holiday cookies/chocolate

I've been wanting to order low protein chocolate so I can make K some treats but Basil isn't on board. All low protein foods are expensive and if you don't like it, you have to just toss it. With K only being 1 I understand Basil's opinion but being a mom, I want my baby to have treats during the holidays. Well, I lucked out at K's metabolic clinic yesterday. His dietician gave me an advent calendar of low protein chocolates and they are delicious!! So, I'm going to melt down some of the pieces and dip graham crackers. I'm so happy! We are going to a cookie exchange in a few days and my baby won't have to watch everyone eat delicious treats while he has to eat fruit. He will have some yummy chocolate crackers just for him and if anyone is lucky enough, he might share! :)

Thanksgiving Dinner-low protein style

I'm hosting Thanksgiving this year and with 7 days remaining until t-day I'm starting to think, "what is K going to eat?" I want him to feel like he is a part of every holiday and that he isn't getting a plate of some random-ness while everyone else is eating something entirely different.
Our Menu is..

• Turkey (none for K)
• Roasted potatoes
• Sweet potato casserole (none for K)
• Pan seared green beans
• Cranberry sauce
• Rolls (none for K)
• Pumpkin pie (none for K)

So, I think if I make him some bread and a dessert he should be able to have a nice thanksgiving meal just like the other family members. I have a great bread recipe from my Apples to Zuchinni cook book so that is taken care of. I also have a "ginger bread" recipe that would be perfect for a holiday dessert so I'll give that a try. If they turn out good, I'll have Christmas dessert already figured out! :) I'll let you know how the meal turns out and if I get a thumbs up from my baby K.

Happy 1st Birthday baby K!!

I just have to post some pictures from Kaden's first birthday. It was definitely a really fun, memorable party.

Halloween!

Kaden had a great halloween. Last year he was only 7 days old so this year was really like his first year! He went trick-or-treating with his brother, maw maw and myself. He gots lots of treats and, of course, lots of compliments on how adorable he was!! :) My dad and sister have labeled him as becoming a doctor when he gets older, soooo, naturally, he was a doctor for halloween.

Finally..some good numbers!!!

We got Kaden's lab back from early October and his homocystine is 18!! Whooohoooo! These are the lowest numbers yet! His methionine was a bit high, but his dietitian told us its a side effect of the cystadane and its nothing to worry about (in the 200's). So, three months later, we are finally in a good spot, for now. I never seem to get too excited since I never know what next month will hold.

BTW...Kaden has been so hard to feed lately!! This kid wants to live off fries and crackers! He will just scream in his chair until I give in, and give him what he wants. I don't know how a kid that can pretty much only eat fruits and veggies can go all day without one??! But he has managed to do it. I did get him to eat some tomatoes and zucchini tonight after adding salt and pepper to both and salad dressing to the tomatoes. I also made some low protein tortillas last night that he seems to like. They are really good! They look a bit white and transparent at first but once you taste them, they are yummy. I might try to bake some this weekend with some seasonings and make some chips! I know, I know, just what he DOESN'T need, anther chip to obsess over. They are so low, three equals 1 pt, so I don't even count them since he can barely eat one.
sigh....just trying to hang in there....

Kaden's First Birthday menu...

Kaden's first birthday is this Saturday (5 days away) and I have a big family luau planned. I can't believe its already been one year since I had him, it really flew by. As for the menu I have planned, I'm catering in Panda Express (chinese) since I have 35 people coming and I don't want to cook. The local hawaiian restaurant is not good so I figured chinese food is close enough :) Kaden should be able to eat a small portion of the fried rice and I'm going to make fruit and marshmallow kabobs (thanks for the idea Tammy) as well for him. As for his cake, I ordered a special mix online that is low in MET from myspecialdiet.com. Frosting is easy since he can eat the store bought "ready to use" stuff. I'm a bit surprised and confused, like always, with what is actually low in MET. As for the frostings, cream cheese flavor is the lowest! Um yeah, wouldn't it be high, its CHEESE! Anyway.....that is our frosting of choice since its MET free. Will post pics after the big event!!

Picky Eater! AGAIN!

Soooo, I jinxed myself by saying K is a great eater in the last post! I'm eating my words now. It has, yet again, been so hard to feed him lately. All he wants to eat are crackers and gerber "cheetos". He isn't eating baby food that good anymore but when I give his real food he acts like he doesn't know what to do with it and spits it out. I think I will have to step up my cooking skills and see if I can get him to start eating his veggies!! I have some squashes I got on sale that I'm going to play around with. Going to steam one and roast the other. Not sure if I should puree it or just cube it up for him. I"ll probably do both just to see what I can get him to eat! sigh.....

Cystadane update...

So far the addition of Cystadane to Kaden's treatment is going well. It's a powder substance that I add to his formula bottles three times a day. Its only a 1/8 teaspoon dose for the entire day so it doesn't seem to change the flavor of the "milk", he is still being a good boy and drinking all his bottles.

He really is getting adventurous with his diet and I'm excited about that. Last night for dinner he ate tomatoes and cucumbers from my subway sandwich. So cute! He is now able to drink out of a juice box which is the new fun thing! Today at MC Donald's he LOVED having sips from his juice box between fries! (I know he is to young for fries, but I have mother's guilt and give in). I also made some low protein bread last weekend that he likes toasted with jellies. I make cinnamon croutons with the last few stale slices last night and he gobbled it up for breakfast. (I could let the bread go to waste, so expensive and a bit of a pain to make).

