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Monday, December 18, 2006

Nutrition and the Brain Damaged Child Part II:

Responses to the excellent comments, Ellie’s diet, Food Combining and More.

First of all, when I read Emma’s, Jacqui’s and Dani’s comments I just thought to myself, This is what I LOVE about blogging. The discussion can be informed and enriched by various points of view. Instead of answering all individually I thought I would put it in this post. (Emma, I will get back to you on the primrose question. I do take it as a supplement and it's great. But I know someone who knows a lot more about that and am trying to get her to chime in.)

If you are just coming into this discussion on nutrition you can read my first post on it
here and see some of Jacqui’s comments at her site here.

Body Weight and CP
On the topic of the right weight for children and people with CP, Emma makes an excellent point. There is a balance. I wrote that children with CP are better off on the lighter side. Which I believe is correct. Emma in her comment illustrates this with her experience being on the heavier side. However, she also makes a great point that when she was too thin she was getting skin breakdown on her “bony parts”. This same thing happened to Ellie when I first took her off all the sugar and bad oils. She lost some weight. To give you an idea of this, when she was 18 months old and on the hideous j-tube and on the medical diet as described in my first nutritional post, she weighed 19 pounds and she was about 24 inches long. She got a bad stomach virus around this same time and was hospitalized for 8 days and lost one pound of weight. Then I took her off the bad diet and she lost another pound. At 17 pounds she was Ellie no butt as one of our friends liked to joke. And her tail bone paid for this. We had to watch it really closely and add extra padding to her seats. Luckily we weren’t doing a lot of sitting because she was on her tummy. It was hard to see her gain weight but over the course of the year she improved dramatically. Her reflux decreased and constant vomiting and gassiness, she moved more and started rolling. She was in general happier because she wasn’t feeling so awful all the time. She also started sleeping better only waking up 2-3 times per night versus 7-10. Believe me this makes a difference. We were then pretty quickly able to switch her back to a g-tube, which only goes into the stomach. The j-tube reached right into the intestines and was painful for Ellie all the time. Emma’s point is well taken that there needs to be a balance. This discussion needs to be outside the realm of any Vogue-esque like weight ideal. That is not what it’s about. Ellie now at 24 pounds has a bum and it is a good thing on all counts. It’s great to see her muscles developing and some fat on her thighs and full cheeks.

It took her a long time to gain back the weight and it seemed like between the new diet, the new therapy we were doing with Linda Scotson and the very gradual reduction of reflux and more sleep because of these things that she has been ramping up on all measures of health ever since. At her four-year appointment she had gained 7 pounds in one year and now she is 36 inches long and weighs 24+pounds. She also gained 3 inches in height and 2 centimeters in head circumference this year as well as many, many developmental gains. Last May she started to have seizures too but Linda gave has a theory on that about it being a response to the increased blood flow to the brain blowing toxic waste left over from the trauma and the bleed she had out of the small blood vessels there. That is another whole discussion.

Any way, no one could believe that Ellie would do so well on this diet including Dave. The diet Linda suggested and I put Ellie on is totally counterintuitive to traditional thinking. But as I mentioned in the other post it makes total sense when you compare an injured, weakened child to an invalid versus a star athlete. As I mentioned last time these high fat high sugar diets are what you would want to give someone who is highly physically active; their metabolism at high speed and excellent motility. NOT someone with the opposite conditions.

Ellie’s diet from the time she was about 2.5 to 4 years of age: Note that all ingredients are organic. Between ages 18 months and 2.5 we put her on a whole foods diet that was really rich in fat and high calorie and she did really poorly on that. Finally we came to the diet I am describing below after much back and forth between Dave and I and several discussions with Linda. This diet is counter intuitive if you have come out of the NICU experience or dealt with traditional nutritionists.

Morning Meal: Flaked Millet with Rice Milk and then we would add 2.5 gradually working up to 5cc (1 tsp.) Flax Oil and her vitamin. We also added the supplement Ambrotose that was recommended by Linda. It is supposed to help children assimilate the natural proteins in all foods. (If we could have used soymilk we would have because it has more protein, but Ellie is allergic to it. Rice milk is not optimal because Rice is acidic. But we needed the calories and she seemed to do ok on it. I am hoping to get her off it altogether. I have been experimenting with aduki bean milk. You can make milks from grains and nuts with a soy milk maker. In truth I have not spent enough time on getting her on a better “milk”. I could even combine rice and aduki beans to make a complete protein. And this is a nutritional project still to be completed.

