E - Day 39 / N - Day 14 (Take 3)

Improvements have been more subtle but still seeing progress.

With N placebo and mind over matter is a huge contributor so it's nearly impossible to say how much has to do with her positive attitude changes and how much is mineral related. Perhaps there is a lot of attitude and some extra boost with the minerals.

In any case, she continues to appear stronger. She has done some longer unassisted standing from sitting position. She is also doing more long sitting (when prompted to make a conscious effort).

Placebo for E is unlikely. He doesn't understand what the minerals are for and probably doesn't even realize he is taking them. He too seems much stronger. What I am noticing is he is CHOOSING to sit up and with his feet in front of him (somewhere between long sitting and tailor-sitting) a whole lot. This has never been his preferred position, more so on his knees or 'w' sit. It has been pretty cool to watch.

His heal cords and hamstrings don't necessarily seem any looser, which is a bummer. He has not regressed but progress hasn't continued to the point where N's was when hers released, yet. He seems like he may have just had a growth spurt, if so, that would explain it, but I haven't had time or energy to keep track with measurements.(and we are both currently sick)

We will keep moving forward, soon to be adding whole body vibration therapy, and will consider possibly increasing his daily trace mineral intake to 15ml 2x/daily.

Whole body vibration and cerebral palsy: a systematic review

E - Day 31 / N - Day 6 (take 3)

E has been getting super tired every day in the late afternoon for the past several days (since at least day 27). He has not been taking nap for quite some time now but is now, and he puts himself there. He gets extremely tired and cries hysterically until we can agree to lay him down in my bed with his favorite nap time setup. Because it is so close to dinner and his typical bedtime, we wake him for dinner and expect he will stay up a little later than normal but no, he wants to go back to sleep. We are assuming he must be getting ready for a growth spurt. Normally this is a fine thing, with CP slow and steady is much preferred.

Aside for being exhausted in the late afternoon, he is clearly showing increased strength in his core. He also does equine therapy once a week so I don't want to discount that but definitely seeing some, almost sudden, improvement that makes think, "wow!" Like he crawls up on our counter high barstools (with backs)...which is not new, but then proceeds to not only climb onto the counter but does so sitting perched, up right, on the edge with his feet dangling over the side. He sits up there like it's no big deal but my brain has not yet caught up to the fact that he really can do this and so it blows my mind every time I find him sitting up there. Crazy!

Today he also sat at the edge of the bed, which isn't totally new but just so straight and sturdy AND he used his stomach muscles to get into sitting position from his back instead of rolling over and using his arms and legs. Pretty impressive and a definite improvement.


Today when I helped N stand up out of her wheelchair to move to her walker I was amazed by her strength. Usually she needs a lot of my strength to help her to standing but not today. I used one hand and very little effort. I know this isn't really very solid scientific evidence of progress but these is my parent observations which is cause for excitement over here.

Getting stronger every day!

What is PGP & Which Minerals?

PGP is the Preemie Growth Project run by Ida Briggs (some incredible work, motivation, and determination. I am forever grateful). You can read more about it here The Preemie Growth Project


The trace minerals we have been using are now available on Amazon (they weren't a few years ago when N was on them previously) PDCM 72+. Others may work just as well, this is just what was used in the project and since we had such success with them I see no reason to try anything different. PDCM 72+ Trace Colloidal Minerals on Amazon I have nothing to do with this company and have no particular inside knowledge on the safety of these minerals versus others, I only know what has worked for us.

E Day 29

Walking with flat feet!

He has such tight hamstrings and has such bad habits in the walker that we hadn't yet seen him walking with his heels down but tonight we did!

E walking with flat feet - day 29




Compare to just a few weeks ago before we started minerals.

Take 3

Not sure if I will have the time and energy to keep up on this blog but having been off the minerals for a loooong time we are going to give them another try.

