Thursday, August 23, 2012

Dear Son Blenderized Diet & Update

It's been a while since I've given an update on Dear Son. I know many of you have asked for more detail on his blenderized diet.  Overall, he's done amazingly well. Recently, he went to the neurologist and he lost 10.5 pounds in the last three months. He has now lost 15 pounds since December 20th when he started his real food diet. I am really happy about this because he's eating the same number of calories as he did when he was on the formula (which the second ingedient is corn syrup and this is one of the better formulas that the nutritionists at the Big City Children's Hospital recommended, lol.).

 
 
Since he only gets around 1300 calories a day, I didn't feel good about cutting his calories back to lose weight. I am thrilled though, that even though he can't move hardly at all, that he was able to lose this weight.

So what is he eating? His Mama's cooking!  Seriously, there is a whole lot of cooking going on here. I cook on average five items per day.  I make everything from scratch and use mostly fresh fruits and vegetables. Dear Son gets 11 servings of fruits and vegetables per day! 

I created my own diet plan for him and breakfast consists of : one fruit, one probiotic, one carb and an omega 3. A sample breakfast is 1/2 cup of kefir, 1/2 cup of berries or a piece of fruit, 1/2 cup organic brown rice cooked (think of rice cereal; I like Lundberg Brown Basmati Rice) or 1/2 cup oats (soaked and/or cooked) and 2 tbsp of organic ground flaxseed or some other omega 3 (often I'll use different types of nuts/seeds).  Today's breakfast was 1/2 cup Lifeway Cherry Kefir, one peach, 1/2 cup oats and 2 tbsp of organic ground flaxseed. I add 1.5 cups of water and place in the Blendtec. I hit the smoothie button once and then Level 10 for 35 seconds. I pour it in a bowl and then give him 4 syringes (equals one cup) every 30 minutes. After being on the diet for a while, I now will give him 8 syringes for the first serving of breakfast and then wait 40 minutes until the next cup. Then I give 4 syringes (1 cup) and wait another 30 minutes.

Each meal consists of 1.5 cups of water. If I am giving him foods that have a lot of water content, I'll reduce the water a bit to a little over a cup so that I can keep the total volume under 4 cups.

Lunch and dinner are the same. I do all of my cooking early in the day and whatever we have for lunch is what he'll have for dinner. After all, it's going right into his feeding tube and nothing via his mouth. 

Lunch is 4 cups (fill it up to the 4 cup mark on the Blendtec) of leafy greens (I rotate all of my greens according to a schedule.), 1 fruit, 1 cup of cooked vegetables (1/2 cup is one serving), 2 oz of protein, 1 carb (usually is one slice of my homemade bread which his 3.1 grams of fiber) and 100 calories of fat (most often it's a tablespoon of butter).

This meal consists of 4 cups organic spinach, organic orange, organic sirloin steak, asparagus, my homemade whole wheat bread and butter. Off into the Blendtec it goes!
 
 
 
 
 
To give you another example, today's lunch was 4 cups of leafy green lettuce, 1 cup whole strawberries, 1 cup snow peas, 2 oz. of organic chicken (seasoned with sea salt and organic black pepper), one slice of whole wheat home made bread, one tbsp of sweet cream butter. I add 1.5 cups of water and blend it. I hit the smoothie button and then Level 10 for 35 seconds. He gets the same formula, so to speak for dinner. While I don't count calories any more, I do measure everything.


My protein sources for him include: Sommers Organic Skinless Boneless Chicken Breast, Sommers Organic Sirloin Steak, Sommers Organic Chopped Sirloin 97/3, Vital Farms Organic Eggs (see photo above), Albacore Tuna, Trader Joe's Ahi Tuna and Eden Organic Black Beans to name a few. I make all my own bread for him. I rotate the greens and try to use as many organic fruits and vegetables as I can afford.  I also give him 1/4 cup of kefir  at midnight with his meds. For omega 3's, I vary the nuts/seeds and use other food sources for omega 3's.

In this photo, Dear Son is having romaine lettuce, carrots, an organic chopped sirloin hamburger (2 oz.) (made with organic onions, sea salt and organic black pepper), on his Mama's home made poppy seed bun (he gets 1/2 of one) and an herb butter mix (downsized for us) spread on the bun.  The fruit was pineapple.

In this photo, here is a smoothie I made for him.  Back in April, before I converted his school lunch, he'd get 1 can of formula at school and then I'd make a smoothie for the remaining calories. In this photo, he has organic baby spinach, organic banana and organic strawberries for lunch.  As of June, all of his meals are now converted to real food. 
 