Lunch (2-3 hours later when the cereal has been digested): Nanny Goat Formula. We started off using the goat milk formula versus plain goat’s milk because it has a balance amount of nutrients and vitamins. Ellie has done really well on this. If your child cannot tolerate soy, goat milk has a lot of protein and the molecules are smaller and more easily digested than cow’s milk. We give her actual goat’s milk from time to time and she even more easily digests that. Our GI doctor has told us that this is popular in Mexic but that the children end up with a vitamin C deficiency if they are only given goat’s milk.

Snack Meal #3 (2 hours later): A non starchy all vegetable meal with vitamin, Ambrotose and Flax oil added. This is food combining – you don’t want to ever mix animal protein with starch. This is not Atkinesque. For this meal I make her non-starchy vegetable and legume purees consisting of cooked red lentils (easier on the system than green) and carrots, celery, leeks, garlic. Or zuccini pureed. Green pea soup as well with carrots and celery. I also make her a mixed veg with kale, summer squash, spinach, carrots, leeks, and cabbage. This tastes great and I always ask myself why I don’t make it for Dave and I. Ellie has the best diet in the house. All of these things are very plain with no salt or spices and all very good for her. Starchy sweet vegetables, being non optimally combined with proteins and sweet make her reflux more. These include: sweet potatoes, butternut squash, potatoes, parsnips. We have tried all and all don’t do very well by her.

Now that she is so much bigger I have added in turkey soup for this meal. I take turkey thighs over chicken because they have more amino acids. I cook them slowly with a small amount of water, a couple of carrots, one clove of garlic and celery. Celery is great for digestion and adds a subtly salty flavor to the food. Puree this all up. Ellie doesn’t really like it so we bolus her. She loves purreed carrots and zuccini and will eat that up – it’s like candy to her I am sure. I am not sure the turkey thighs are the best thing at this point because Ellie is not sleeping great and seems more acidic. This will sound weird but I can actually smell the acid on her breath when it gets bad. She also seems gasier so I have stopped the turkey this week. I did add in avacodo with the veg puree – about a third of one and she seems to be tolerating that. Avoacodos are great, I give them to her raw so she gets some live enzyme and they are jam packed with omega threes and other vitamins. Linda I think would have her on no meat at all. But Ellie is type O blood and Type O’s need their meat. For more information on blood type and diet
here is an excellent book.

Tea/Dinner Meal #4: The last meal of the day one hour before bed we give her grain again and the rice milk. On this diet we don’t feed her at night. Recently in the last 6 months Ellie has been waking up in the night hungry. So we will feed her then and I increase her portion sizes. She has been growing quickly and her body wants food so we give it to her. I have been working hard on finding ways for her to tell me she is hungry and in fact give her that as a choice through out the day and if she picks it offer her food.

A note on portions and meals: For someone who has week digestion it is easier to eat 4-5 smaller meals than 3 big ones. The conundrum is that eating more meals speeds up the metablism and makes it more difficult to gain weight. But if you have a kid who can only handle small portion sizes, then you have to give them more meals. Or (sarcastic humor alert) just go the medical route and have their esophoguses’ stapled shut…

I had a hard time with portion sizes. I don’t have other kids and did not know what Ellie could eat. She went through a period 10 months ago now when she was eating a ton of food by mouth. I remember people saying to us, wow your kid ate all that, mine won’t. Ellie at this point could down one and a half cups of food in about 15 minutes by mouth. It was a great time to be alive. Sadly we are back to have her refuse to eat and be really distracted. There are a number of reasons for this but are off topic and will appear in another post I am writing about sensory integration. Anyway, it was then I realized what a good portion was. It was then we stopped calling it feeding time and calling it mealtime. It’s amazing when she does a normal thing how you see how far away from typical you can get. It’s like paradigm surfing.

A note on Rice: It is better for children or anyone with a compromised system to eat white rice versus brown because the husks of brown rice have mold in them, which introduces another toxin into the system that they have to deal with.

A note on Grains: I am a big, BIG fan of Millet. It’s one of the easiest grains to digest. Whole civilizations have existed on Millet as their staple food. It has a ton of great nutrients in it and won’t clog the intestines like rice can. If we can’t get purely flaked millet we get a multigrain-flaked grain cereal (with NO wheat) and use that. Mixing grains, other than wheat, is also very good because you triangulate all the good vitamins and minerals between the different grains. But if you child is having a hard time with digestion in general – start slow, start with millet.

