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Friday, May 01, 2009

Crushing Worry

Some times being a mother just truly sucks. I feel so inadequate for the task today.  Ellie has been pale and tired since the Cranial Sacral weekend intensive. And in the afternoons her eyes are in a somewhat sunset position. Sunset position of the eyes can be a sign of pressure on the brain. Her head circumference has not changed, she is not vomiting and her eyes dilate fine...

Today if she is like that in the afternoon it's off to the doctor.

She has been perky in the mornings though not at her baseline. The CS people say she is working stuff out and that it's normal to be tired. Dave thinks it's neurotoxins that have leached out of her legs from the botox and into her brain. He swears this happens every time we do botox which she had two weeks ago but has not needed for one year...

I am really kind of done with all interventions at this point except I think The Scotson Technique which is so so so very gentle. Cranial Sacral as it turns out is NOT gentle. Botox is NOT gentle. I think all these things have caused Ellie's body some shock which is draining her further. 

We have not been doing the Advance therapy for over a year. It takes time each day and I have been working and we have been making strides on other fronts with Ellie. But I am going to start it up again. *I want to bring them here to Boston to show me the latest advances in that therapy which has helped, along with the nutritional stuff, Ellie the most out of anything I have tried. It is restorative versus aggressive. It seems to honor the child's body in a very gentle and congruent way. It is also the only thing that has not produced ANY bad side effects. Remember in earlier posts how I described all of children's medicine as choices between lesser evils? Well nothing has changed...

*If you are interested in coming to the sessions that we have with them email me. I am thinking that we will do it this summer. When I get a date I will post about it here.

I am overwhelmed and crushed under the weight of my choices for Ellie. Managing and safe guarding someone's precious and deserving and beautiful life is tough going. I feel that weight right now and can't help but feel I have been having missteps for a year. 

But here are some of my recent discoveries on the nutritional front that are a good evolution of my understanding of how Ellie's intake of nutrients can help her heal her brain - which is how I approach anything that goes into her body:

Coconut oil. This is a saturated oil - as it is solid at room temperature - it melts at 76 degrees. BUT recent studies have shown not all saturated fats are created equal. Coconut oil is a good fat: anti microbial, anti viral, antibiotic.  It has a lot of great stuff in it for the nervous system too. So I have replaced Ellie's daily dose of flax oil with pure, organic, UNHYDROGENATED, unheated coconut oil that I bought at Whole Foods.  She is doing great on it.  It is also very healing as a lotion for the skin and one of the purest things you can put on the skin. I have been using it as a night cream and it's awesome. Just make sure if you try it you get the organic unprocessed stuff that I highly doubt you will find at Walmart.

As it turns out almost all Flax Oil on the market has some degree of rancidity. Figures right? I had picked Flax because when Ellie was younger the fish oil seemed to make her reflux...  Ugh. Mama -0 / universal forces of darkness - 1

So now she is back on Fish Oil and it is going well - just 3cc's per day. You can buy fish oil that is "Pharmaceutical Grade" which means that all the mercury is processed out of it.

A big realization I am having is that a gentle approach is so critical to my little girl whose system is delicate. And when I say delicate I don't mean it's not strong. But think about it. Ellie has never eaten anything fried, processed sugar, caffeine other than in the NICU in the first two weeks of life. Her system is really sensitive and she is hypotonic inside and out at the moment. And she is small for her age - though I am proud to say she is now on the second line up from the bottom on the typical kid, NOT born three months early weighing 2.9 pounds, growth chart. When I lift her these days I have to go more slowly - her muscles have not caught up to her weight and neither have mine. Slow and easy and careful is how I am feeling these days. Having a kid with this much trauma and danger has had me on an adrenaline rush for years and I am depleted from that pace. I think the road now has to be a one about pacing. Which is a nice change. When someone is on the edge of death there is no time for slow and gentle - it's all fight and fight some more. We were there for a long time. Realizing we are not there now is a good thing as well as an adjustment. I always say to Ellie when I have to do something to her that she seems hesitant about - like brush the snarls out of her hair - "Gentle Mama" and make the sign for "touch gentle" and she relaxes. I need to remind myself to be gentle too on every front especially with my outlook on life and how to balance it all. I guess Spring is a time for transition and it takes an angry burst of energy to break through the frozen thresh hold to grow and evolve. That's where I feel I am at, at the point of changing once again. Change is hard.

In my next post I have to tell you about FPIES. Which are food sensitivities that show up somewhat like allergies and only a few doctors pay attention to.