Things I won't do are the following: no fake foods, no junk foods, no foods with sugar (sugar is an anti-nutrient so I try to stay away from that), no protein powders, no soy, no non-organic meats/poultry and no non-organic milk. I rarely give him any milk since I give him kefir although he does get some dairy.  I also watch toxins for him.  I stay away from any canned foods (contains BPA), never use a microwave (gave that up 2 years ago plus it denatures the food), don't use teflon, no aluminum cookware and try to limit toxins of any kinds. I also use natural or plant based cleaning products in our home. I transitioned to natural cleaning products a few years back but I wanted to mention it here. 

There were a few books that were the foundation for the blenderized diet.  The first is, "Never Be Sick Again". I think this was a great book because it helps you undertand the role of both nutrition and toxins in terms of disease. Second, I liked the book, Super Foods RX: 14 Foods That Will Change Your Life. While certainly, we are inundated with tons of books and internet links to "super foods', this book made it easy for me and provided a nice foundation for super foods. And finally, Nourishing Traditions by Sally Fallon. I won't go into more detail on these books since this post is long enough.

Overall, it's been a great transition for Dear Son.  He seems happier, more alert and cognitively, he is much improved. He's lost a lot of weight and this is actually the only time he's lost weight other than when he's been sick. His acne improved and his face looks 85% better and he's no longer on an antibiotic for acne and no longer uses a prescription acne cream. He no longer  has dandruff. He used to have dandruff so bad I kept his hair short. Now it doesn't matter. The new blenderized diet seems to make him feel full-he no longer wakes up early in the morning wanting me to start his food. He sleeps through the night more and seems overall a lot better. His neurologist says it's the , "best he's seen him in years" and his other docs are amazed that he's so much more alert now.

While it's been great for Dear Son, it's also been hard. In the beginning, I counted every calorie online and this was very time consuming, along with cooking all his food from scratch plus working.Meals take a while because he only gets 1 cup every 30 minutes so a meal takes two hours to administer on average. I no longer count calories for him but I do measure.

Some things did not go very well.  Initially, I tried to put the food through the feeding bag. I learned later that blenderized diets never go through the bags because the feeding pumps aren't strong enough to push the food through.  Also, we had to get a larger button (this is the button that goes in his stomach and which is where I feed him).  The minimum size is a 14 FR for tube feedings and we only had a 12 French which made it much harder.  In the beginning, I didn't know what setting to use for the blender-should I try the juice button, smoothe button, soup button or what?  It was a bit overwhelming and since blenderized diets aren't promoted, there isn't a lot out there. It was a lot of trial and error but now it easy to do.Because I created a formula, I can create a meal for around 400 calories no matter where I am at and I like that.

On the down side, there were a few disasters.  First, at the beginning of May, I converted his breakfast over from formula to the blenderized diet. I added kefir which contains probiotics. Well, he got the flu after that. I am assuming that his body wasn't strong enough yet to battle the bateria in the kefir. The flu threw me for a loop. On the one hand, I was so depressed he got the flu and then I thought that was pretty unrealistic. The good news is that while he got the flu, he only threw up twice AND I was able to manage it at home and he didn't have to be admitted to the hospital. This was the first time in his life that he had the flu and it didn't require a hospital admission. Amazing. The second flop came when I tried to add a multi-vitamin to his regime. I researched these multi-vitamins and thought I found a good one. I emailed the vitamin manufacturer to ask some questions since I would need to crush it to administer it and they had a formula that should not be crushed. Anyway, they directed me to the multi that I could crush. I gave him one dose and after two days, I added the second dose (the normal dose was two vitamins/day).  Well, Dear Son began having some severe choking episodes after that and nearly choked to death.  I ended up stopping the vitamins. I am not sure what caused the severe choking but my guess is that the green tea extract in the vitamins caused seizures and he wasn't able to process the secretions and he choked. I had to stop giving him tea in February because the tea seemed to increase seizures for him (he was born without any gaba due to his gene mutation) and my best guess is that the green tea extract was too much of a stimulant for him. At this point, I have been reluctant to add a multi-vitamin after that disaster.