2 years ago we added another child to our family who also has CP. E is now 5. 3 weeks ago we started him on the minerals and like N his heal cords are clearly releasing! This brought me back to this blog where I was reminded of the incredible progress N had on the minerals both times. Unfortunately she now is beyond released at the heal cords (happens with surgery too so likely would have happened whether released by surgery or minerals) and with her growing like mad (she is 12 now), which means growing faster than her hamstrings can keep up with AND heavier on her ankles, she really needs her ground reaction DAFOs to be at a 90 degree angle to even give her the possibility of standing up straight, however, that is not currently what she has. Both N and E are scheduled for SDR (Selective Dorsal Rhizotomy) surgery this summer. Now we prepare for great success!

So here we go. (I will try to track both kids on this blog)


E is currently on DAY 26
N is starting back on DAY 1

(pics of E standing at sink taken on April 5, 2017 & April 13, 2017)

Here are recent videos of the kids, originally taken for the purpose of having pre SDR surgery levels. 

(the dates are wrong on the videos, was actually March 19th but doesn't really matter)

Starting Over: Day 12

Can you believe it?! She gave us 6 steps today!!!! AND we got it on video! The first video shows her taking 4 steps tonight and the second is where she pulled out SIX!! So cool!!

Starting Over: Day 11

Let me back up for just one moment.

Thursday, January 23, 2014, Day 8:

"And we have 4 independent steps again!! No straps repositioning legs this time. The steps are not very controlled but 4 steps is still a nice starting place!! WTG Peanut!"

I was/am impressed and really surprised. I am excited to see where she will go from here.


Here are some videos of her using the walker today. She really has built up a lot of strength but as you can see in the videos she is still crouching (some due to lack of strength and some due to tightness in her hamstrings, I'm sure) but over all I think she is doing well and look forward to using these videos to look back at later as we continue to track her progress.

Most importantly, she is beginning to see herself as a walker and is working hard to get better. She also will go for the walker rather than crawling, that's important.

Starting Over: Day 7

No real specifics to report but it is quite obvious to me that N's strength and balance are greatly improving. She's been using the walker for almost a week now but on school days she doesn't get much time with it since we only have one for her to use at home right now. Still she is doing very well and occasionally I have her walk our hallway using the walking sticks (and my assistance) just to be certain that she is using her legs and body to walk rather than her arms. I'm impressed. She's not where she was 10 months or so ago when she began taking those independent steps but certainly better than she would have been doing even last week.

I also believe her hamstrings feel looser though more so on her right leg than her left.

I have also found her choosing to sit or lay with her legs extended lately instead of pulled in which is really interesting and pretty cool. That straight leg time is so important.

And another important thing to note is her attitude toward walking has become more positive again. She is trying to do more things standing up as she thinks of herself as a walker. So important!

Starting Over: Day 3

Well, you would think that after 9+ months of no posted updates and having left off at one where N took 4 unassisted steps that I'd have some incredible news about progress...but I don't.

As a matter of fact, we had soon after found that we had plateaued...then N began losing motivation. We stopped the minerals believing there was no reason to give them if there wasn't anything left to come from them. And then over the past 9 months someone grew quite a bit, which is not so great for kids with CP. The end result? Loss of muscle strength, tighter hamstrings, loss of motivation, and we were 2 weeks away from her undergoing hamstring release surgery and possible de rotation of her legs. (but btw, her heal cords did not tighten back up, she still stands with a flat foot)

I ordered the minerals again hoping it would help with recovery after surgery, they arrived just 3 days ago. That very same day a trusted friend and therapist told me that she had begun to think differently about the de rotation surgery and perhaps N's situation is not severe enough for such a big surgery (it is something the doctor wanted us to consider too but agreed that we had several months to consider, and now here we were less than 2 weeks away with a possible plan change). My heart dropped. I don't want to make the wrong decision or a rushed decision. I immediately started her back on the minerals and decided to reschedule surgery for 7 months down the road (knowing I can always cancel it) and decided I wanted to change our approach to therapy.

In short, I want N using a walker and on the minerals. I could give a long explanation as to why but don't feel that is necessary right now, but will if asked.