A note on organics: We are big believers in organics. Literally everything we feed Ellie is organic. We eat only organic meat and dairy. Dave and I are not as religious about it as some people I know meaning that we will eat out at non-organic restaurants etc. But at home, especially with dairy and meat we eat organic. As a woman this is especially important and I tell all my friends if there is one thing they switch to organic on it should be dairy and meat because all the antibiotics, hormones and chemicals they put into the cows and pigs and chickens reeks havoc with the female reproductive system. There has been 100 percent increase in Lupus over the past few decades. I believe it’s from all the crap they put in food. In the patriarchal system many things that could affect women for the negative are overlooked and under valued. There are also limited studies on women. One way women can start to get some control back is to NOT purchase products that are especially harmful to them and ask their grocer for better products like organic meat and dairy and even feminine products without bleach. This should be a whole other post. It just galls me sometimes the crap manufactures put in products. Sometimes I think they do that because the big multinationals are trading and selling their waste products and need some where to put them so they put them into women’s jewelry and tampons etc.

A note on protein and when to eat it. This one is directed at you Jacqui in response to your thoughts on why Moo is not sleeping well. When I first read that on your site I wondered if he was getting a protein meal late in the day. Ellie has really slow motility. I wondered and surmised that Marshall’s motility might not be optimal either. That’s a function of weak sphincters I mentioned in my first post (something Jacqui is well aware of I am sure). This point about protein ties into the principle about sleep and eating. Protein takes the longest amount of time for the body to digest (oil slows motility down too). This is why we don’t give Ellie any protein after 3pm. (Now we just started giving her the turkey thigh soup at around 4-5pm and she isn’t sleeping as well and I am wondering if that is why – but this is new and there are other factors to consider like we are coming down on her seizure meds.). But if Marshall is getting a lot of animal protein (milk) right before bed his body will spend most of the night digesting it. This will interrupt his sleep and weaken him in general as his body organs won’t get to do all the renewals stuff they need to at night. Just a stab at trying to help here Jacqui. I myself don’t like to eat protein after 5pm because I wake up feeling bad and don’t sleep as well. If you have to eat late at night eat a piece of fruit which will digest the quickest. We can’t give Ellie fruit at night because it is too sugary and makes her very acidic. See how tough this is!

A note on palate: When you eat a lot of rich foods your palate gets very high tuned so that you continue to crave foods that “taste” good. To a highly tuned palate rich foods are more taste-full. Transitioning to a lower more naturally tuned palate can be rough at first because the less rich food may be tasteless to you until your palate adjusts. And palates do adjust. Try cutting out sugar for one week and rich fatty foods. Start eating more raw foods and simple grains by the end of that time they will taste a lot better and if you go ahead and eat cookie after that it will burn the back of your throat with it’s sweetness. Dave, god bless is adventuresome carnivorous Irish heart, did a fast with me one year ago. We were feeling really depleted by everything and worried about our health so we did the master cleanser for 7 days (DO NOT TRY THIS AT HOME OR WITH YOUR CHILD!). To break this fast we had steamed vegetables (bok choy, cabbage, carrot, butter nut squash with no salt or anything). It was the nectar of the gods. Dave ate it and said, “What did you put on this, it’s amazing!” This was the first time I think he ever had his palate tuned so low and he was right, it was an amazing meal. I made that meal for us again a couple of weeks later when we were back to our usual eating habits and we both noted how it did not taste nearly as good.

On-going journey
When we go to Advance in January Linda is going to show us a new protein source. We are at the point where we do have to change Ellie’s diet again because she is so much bigger. We will stick to the principles I am outlining but make some additions now that she is healthier. It’s important to note that she made all these gains on the very simple diet of grains, goat milk formula, non-starchy vegetables and water. Even Ellie’s GI doctor, when Ellie started to thrive on this literally said to me, “You proved me wrong.” He’s a great doctor from Mexico and was open to me trying this new diet because in Mexico there is no Neocate and Polycose. He admitted that when there he encourages the mothers to give their kids sugar. Sugar and fat, as we have proven are not the best way to get these kids to gain weight. When Ellie was on all of that she gained weight but she did NOT gain inches in height and her development slowed because she couldn’t sleep, and was sick all the time. On this simple diet she has been thriving and steadily going up hill on all fronts.

Disclaimer
I want to make it clear that I am NOT a nutritionist. My only background in nutrition is a life long interest, lots of books (a Good Will Hunting approach), and being fortunate to have some close friends who are either herbalists, aroma therapists and some who have followed alternative diets their whole life and saved themselves from cancer and many ills.

