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Saturday, June 14, 2008

Sensitive

Her system is sensitive. I know that. It's frustrating. I don't do all the nutritional gymnastics because I like to. I do it because I have to. It would be so great if I didn't have to worry about food combining, the richness of the food, etc. Some days there is nothing I wish I could do more but to share the food I eat with Ellie. But it's not possible because so many things make her sick. Tonight is a case in point.

I have been feeling in my gut that her diet needs to change. I have stopped her from being vomit baby and I even think the Slippery Elm is helping her intestinal tract heal. I definitely notice her smelling less acidic after she has it. So all that is good progress, has kept esophaegeal cancer at bay and transformed her into a relatively healthy little girl from the very sick little baby she was.

However, there are still big challenges like the fact that her motility is snail slow, if it moves at all on it's own. I am seriously worried about her little beleagured liver. She is on Cisipride to increase her motility, Zantac to limit acid production, Protonix to inhibit proton pumps, and Myralax to keep her moving. With all that she still deals with chronic constipation and extremely slow food processing. Her brain injury resulted in a hypotonic type of cerebral palsy in all her limbs and especially her trunk. That hypotonia (or low muscle tone = muscle weakness) doesn't stop on the outside, nor in the big muscles like the biceps, but extends to her whole body right down the the sphincters that control the speed of her motility/digestion which effects the absorbtion of nutrients and flushing of toxins from her system - very serious important business to get right for health, quality of life, development in a child as well as overall longevity. With the diet I have had her on, along with all the meds, I have seen her stomach empty faster than ever before, which is still slow compared to how it should be. So that's good to an extent.

But we found out yesterday why, why, why she was so sluggish and pale and getting even more floppy over the last two weeks. Her Depakote(Valproic Acid) level (she takes this for seizures) was 165. That is 65 levels higher than the top of the therapeutic range. And we have been giving her the prescribed dose each day. So no ear infection, no mysterious virus, no brain damage, but drug overdose. As I write this my brain is saying the f word over and over and over. I am mad at myself, mad at the whole thing. f word fword fword...

We caught it, it's coming down. I think it went up because she has been very constipated so her Myralax dose has to come up. Also she has grown but because she has been doing so well in terms of digestion we did not increase her Cisipride though we could have but opted not to - why - see comments about her liver above.

Now we are adjusting/reducing her Depakote dose and on Monday I have to have a long talk with her GI doc to take another look at all those drugs. We got a new gigantic bottle of Myralax and gave her some to which she produced a rabbit pellet consistency small bowel movement.

Below I will describe the drug interaction tango we are performing:

Ellie is on time release Depakote capsules because the Depakane syrup (aside from being totally acidic and horrible on her tummy) was very unstable in her system and she had a couple of break through seizures on it. So we switched to the crystals, which are way easier in her stomach and stay in the system longer - which has it's pluses and major minuses. The Depakote is effected by her Cisipride and her level of constipation as well as weight gain. Increase the Cisipride, the Depakote level will plunge. If she gets constipated it will climb. If she gains weight the Depakote level will drop unless the Cisipride is raised. There are even more dynamics except my brain just went into the fword mode just recounting what is here. and again fkfkfkfkfkfk.

After we found out that her level was through the roof I started reading up again to try to find ways to try to jump start her motility using nutrition/food. Not that there is anything on this specifically so I have to look at different food and how binding they are as well as if they are super foods like garlic and if that will help. I am seriously thinking of juicing small amounts of parsley for her and trying her on Amoranth instead of using rice milk all the time... It feels like I am cutting my own trail through the wilderness that is Ellie's specific nutritional needs. Cutting a trail to an unknown place with unknown benefit.

The fact is it's not enough anymore that she is not vomit baby. I want to wake up her digestive system. And that is not going to happen on the diet she is on, as good as it is it is starting to feel limited. She is 5 and half now and gained 10 pounds last year as well as 4 inches in height. She is actually on the growth curve for heigth and weight - at 2% (the regular growth chart, not the one for CP kids). My point is she is getting bigger and I feel a need to keep up with her. I don't want her to be so dependant on all those drugs.