In any case, it is Saturday morning. N started using a walker on Thursday and started the minerals on Thursday as well. This morning my mind is blown; her hamstrings feel MUCH looser than they have been! I am so incredibly excited about the potential of her experiencing the same kind of huge, quick progress again but this time with a different approach. I think the walker will help her tremendously and psychologically keep her motivated and seeing herself as a walker, as well as building muscles she wouldn't be sitting in a wheelchair.

I do not intend to keep a spreadsheet tracking progress daily this time but do hope to update this blog again on occasion.

Praying we won't even need to entertain surgery a few months down the road.

DAY 115

N took FOUR unassisted steps today for the first time!! No walking sticks, no knee immobilizers, COMPLETELY unassisted!

DAY 114

N took TWO unassisted steps today for the first time!! No walking sticks, no knee immobilizers, COMPLETELY unassisted!

DAY 112

For the first time N put herself on the potty with ZERO assistance!! She crawled to the bathroom counter, pulled up to standing, cruised (side stepped) to the other end, undid her pants, pulled them down (while standing and holding on), positioned herself closer to the commode, then used her hands to lift up and back to position herself properly. After having some assistance upon completion, she has brought herself back up to standing off the toilet and to the sink and made attempts at redressing herself! Later she went from spilt kneel to standing using the counter to help pull up BUT she has not even able to position herself in half kneel position on her own before!!! She's a rock star!!

DAY 109

N was positioned to half kneel by PT with left leg forward, she showed tremendous improvement and strength while maintining proper positioning even while she twisted at the waist to watch a video placed behind her.

 

 

Day 107

For the 1st time today N was able to put herself into criss-cross-applesauce without any assistance! She did it several times to show us her "new trick." She was so proud…as she should be!

 

 

 

DAY 104

Increased muscle tone in her glutes and abs are undeniable!! Really impressed and surprised by her tone and muscle definition.

Her handwriting has noticably improved…perhaps from more trunk/core control??

DAY 101

N is pulling up to standing and cruising a whole lot. Today she did so in the kitchen and cruised from one end of the counter to the other so she could steal a cookie of the plate :) She then spent maybe 30 minutes standing at the coffee table playing with a friend without being placed there as a therapuetic activity. Her legs were crouched but I'm believing this has more to do with signaling from her brain as opposed to strength and ability.

DAY 95

N playing XBox Kinects Disneyland. We bought a NEW, CLEAN can, used table tops drilled through the bottom (inside and out) to stabilize it, put N in wearing knee immobilizers so she can safely practice indepence balance. She loves this game!

 

 

 

 

 

 

DAY 94

Today at therapy N walked some with the sticks (with assistance) and then the focus turned to helping her get into better alignment. As you can see in these videos, she is wearing knee immobilizers to help with straight legs instead of crouching, snow shoes to keep her from putting her weight forward (and easier to slide on the carpet seeing that knee immobilizers complicate walking), and a swash to help her from clinching her knees and thighs together and give her better hip alignment (you can see on the video of her walking with the sticks down the hallway with me her left hip keeps leading out).

So in therapy with all these supports to help with proper movements she practices walking without using her hands for support by having the therapist behind her for balance support if needed and then with the giant ball, also for balance but would definitely not work to support her weight as it would cause the ball toroll away from her. She's a bit tired by the 2nd video but I wanted to share it because I expect to be able to show improvements in the near future.

DAY 94: So Now What?

So what next?

Are other kids with CP likely going to start walking with sticks or crutches so soon after starting on the trace minerals?

Two very good questions, and both questions I want to answer as publicly as possible to those interested in N’s most recently discovered progress; I only hope that my “parent” response will do N’s therapists more educated thought process justice. I’ll try my best but this will probably get a little long so bear with me.

When we adopted N at 3.5 years old from Ukraine, she could only sit up if in a ‘W’ sit. Her hamstrings were very short and tight, as were her achilles. However, having seen other kids in similar or even worse condition be put on walkers immediately upon coming home, I was certain she would too. We even went to Shriners and they did give her a walker right away, but we never did end up using it. Why?