Last Disclaimer
If your child is thriving on some of the foods I said were bad, don’t mess with it. Ellie had a massive injury at birth and was very, very bad off after that for a long, long time. We had to figure out a lot of things I hope most people never do. I am only recounting what helped her in hopes of helping other parents.

That said, I truly believe and practice these principles with Ellie and she is better for it. We have her blood nutrient levels checked each quarter because she is on a reflux med that is highly watched – cisipride and all her vitamin levels are coming out consistently well. There’s lots of proof that she is doing great. But still we are not allowed to stay complacent. As she grows her body’s dietary needs change and we have to figure out what to do all over again which is the point we are at now. It’s a good problem to have.

8 comments:

Emma said...

I think I will probably write a post somewhat related to all of this in my blog tomorrow. Two things that strike me here, one I'm again thinking I should look into the finances and see if I can afford organics (maybe if I get the job I'm interviewing for next week) and two if I do do for blood work after Christmas (high blood pressure, urgh gotta have a full blood count, liver and kidney function tests if it doesn't improve) I will be very interested to see what it brings up and what my blood type is - I don't know that I agree with the blood type affecting what you should eat argument but it might be an interesting experiment. The other thing is about the weighing too much vs weighing too little balance - I know a CP-er who walks (hemiplegic cp) never uses a chair. She is underweight and I rarely see her now as she lives in Spain but she gets thinner and thinner and has been known to comment several times that she is "getting fat" or needs to lose some weight. I have at times been concerned that she has an eating disorder and so I guess what I'm trying to say is that sometimes friends/family/loved ones/doctors need to be sure that low weight is a nature or a cp thing and not related to anorexia or some such. I will write more about all of this in my blog before I fill your comments beyond all recognition, LOL.

Ryn Tales said...

Hi Emma,

Thanks for your comments.

First of all organic foods do not have to be expensive. Many organic farms sell their products in the summer for the same prices non organic farms do if you have access to farm stands. In the winter you can get great organic foods from co-ops. Lisa Ferris describes how this works very well in her post about it here.

Secondly, do you hear the echoes across the chasms and high peaks of the blogosphere of me yoddling out – “THAT’S NOT WHAT I MEMEMEMEMEANNNNNNTTTTTT!” Regarding the cp and weight issues? Your friend in Spain sadly sounds like she has some serious issues with anorexia. I am sensitive to even slight association with being a clueless parent with some screwed up ideal weight scenario that I then mercilessly project onto my poor offspring.

But you do make a good point about knowing the difference between the effects of nutrients not getting absorbed and low weight due to cp and the usual weight issues that all of us deal with. I agree with you that knowing the difference is critical.

I think you have hit on an important point about your friend in Spain that people, especially young women, are no less vulnerable to the same bullshit about weight and being model thin that the rest of us are. (You might be thinking Dah! And I agree.)

I think one of the best ways a parent can NOT give their child issues about weight is to not always be commenting on their child’s weight. My parents were always commenting on my weight and it did give me a serious complex about it.

But I take back my note on saying people with CP are better off on the thin side because all I really know about is dealing with my own child with cp and the doctors and nutritionists who want to beef her up at all costs medical paradigm. That is totally different from an adult person with cp who can eat by mouth and make his or her own choices. My concern in writing these posts is to show parents that there is another way. I am concerned that the medical community instead of looking at nutrition differently bullies many parents into giving their kids unnecessary surgeries.

The medical paradigm takes a weight-by-numbers approach and arbitrarily applies this to all children. They will do anything like installing g-tubes and fundos and j-tubes to get them to some ideal weight for age ratio that often does not make sense for children with brain injuries. We were told Ellie had failure to thrive and that it was due to things we were doing wrong as described in my first post. We were bad parents for not subjecting her to the nissen fundoplication that would ensure she could not longer burp or vomit or even swallow well.

The difficult thing about discussing weight especially among women is that it is so loaded. I tried to make it clear in my post that this discussion was not about being thin for thinness sake. It's about giving the person proper nutrition so that their body can find it's own best weight. If that person happens to have a naturally fuller figure and their diet of whole foods permits this - that is exactly what is right for their body. If they are naturally thin then that's what's right for their body.

God forbid we give Ellie any self-esteem problems over weight on top of her other issues. The discussion I meant to begin was about nutrition, not about the horrors of societal female body image.

