Neurology Update

Sienna's new neurologist has ordered a follow-up MRI to see if there has been any progression in damage. She also took the time I desperately wanted to go over her impression of Sienna's original MRI images. I was extremely grateful for this and happy to hear that she also had doubts about the original "diagnosis". Another test she was able to order was the full genome sequencing. I think this is a great advancement in technology and look forward to seeing the results!

Saturday CP hack

When I come across neat ways parents save money by making their own specially adapted things or great deals, I will try to post them on Saturdays! I think it is wonderful to come together to make our kiddos lives easier on a budget. Anything marketed for special needs is outrageously priced...



The CP hack of the week is, swings! Here are two great ideas that I found on Instagram and Pinterest.


This one I think would be fairly easy to do!

http://www.pinterest.com/pin/207587864050406657/

 

 



The second one is with a frame which can be built. These frames for special needs swings cost a LOT of money! I would find out how to build my own for the cost of wood and bolts.

 

 

                                            

 

There are so many cool DIY options on Pinterest. I am an addict.....haha

 



Blessed

Sienna's standing walker was finally approved! She absolutely loves being mobile at a more normal height and she gets a very good stretch. Now we are just waiting to get her some better foot positioning AFO's or shoes. The model for those of you who might need to know what to ask for if you need one for your child: Rifton Dynamic Stander K150

 

 

 

 

 

 

 

 

Cerebral Palsy and Inflammation

I am not a doctor or a scientist but I know how to decipher studies and more importantly, every time I come across an article, I follow back to the source. This is because although I don't see it often, some people lose relevant info in their summary which can become misconstrued. I encourage all of you to verify what you read if your intention is to truly learn.

One study I came across indicated that chronic neuro-inflammation is seen in people with acute brain injury or stroke, even many years after injury occurred. See study here Although a powerful drug was injected directly into the spine to reduce inflammation, it set me to look for a natural and available alternative which would also cross the blood-brain barrier.

There are many things with anti-inflammatory properties such as Gotu-Kola, Aloe Vera, Turmeric, and fish oils. Before running to the local grocery store to buy these products, know that all supplements are not created equally. You want to do some research and find products which are tested, and free from common, often harmful excipients if you decide to try any of these.

Sienna has many of these things every day and I can honestly say that without them I feel, she would be worse off. One supplement called Moxxor I began to give her due to it's potent anti-inflammatory properties and evidence for brain growth in studies conducted. Moxxor appears to reduce pain for her especially at night. I can definitely see a difference when she does not have it. It is perfectly safe for children.

Tim Healy on Moxxor and child development:

View video here

 If interested or for more information... please check out my link in sidebar!

 

As important as anti-inflammatory things are, it is also crucial to avoid things which CAUSE more inflammation in my opinion. Examples are..

 

High fructose corn syrup, MSG, wheat, gluten, aspartame, and some studies suggest rice, tomatoes, potatoes, and eggplant are also inflammatory. See a great article about nightshades here.

This is one of the reasons behind her diet.

 

 

Not all children with Cerebral Palsy will have any visible damage to the brain because the term covers a rather large spectrum of disability and symptoms. Sienna has what is best described as underdeveloped myelin, so all of my efforts have focused on how to promote or stimulate healing in this area. 

 

Hope this information helps someone out there get a clearer picture of possible help for their child or loved one or even themselves.

 

 

 

 

 

 

 

Reference

Perispinal etanercept for post-stroke neurological and cognitive dysfunction: scientific rationale and current evidence.

Ignatowski TA, Spengler RN, Dhandapani KM, Folkersma H, Butterworth RF, Tobinick E.

CNS Drugs. 2014 Aug;28(8):679-97. doi: 10.1007/s40263-014-0174-2.

Dr. Google says....

As I am putting Sienna's essential oils down her spine for their various reported benefits...I notice I can't really follow her upper spine too well and have to push in to find it whereas the lower spine protrudes. At that moment it hit me like a punch in the face...I was devastated at the fact that her doctors had possibly missed yet another issue. Neuromuscular scoliosis as Dr. Google told me. I only believe this when it makes perfect sense and then further retrospective thought leads me to the fact that this has been coming! No one suggested bracing or checked her back even after the fact that when she was first diagnosed she was practically sitting on her lower back. (Therapy helped her stop doing this so I didn't associate it with back problems...) Besides with everything else to focus on how could I not miss something so important? I'm livid that they failed her here again BUT I choked back my tears and simply added it to the list of things to tell THEM she needs corrected. Head up...
Hoping I am over-reacting here.