The therapists we work with approach this area (and likely others, I’m sure) of getting kids with Cerebral Palsy up and walking, much different than most other therapist and doctors. I know this for certain because I have not met anyone online or off (and I know hundreds of people online through the adoption and special needs community) that have withheld a walker from their child with CP and this is not what their therapists have been suggesting for their children. The variety of doctors and school therapists we’ve dealt with are not in agreement either…and let me preface this by saying that I, personally, am not saying that every other way is wrong, I’ve seen lots of kids make great progress and begin walking independently after using a walker, but the approach by which we have agreed to pursue is different.

Here are some of the thoughts that support withholding the walker…

• When you first give a child with CP a walker they usually use their arms, instead of their legs, to stay up; the walker moves and their little legs try to keep up, there is not much control like “true” walking.

• Usually the kids legs look a mess when they are handed a walker. They may be up on their toes, legs turned inward, knees/thighs clinched together, legs crouched, etc. A body walking in such poor position isn’t going to last 80 years like that; it wasn’t designed to. To my understanding, many of these kids “walking” with such bad positioning while young will find themselves in wheelchairs permanently by high school or young adult age. The body begins to wear down.

• With improper positioning and learning to walk using their arms to hold them up, kids are less likely to get to a place where they will become able to walk independently, using just their legs with no upper body support.

I ’m sure there is more and could have been better explained but I think that explains it in a nutshell.

So rather than hand N a walker just to get her up and moving without the assistance of another person we have been approaching it this way…

·        With the use of a stander or knee immobilizers (and AFO’s of course), we get N up and standing so her body is bearing her own weight, which everyone agrees is important for strong bones, but proper positioning is key to building the right muscles for standing. Kids with CP will use various other muscles than the ‘typical’ person to do things, such as standing or walking, to compensate for their weaknesses, tightness, and spasticity. Building the proper muscles for each activity will help the child to be able to do it more typical movements.

·        Using and building the proper muscles will help bone growth to be more typical. For instance, N’s left rib cage on the bottom the bone curves outward. It has been getting better as she builds her core strength because the muscle is now pulling down, as it should, and “molding” the bone properly, when previously the muscle was not strong enough to do so. This would be the case for all the muscles in the body, as they pull or are used, they mold the bones, and of course, we want her bones to be molded as the body was designed to be.

·        As with using the muscles more typically and building strength, the same would be true for stretching muscles and tendons. If we want long hamstrings, we need to be stretching the hamstring regularly. We can spend ten minutes a day doing a stretching routine or we can do activities daily that support proper positioning that “naturally” stretch and build muscle where the body needs to for more typical movements. Using a walker with improper body positioning would be the opposite of this.

·        There is also the component of needing to teach the brain how to operate the body. Think about someone who has not used a muscle in a long time, maybe been in a coma for a month (have a friend like that) and then needing physical therapy to not only build the strength to walk again, but remembering how, getting the correct message from the brain to the muscle. Even with N, when we first adopted her, she could not crawl using alternating legs but did more of a bunny hop, bringing both legs up at the same time. She had to learn how to dissociate those legs to work one at a time. We are still working on that for the split kneel. With learning to pump her legs on the swing, therapeutic techniques are used to help her identify which muscles to contract in order to produce the proper in/out movement of her legs. So with various activities, using proper body movements, such as riding an adaptive bike, standing, or even walking with knee immobilizers on, help retrain the brain for proper use and movements.

Again, that’s just some of the thinking in a nutshell (my best parent understanding and explanation, anyway).

Here is a pic of N's legs when she is relaxing. It's certainly not how we want them to be when she is standing. So in addition to AFOs we use strapping to position her legs correctly throughout the day. This is especially important when she is doing any standing or walking (as she does with assistance for therapy).