I want to introduce another protein source specifically because she is on allot of goat's milk and milk in general is binding to the chronically constipated especially. So I gave her a little tahini (sesame seed paste) with her peas tonight for dinner, against my better judgement (note to self - stick with past MO of only trying new foods in the morning). Three hours later she vomited up the entire dinner, completely undigested along with a huge amount of clear mucus. When you see that much mucus in someone's vomit it is a sign of food allergy. Now Ellie has been tested for nut and other allergies and come out negative. But we are going to have to revisit those tests.

So poor Ellie! In the last 24 hours she has had to have a urine catheter (to take a sample) two blood tests (so she is bruised on both arms) and vomited up her entire dinner, as well as feeling exhausted because of the elevated Depakote level. fkfkfkfkfkfkf!

I feel like we are back as square one, or really square three. And I have to add foods more slowly, like you would with a baby, try a teaspoon at a time building up slowly. Whenever I try to rush it with Ellie, it never works. I clearly gave her too much tahini. So now that is off the list. Bummer too because there are 190 calories in 2 table spoons full of nutrients. fkfkfkfkkf!

It's going to be a long night. I tried to give her some water after the first humongous emesis and that only produced more emesis. So I am waiting to give her more. She will inevitably wake up in the middle of the night - hungry as hell - and fair play to her. And I will feed her and hope to god she can keep it down.

Sensitive.

Frustrated.

4 comments:

Anonymous said...

hang in there.
Try a pinch of MSM powder in the food in the morning, it helps heal and mobilize the cilia in the throat and stomach. Also is good for regularity, too much will cause diarrhea but in the current state a little might be a good thing.
your chunky friend.... who is languishing on MV...

Rob at Kintropy said...

Hope your and Ellie's night improved? Our daughter is primarily using Pediasure (though tonight it's half-that/half-Pedialyte: fever & stomach patrol).

We do find that a teaspoon or two of acidophilus a day helps keep her to her version of regular (constipated, but without blockage - she also has low muscle tone). We turn up the dose when she is on an antibiotic (to control diarrhea) and cut back when she is not on an antibiotic (seems to help reduce some of the blockage vs. just constipation). Not sure if that would help with Ellie, but our two cents.

Again, hope you all got some rest?

Bird said...

Nanaslug recommended a new product that I'm going to try on her blog: nanaslug.livejournal.com I forget the name, but it's a fruit puree.

Have you investigated avocados? Also, I don't know about all her sensativities, but maybe chicken salad? We blend chicken, celery, and carrots together and that helps sneak veggies in since he hates those. Also, my MIL juices organic apples--skin, seeds, everything and we let him drink that. That works great for getting things moving.

And, as I've always said, Ambrotose has really helped kep things moving. We do give him a pretty chunky dose, though. Probably a Tablespoon a day.

Ok, you probably weren't looking for advice and just wanted to vent.

Kathryn said...

Anon-chunky friend - I have given her up to a teaspoon of the MSM and it has made no difference at all. A pinch is not going to do it. Not sure how much more I want to try with it due to sulfur content. Have fun languishing.

Rob- As predicted we were up between 3am and 5am hungry! Ellie kept some cereal down and no more vomits so it was the tahini. So doing a goat yogurt trial for the week and then onto the next trial... If all the parents of disabled kids were on an instant messenger service I am sure there would be lots of chat at 3am!!! I hope your little one is better too!

Bird - Ellie used to do Ambrotose - we got it from Linda Scotson. I will have to revisit that. Ellie gets half of one big avocado per day - it's great and she is able to tolerate it now when she wasn't able to before!!!

I am going to start juicing carrots and other things for her and I will check out nanaslug! Thanks for the link and the thoughts. I appreciate them very much!