Aside from the blenderized diet, he overall is doing well except for some severe choking. Dear Son's throat muscles have deteriorated with is progressive disease and he is unable to process his own secretions. Normal people swallow their own saliva throughout the day but he can't swallow (which is why he uses a feeding tube) so he is choking on his own saliva.  We have tried the normal treatments of Robinul and even botox injections in 2008 for him but they both failed. We had been using a Scopolamine patch for many years up until the manufacturing shortage. Once we stopped the patch, we learned that it was actually causing seizures for Dear Son. When we tried the patch after the manufacturing issue was resolved, we could tell that it was causing seizures for him so now we can't use that.  We met with an ENT to discuss the possibility of the removal of his submandibular glands and one of his parotid glands. I thought perhaps since Dear Son was healthy, this might be a good time to consider this surgery.  The idea is that if those salivary glands were removed, the problem would be lessened/solved and then Dear Son wouldn't choke if less saliva was created. Well, it wasn't that easy. We met with the surgeon and even if he did the surgery, there was no guarantee it would work. In some cases, there is a lot of improvement, in others a 50% improvement and in others, no improvement at all. Dear Son is a high surgical risk for respiratory depression (his lung collapes in May of 2009 during his surgery) and a huge surgical risk for aspiration (his lung collapsed when they didn't protect the airway with a breathing tube so he choked on his saliva and it pooled causing a mucous plug and his lung collapsed). The surgeon suggested we meet with anesthesia to determine the risks.  As it turned out, the risk proved too great for us to do any surgery. Not only would they have difficulty getting him intubated (putting the breathing tube in his for surgery) but there was no guarantee they could extubate him (meaning remove the breathing tube after surgery and having Dear Son breate on his own). There was no guarantee he wouldn't be on a ventilator and no guarantee they could remove it. In the end, the risk was just too high. So now we are left with him coughing and choking a lot. Some days, it's very bad and on those days, we put the patch on for a few hours until the siezures start up and then we have to remove it. The whole surgery discussion took us a while and it seemed like we had nothing but doctor visits for a few weeks.

Other than that, things are o.k. I hesitated to give an update until I had news to share. Some days, it's depressing when he's choking knowing there isn't anything more I can do. I know at some point, his time will come but until then, I'll do everything I can to keep him as healthy as possible. September will be two years since Dear Son's been hospitalized for pneumonia so that's progress. I started him on Now Foods Organic Virgin Coconut Oil and that has worked well. The blenderized diet has worked well and hopefully I can continue to build his immune system.  In the end, it's all a lot of work but I can honestly say that I work hard every day to keep him as healthy as he can be. For a man like Dear Son, it's not easy trying to keep him healthy. His body just doesn't work like a normal person's. I am thrilled though for all of the progess he's made. We saw the neurologist two weeks ago and he was surprised at how alert he was. We saw the GI last week and he couldn't get over how well Dear Son was doing. He told me three times not to change anything and that Dear Son looks great. He nixed doing any kind of testing on Dear Son since the risk of performing a test on his was too high.

So, that's where we are at. Dear Son is doing really well overall but the choking remains a problem and there isn't much we can do about it.

6 comments:

Michelle said...

It's so amazing to read the work and devotion that you put in for your son. Truly inspiring. As a therapist that works in early intervention I do see parents like this, but it doesn't seem to be the majority. I'm not surprised all of the major changes for the better than real food has made for him. Can you imagine if everyone ate as well as he did!? The amount of money that would be saved in healthcare would be incredible. I feel the same way about food and products that you do. Food quality is extremely important to me and I do organics as much as possible. It's scary the amount of chemicals and artificial ingredients are in most foods out there. I highly recommend the book The End of Food.

Dream Mom said...

Thanks, Michelle. Early intervention might be a little hard to see a lot...I remember when Dear Son was 3 and starting school...at that time, with all of his disabilities, everything was a bit overwhelming. Maybe it's different today with so much access to information; I don't know. I've been doing this twenty years now so things aren't as hard as when he was younger-I've accepted his disabilities by now.

As for the blenderized diet, it's a lot of work, at least initially. Now, it does take a fair amount of time for cooking and such, but I can put it together fairly quickly one it's all cooked.

It is a shame though that nutritionists don't promote the blenderized diets for these kids. I mean, I met with different nutritionists at major children's hospitals over the years and in the six years Dear Son was on the g tube feeds, no one ever even mentioned it to me. I started googling it on my own and there is really very little information in terms of how to actually do it (meaning getting the food into him via the extension tubes). I'd like to believe more parents would do this is they were offered the option. I think it would even be a good alternative if they ate what the family ate, versus the formula junk. I found a nutritionist that promotes and recommends blenderized diets. I met with her a few months into Dear Son's transition to the blenderized diet to get some mechanical questions answered. Take care. Thanks for the book recommendation.

Anonymous said...

What a lucky young man to have someone providing the best possible care for him. I very much admire your ceaseless dedication to him.

Laura

Susan said...

You are a wonderful mother!

cheddar said...

The food looks so good -- are you getting healthier, too?

Dream Mom said...

Thanks everyone.

Cheddar-Yes, the food is very good (both quality and taste). I've always eaten pretty healthy (lots of organic, little to no processed foods and have been cooking from scratch for 10 years or so) which is why I wanted to switch my son over to a blenderized diet made from real food. I would say I eat healthy, but not as perfect as Dear Son. He eats 11 servings of F & V and I probably get 7-10/day. I don't get much time for myself to exercise so that is an area where I could use some improvement. Even something as simple as taking him for a walk is tougher now-he's a little under 200 pounds, the chair is another 100 or so and it's hard to push. I could also use more sleep to be healthier. Tomorrow night will be the first full night's sleep for me in over 3.5 weeks when his Dad will take him for a day or so. Thanks for asking.

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