Worldwide Cerebral Palsy Awareness Day

 

 

Cerebral Palsy affects more people than you can imagine! While my little angel can't walk or talk yet at 4 years old yet will smile bright enough to light the world, I ask you all to take a moment to have appreciation today and maybe every day! Look around at the simple things and the abilities and maybe even the people that you might be taking for granted and just fill yourself with gratitude.

This is surprisingly easy for me to do today and most days! Why? Because this little girl inspires me and has more strength, happiness, and motivation than most adults I know! She has taught me that each moment is precious and every achievement is to be celebrated and cherished. I am grateful she is healthy, progressing, and always has a beautiful smile and plenty of hugs and kisses to share.

Sienna truly does shine everyday!!!!!!!!!!!!!!!!!!!!

 

 

 

 

 

How I Make Meals on the Go

Some of what I have personally decided my girl cannot eat and why (without being technical...basically these ingredients were found to be toxic to developing brains and or are GMO or are just not good for anyone.) Instead of listing all references at the moment I am going to give this in a nutshell.

Gluten 
Aspartame
MSG
High Fructose Corn Syrup
Corn
Dairy
Tomatoes, potatoes, eggplants, (any nightshade family vegetable)
Unripe bananas
Oranges (too much acid for now)

Some of what she CAN and does eat (again my personal choice based on research) (mostly brain building ingredients and supplements are given)

Eggs
Organic chicken
Fresh fish
Squash-all kinds
Organic fruits-apples, strawberries, etc. 


Thanks to this wonderful little device I can puree meals for her on the go for less!

Infantino Squeeze Station

I love it!

Since she can eat soft small chunks, she sometimes does get food in this way. Blending it allows me to add some vitamins and is good for when we are on long trips to doctors or things like that. This girl eats a lot!

Some Equipment Options

Welcome newcomers and thank you for joining us! This blog started a few years back to talk about Sienna's experiences with Hyperbaric Oxygen Therapy. She had a lot of progress which is still present today. In other words she did not have any regression after treatment.
Now a few years later, I have continued to get a lot of continued progress through other means due to the high cost of HBOT although I would love to someday get more of this treatment for her.

So for now I will talk about her day-to-day life, share tips and "hacks" I have come across and share her progress.

I will travel back in time a bit today since it has been so long (busy, busy!)

In August of 2013, Sienna started a pre-school program where she made tons of friends and I just loved and adored her teachers. It was difficult for me to leave her in someone else's care but she was in good hands.

During the school year they used a Rifton Dynamic stander for her. This is what it looks like.

The purpose is to have them in a full standing position which stretches them and the wheelchair wheels give them mobility!

Here is Sienna when she was younger in her walker. 

What a proud moment this was! Now she will walk back and forth however she needs to be turned around when she runs into the wall, couch etc. but practice is practice!!

The trouble with spasticity

At a recent neuro appointment for Sienna, I was disappointed to hear my daughter's neurologist say that currently they DON'T focus on neuroplasticity. Not sure why I was disappointed. I suppose because I was hoping I wouldn't have to continue to pursue an extremely expensive trip to the Family Hope Center where some neurologists have chosen to focus on exactly that and or return for more hyperbaric (both of which are truly needed) By this he meant, HE and maybe everyone else in this practice would prefer to cut, force, and or inject a solution prior to addressing the root cause. Sigh.

I have been considering options to reduce Sienna's spasticity. We all know if we have read this far that hyperbaric did in fact do this, and would continue to garner improvements at the source. However, we also know it is extremely expensive, not covered by insurance (because it works...) yeah I said it., and frankly just not something I have the energy to fundraise for again as of yet.
It is definitely in the works.

In the meantime, what is the least invasive way to help her now? I have been doing a few things. They are helping but what moves me to post today is the sad state of neurology according to her current physician.

"The future is moving towards biomachinery, we aren't focusing on the brain" he says. Really?

Because neuroplasticity wasn't discovered centuries ago, because Pedro Bachyrita didn't completely rehabilitate his own father after a massive stroke, and because you in all your expensive, and extensive college education never heard of the concept? You are a neurologist. Let's recap the definition of that for a moment....

A neurologist is a doctor who specializes in treating diseases of the nervous system, which includes the BRAIN and spinal cord. 

Oh the irony....

anyway, I found an interesting article which takes a dual approach. Both neuroplasticity and possibly Botox or other standard method.

So if interested, have a read..

http://physical-therapy.advanceweb.com/Article/The-Magic-Cure-for-Spasticity-Reduction.aspx