Love and kind thoughts to all parents out there under the crushing weight of raising a child with multiple medical issues.  

Addendum: I picked her up as school today ready to go to the ER. But, though she is tired, and her eye lids slightly droopy, she did not infact have sunset eyes. Dave recalls clearly that every time after BOTOX that in roughly 10 days Ellie gets really tired like this. Maybe he is right that it is taxing on her and after that amount of time it leeches into her system. Great right. Dr. Webster always says the only risk of the botox is risk of no effect. I think he is wrong. None the less, taking her to the ER where they will put in an IV and subject her to radiation is something we will wait on. She was able to pay attention. She was signing the entire song "A You're Adorable" to me on the way home and in the absence of no other symptoms (though fatigue is one) I think I will keep a close eye on her and see. 

Feel like I am walking on the razors edge - again. Don't think I will EVER get used to it.


10 comments:

terriblepalsy said...

Thanks for the info on the coconut oil. I'll have to see if we can find some here.
I hope Ellie is okay. We haven't done botox for a long time as it really didn't work all that well for Moo and the cons outweighed the pros.
I think you are on the right track with Advance. I wanted to ask you now that some time has gone past, whether you are still happy with the perc surgery?

Kathryn said...

Hi Jacqui,

Thanks. the only thing I am happy about the PERC surgery is the fact that we did that and not the traditional lengthening. But we only got a few measly months out of it because Ellie grew so much. I won't do that again. At this point it has to be Advance and or stem cells or energy healing - non invasive non invasive is my new mantra. I hate putting ellie through so much. The botox works very well for her - we got a year out of the last one - so that is cool - but here are side effects and that is not cool. And god knows the long term effects. so I am not going to do that again.

Hold off on the PERC surgery as long as you can. When ever you mess with the tendons they are weaker for life.

xoxoxo

ANewKindOfPerfect said...

You are so right that it is a fine line with our little ones. They are so fragile, even though they are strong! It's amazing how much tiny things affect them, much less something big like the cranial therapy or botox.

I hope she is feeling better soon. Glad her eyes are better!

Mam√° Terapeuta said...

Hi Kathryn, I totally agree with the non invasive mantra. I think every little stress or toxic we put into them, stop them from healing.

I'm totally against Botox. We don't need it now thanks to ABR. But, we did it 3 times. My daughter did have side effects, something called 'flu like' effect.

And I know you can bit the universal forces of darknes!!! Just go with your instics :)

Bird said...

You know, when I think about which of the things I've tried with Charlie, the ones that I feel best about are the ones that honor his body and his time line. I love ABR and I also love Feldenkrais, which is led by the child. I'm seriously wondering how much therapy we will pursue after he turns three and early intervention stops.

Danielle said...

I've thought about switching to coconut oil for my own cooking, but there are some things I am not so excited about with it. I have not made up my mind yet. And, in other news, was it not your fabulous internet intern who found you the definition of FPIES? LOL :)

Anonymous said...

Hello Kathryn,
Just wanted to tell you how much you inspire me with your thoughtful posts. I am really pulling for you, Dave and Ellie. I appreciate what you said about the adrenaline rush of learning and trying out so many therapies and treatments for Ellie vs. the potential benefits of just letting your field lie fallow for a time.
I wish you continued strength on your journey, thanks for sharing it with others.

BusyLizzyMom said...

I don't think the worry ever ends, just when you are over one hurdle another jumps out at you.
This sensitivity you describe is true. I wonder is it me being too cautious or being controlling as others call it or is Elizabeth's system so sensitive that the slightest change throws her overboard? Is it that we are more aware of our children's' bodies?
We have been using coconut oil too for Elizabeth and I think she tolerates it much better.
I need to back in the habit of using Slippery Elm I would love for Elizabeth to be off her tummy meds.

Jennifer said...

Hi Kathryn,

I'd love to learn if Advance may be able to help our preemie too.

Arianna has many eating problems (well, one big one, she won't eat) and drastic mood swings. They're considered out of the rhelm of normal for her age.

I'm not far from you in RI so if you do a class I'd like to learn more :)

abby said...

Hi Kathryn,

I'm happy to talk to you about FPIES. I know far more about it than I ever cared to learn. Hallie's system is beginning to heal from some of the sensitivities/allergies, though cow's milk remains a big one for her. But like Ellie, Hallie has a system that is acutely sensitive to everything and this affects her mood, digestion, reflux, tone etc etc. I just wish that her peds would look at her systemically and wholistically...