And here are some pics of her ready for bed. She wears knee immobilizers to give her nearly 12 hours of straight leg time (especially since she spends the majority of her day sitting or crouching) to get that lengthening. She also wears her SMOs to bed (if she had new AFOs she'd be wearing those instead but we have been holding off on ordering those just yet because of her rapid progress on the minerals). And she wears straps that help rotate her legs out at the hip as they should be. She sleeps on her stomach to not only help with the straight legs (because of gravity) but mainly to stretch her hip flexors, also made short by crouching and sitting all day.

With all of that said, this is why when N started taking the trace minerals, she was not already using a walker but rather, the wheelchair…and still is. The minerals have done a TON of good for her that cannot be denied. For one thing, N’s achilles were so short and tight, she could not be positioned to standing with flat feet. Now again, a difference of approach, she was not placed into typical AFOs that would “force” her into a flat foot position like most kids with her CP issues would be. The reason being is that it would have further compromised her ability to get out of the crouching position. Instead, N has been wearing AFOs with a built up heel lift on the underside. So just like we typically wear shoes with a bit of a heel, so were her AFOs. The thought process to support this approach is that our desire has been for N to learn to put her weight back in her heels and to get away from toe walking, all the while beginning to stretch her achilles and hamstring little by little. The goal was to eventually work our way down to a flat standing (for lack of knowledge of the technical words for that lol) once those areas were lengthened and she learned to put her weight back in her heels she could wear typical AFOs. Much to our surprise and tremendous delight, less than 3 weeks on the minerals N was suddenly able to have flat feet while sitting and when positioned to standing. We were able to ditch those AFOs with heel lifts without needing heel-cord surgery!!

But the thing is, of course every kid and situation with CP is different, there is no way to say if N would have been using a walker that should would or would not have accomplished what she just did using the walking sticks this weekend. My best guess is that she would NOT have. She likely would have had much worse positioning, not have learned the balance she has because she would have been practicing on the walker incorrectly, and would have needed her arms more for balance…with walking sticks that could be pretty disastrous.

So now what? Will we give her walking sticks and just let her go (not that she’s really ready for that anyway but..)? No. Actually, her therapist would not be thrilled to see her just take off with the sticks and still be somewhat crouching, or become too dependant on the sticks for balance. However, we are all in agreement that we need to change up some of the things we are working on to get her to be able to use the sticks in a more proper alignment with the goal of going down to one stick to none. Will I still sneak a few trips down the hallway with N using the sticks each day even if her therapist doesn’t completely agree, and I don’t know if she does but she will read this anyway (LOL!!)? Hell yeah! I don’t want to get into a therapy battle, and I’m not talking about between me and the therapist…God, I love her therapist…but I mean, practicing movements that could be opposite of what we are trying to accomplish with proper positioning and therefore further stalling progress (with that “progress” being PROPER independent walking).

I have to say though, this has been quite the confidence boost for N…for all of us. She WANTS to not just do it, but do it right, pushing through her heels and extending her legs and back the way we’ve been working on in therapy. The motivational component is key to her success…to anyone’s success. She needs not just to be motivated but with the right goals in mind, not just walking but walking in a way that will get her to be able to run outside with her friends, to dance, and to be able to do all these things for many, many decades. This most recent success only confirms to me that we have made the right decision in our approach to N’s therapy. I see her walking using the sticks for limited balance assistance, very soon. I also think that before the school year is over, she is going to stand up and take some steps from her chair at school with or without permission…so if we want her to do it with the proper alignment, we best bust our butts to get her to that point because when she’s ready to walk, she’s gonna do it and not one of us will stop her…I wouldn’t even want to try.

DAY 93

Just for kicks I gave N walking sticks to try walking WITH assistance to see what kind of gains she may have made. Much to my surprise she was practically walking with the sticks on her own! I was holding the straps of the walking sticks but even balancing was mostly on her own, with minimal assistance.

THEN she wanted to try it on her own...AND SHE DID IT!! N walked using walking sticks COMPLETELY UNASSISTED!!! This shows a tremendous increase in core strength (in order to be able to balance) as well as leg strength.