posture when she gets excited (etiher mad or happy), her legs go out straight and cross and her arms go straight and her head goes back and turns, she will go in and out of this. So when I try to use the chair with her, she will do it for a little bit and then she starts pushing back with her head and feet. I noticed that Sadie looks so great recently sitting at her chairs. Her legs look so relaxed and she is not tipping from side to side. I was just wondering, was she like that when you first started using the chair or did it take a while for her to get used to it? Also, does Sadie take any meds for spasticity like Baclofen or anything. Maybe it is just the pics, but it seems like she is a lot less stiff than I have seen from younger pics. This is the news I'm hoping for :) Abbey is driving me crazy with this :) The other question I have is...does Sadie play independently at all, I find that I can't even lay A on the floor for a few minutes, or she has herself arched and extended with her head twisted and then she gets mad.
Thanks for any insight you have...have a great day!
First of all, I didn't know what a Rifton Activity Chair is, I had to look it up...SO COOL!! Check out this link (there's even a little video). I sort of wish Sadie had a chair like that, but at the same time, I don't know what we'd do with it. Sadie doesn't spend a lot of her day "doing activities"...this seems more like something for school-age children.
Anyway, I want to address "posturing." Lately, Sadie has been doing a LOT of turning her head to the side and arching. It's so annoying, I agree. I think she does it partly because her mouth hurts from those teethies coming through and she wants to push her face into the surface of something. However, I've realized that whenever she is sitting independently, and without a lot of support, she will also turn to the side... primarily the right side. It's like she's working so hard to balance that she reverts to basic brain function, which causes her head to go sideways. And I think that's what's going on with your little one, A.
Lots of arching and looking sideways when she was really little
She still does it some when in sitting position
Even when balanced, there is still that tendency to look sideways
Please keep in mind, I am not a doctor, I don't even have a lot of knowledge or experience in brain damage or development, so these are just my opinions. What I've noticed is that Sadie's brain, because of the damage, is very primal. Her skills and her reflexes and her abilities obviously aren't evolving like in a normal child as their brain grows. So, basic baby things that may only last a few weeks or months in a normal child, take a lot longer to fade in our children whose brains aren't as highly developed. Therefore, we continue to see the ATNR posture (fencing pose) and the side head-turning...which I believe is residual from the ATNR. Sadie doesn't do the ATNR anymore, but it just stopped probably 2 months ago. And when we stopped seeing her do that, this head turning when she's doing something really hard started. I think the frequency of this positioning is also increased by spasticity.
You asked about Baclofen. For those that don't know, Baclofen is a muscle relaxer that helps kiddos like Sadie and A relax their muscles and not be so tight all the time. It's often started as an oral medication, but as the dose increases, there are other options, like a pump that is inserted that continuously gives medicine straight into the spinal cord. It's really helpful for a lot of people. We were on Baclofen for a few months (this was the medicine we ODed on when we went to the Emergency Room), but were prompted to wean off of it after our movement therapy proved to be so successful. Now Sadie takes no medicine for spasticity.
Movement Therapy has been our answer, and the reason why Sadie looks so much more relaxed in recent pictures than in earlier ones. The therapy is technically called Anat Baniel Method, and it is changing our lives. The purpose of the therapy is to retrain the brain to unlearn these primal instincts and reflexes (like straightening/crossing arms and legs and arching and turning the head) and relearn how to use the body more effectively. And it really works. I truly believe that Sadie's good posture and ability to sit so beautifully is because of this therapy. When we've seen various doctors, they'll "measure" her spasticity and say things like, "her arms are really tight, but I don't understand because her hips are so loose!" I always say it's because of a special private therapy that we go to.
We've been seeing Michelle Turner since Sadie was about 8 months old. And at first we didn't see anything "life changing," but we did see change. Michelle encourages what she calls intensive sessions, where you do daily doubles for 4 or 5 days (so you get 8-10 therapy sessions in a short amount of time) and this intensive approach really wakes up the brain and reinforces these new pathways she's creating. After our first session Sadie could lay on the floor and turn her head from side to side. We had never seen her do that before. It doesn't sound huge, but if your child is always looking to the side and arching, giving freedom to that head is a big deal. After a couple more sessions, Sadie started kicking with both legs while laying on the floor (whereas before she would only kick one at a time, like she was trying to start a motorcycle!). After our session last summer, we hit a breakthrough. Sadie's hips released. All of the sudden it was possible for us to actually put the bottoms of her feet together and have her legs froggied out wide. And she's never tightened back up. We recently did a session in October, and after the third or fourth appointment, we came home and I laid Sadie on the floor and she brought her knees up so that her feet were flat on the floor. So, I mean these are little changes to most people...but HUGE for us.
The day after our first session in our last intensive with Michelle - Sadie's legs have never done that before without being propped.
Sadie does play independently. We have a toy bar that is made out of PVC pipe and her toys hang down above her while she lays under them. She bats at them and they rattle and make noise. Recently, she's starting very carefully and purposefully reaching and pulling the toy closer to her and trying to get it into her mouth. She is an amazing kid. But her brain has had a lot of help with this Movement Therapy. Even her therapists notice after we do an intensive session that Sadie has calmed down, she's more purposeful with her movements, and that her spasticity has decreased.
S, I don't know where you live, but I would encourage you to see if you can find someone from that ABM website who is trained in this therapy near you. If you are close to Phoenix, I would encourage you to get in touch with Michelle Turner and arrange for a trip out here. I know she has people come see her from all over the world. It is money out of your pocket, but you won't be sad you spent it (plus it's really nice out here this time of year!). Please let me know if I can help you, if I can get more information for you, or if you want some advice even for fundraising. I would love to see your little girl break these posturing habits (without Baclofen) and be more comfortable and able to enjoy her AWESOME seat!!