Lastly, I remember Lisa Ferris apologizing in a post for the direct tone of voice she used. I didn’t mind it. But now I see where being confident can sound overly authoritative. I am not a nutritionist and Dave and I eat sugar and meat and fatty foods especially this time of year. All the nutritional information in the posts are directed at parents trying to help their small children (remember Ellie is 4) who struggle with digestion, reflux, growth gains and weight gains. We have had some remarkable results by doing things differently.

But I will be the first to say that getting dogmatic about anything is the wrong way to go. So take it or leave it. And thanks again for enriching this discussion. I look forward to reading your post.

Ryn Tales said...

Comments don't allow links so here is the www. to Lisa's post about organic food co-ops.

http://twinklelittlestar.typepad.com/letter/2006/10/reader_request_.html#comments

Emma said...

Kathryn, I didn't mean or think anything bad about the above comments, I just thought it was a valid point that people need to be aware that the need for CP and low weight at times can lead to further problems. It's not an area that had caused me problems but there are other similar ones that really F***d me up as I was growing up so I'm very sensitive about them. I'm sorry if I upset or worried you.

Ryn Tales said...

Emma, No worries. I am glad you brought it up. It's a sensitive spot for me and something I am passionate about. I am just so glad Ellie is here. It really kills me when I see parents of any child not totally appreciating their kid as they are or worse doing bad things to them emotionally or otherwise. It's good that you made that comment just in case a parent reads what I wrote and thinks it is about being thin versus being healthy.

Hey- I was able to get onto your blog and read it - yeah! I like the new header if it's new, not sure.

Anonymous said...

You could be right on the protein issue Kathryn. I'll have to keep an eye on it. For the past two nights he has slept through and I don't know what I've done right for this to happen.

Slightly off subject, but regarding Ellie's seizures. On my calculations, she was two and a half before she had her first one. Is this right? And has the diet helped control them or is she on medication as well?

We were always told that if we got to 3 without seizures, we would be in the clear. Then another family's son had his first seizure at 3 and a bit and the Drs moved the goal posts to 5 years old. Its something that always sits in the back of my mind.

We were also told to keep Moo on the thinner side but like most prems, Moo is not even on the scale for his actual age so we first have to get him there. The physio has also told me that it is better if he stays shorter. My family have long limbs and apparently that isn't good for co-ordination - as if we can do anything to change it anyway.

Thanks for the post Kathryn!

Emma said...

Jacqui/Kathryn - I don't have seizures and have never had seizures (that I know of, anyway) but I don't think you can ever be "in the clear". There is something of a link between CP and epilepsy and I know several CP-ers in their twenties who developed epilepsy or other forms of seizures at that point. I actually accept that I will more than likely develop it at some point in my life being that I have worse clonus and other CP symptoms now. But it does seem to be quite common for CP symptoms to deteriorate once you hit twenty something. *sigh* I hope by the time I am very much older (or at least, by the time your kids are heading for their quarter of a century mark as rapidly as mine is approaching) we will know something more about CP in adults.

Ryn Tales said...

Hi Jacqui and Emma,

Here is Ellie's seizure history:
One at birth
One during her PDA ligation at one week old
1 during a brain surgery gone bad at 2 months or -1 month
Around this same time abnormal eeg with sharp focal waves indicating seizures.
One year later she her eeg showed up normal and 2 months before this her reflux has weaned her off the pheono barb.

Last May when Ellie was 3years old and 7 months she was diagnosed with seizures again but I am pretty sure they were happening since she was 3. They were subtle at first and got more obvious. They seem to be controlled by Depakote at the moment. When she developed symptoms we got her another eeg and this time it showed the sharp focal waves again and normal activity.

Our neurologist told us that kids with anoxic brain injuries like Ellie, if they are going to get seizures will do so between the ages of 3 and 5.

But your comments and Emma's above remind me of one of the heuristics we learned in the NICU about asking the same question of three different people and trying to piece together the truth from the 3 different answers you will get.

Linda Scotson at Advance told us the seizures were due to the increased blood flow to Ellie's brain from us building up her diaphram and circulatory system. The increased blood flow would then start to flush capillaries in her brain of toxins left over from the bleed. Each time a toxic block in the vessels are flushed a seizure might occur.

We are not sure about that but it's one more answer to the question of why.

Our neurologist told us that it could be because Ellie's brain is still growing and developing (she gained 2 centimeters in head circumference in 6 months and not from hydrocephalus). She also told us that in one year we will do another eeg and if it is "more" normal we can wean her off the meds.


Gotta go as the little miss is up from her nap...