He has been such a good eater lately and its been so nice!! I hear the boo boos now, gotta go!

Another set of Bad Numbers!!

We just got back our latest levels and they are still high. Homocystine 91, Met 50. So, we are starting Cystadane (aka:Betaine). We are starting with a low dose 500mg for a few days to make sure it doesn't give him a tummy ache and then go up to one full scoop, 1000mg which is the full therapeutic dose. We also changed his formula cocktail from 65gm hominex to 75gm with 8gm of similac for 16oz total. We also increased hominex to 6gm per ounce (from 5gm) for extra formula at night. We will redraw blood in two weeks. Doctor not sure why his MET is normal but the homocystine is still high, MET turns into homocystine.

I'm a bit nervous about cystadane, I don't know why. There are no side effects besides tummy aches and nausea but I hate giving my kids any kind of drug I'm not familiar with. Most people with HCU do end up on cystadane at some point, haven't meet someone not on it, but usually not until 2-3yrs of age. Kaden is only 10months and we weren't able to control his levels with food and formula alone, not good in my eyes.

Overwhelmed with meal time....

Meal time for Kaden has turned into frustration fits. Most meals this week are ending with bowls still fill, Kaden still hungry, and one of us crying since we can't figure out what the other wants. I think he is getting tired of baby food, but he isn't wanting to eat the fresh, steamed veggies or fresh fruits yet. I remember my first son doing this too, but it was much easier to deal with. I could just keep giving him stuff until I found something he wanted. Well, with Kaden its a little different. Most foods have to be cooked, and weighed before eating and if its something new I need to look up MET count to see if is OK to eat and what portion he can have. By the time I have done this, he is crying and mad, and just won't eat! Of course he will always eat Gerber little crunchies "Cheetos" but I don't want him living off chips even if they are whole grain. He is definitely getting tired of the low protein "cheerios" and freeze dried apples. They are so low in MET I don't even count them so I give them to him for snack a lot! So, I placed an order for some more metabolic foods. I ordered a cheese powder and chicken powder that I'm planning on adding to rice, pasta, and veggies for some extra flavor. I can also make mac and cheese with the cheese powder!! Very excited about that!! I also am going to attempt my first loaf of bread from the book, Apples to Zucchini. I'll let you know how it turns out.....very nervous....

Kaden's food journal

I have created a food journal for Kaden that I'm really proud of ! The doctor and dieticians are even impressed with how organized it is. I thought I would share how I'm tracking Kaden's methionine intake everyday, as well as every month.

To get started all I bought was a three ring binder, pencil pouch, and a folder with pockets that will fit in the notebook. This all cost about $3 at walmart! I used microsoft word to create the tables for my "reference" pages and the daily/monthly logs. I like the daily log so I can see exactly what he has eaten all day and the monthly log to get an overview of his intake that month and how it may have affected his homocystine number. Also, when my husband comes home he doesn't have to ask, "how many points does he have left", "did he take his vitamins", he can just look in the book and pick up where I left off. At the bottom of the daily log I made a box for vitamins and formula since these need to be tracked daily as well. The vitamin box I just check when he has taken them, and the formula box I check when he has drank all of the mandatory formula. The dash and second number in the formula box is any extra hominex (medical formula) he has drank that day in ounces (the "H" is for hominex).




The first picture is his daily chart. I made three columns so I can track what the food is, how much he ate (I prefer to use a gram scale to weigh portions) and how many MET was in the serving. There are also rows for subtotals after each meal and a total for the end of the day. You can also see the formula and vitamin box I was talking about earlier. The second picture are common foods my son eats and the MET per 1gm of that food. The third picture is the same type of page as the second, but is MET count of baby foods. I also have one more page that is just the same that has dairy, grains, frozen foods, etc that my son likes. I like these kinds of reference pages. After totaling how many grams he ate of a certain food, I just multiple it by the MET/1 GM number off one of the three pages that are right next to the daily sheet to get the total MET for that portion that he ate.


This last picture is Kaden's MET intake for the month sheet. I just made a table so at a glance I can see what his MET intake was for each day of the month. It's to hard to flip though the pages when the dietician asks you questions about MET intake. "Was MET intake high, low, is he satisfied with the MET allotted", etc. It also lets me know how I did for the month at calculating his meals and did I keep them in range. Did I go over alot, was I too low, do I need to alter some portions.


So, this is Kaden's food bible. I take it with me on vacation, to all the doctor appointments and I really like the organization it gives me. I have everything on hand at a glance, it easy to access, and so far it has been great.

August Level Update

So, we got Kaden's august blood draw levels and they were not good. Last month they were 111 and now 117, even higher (safe is under 60). I spoke with the doctor and we have changed his formula "cocktail" by decreasing similac and increasing Hominex. Hopefully this will bring his numbers back down to stable like they were in the spring. If not, we will have to start giving him Betaine, an amino acid that gets rid of homocystine in the blood. Many HCU patients are on Betaine and it is a naturally occuring product but K's doctor is wanting to hold off on if if we can. So, back to the drawing board for treatment......

Welcome!!

I'm starting this blog to help me and other mom's with children who have HCU (homocystinuria). My son Kaden got diagnosed after two abnormal newborn screening tests at 8 weeks old. After a few months full of fear and hopelessness I can now say I KNOW my son will be fine. I have jumped into this feet first and am doing everything I can to track his diet and follow his treatment plan. Since he is just now getting bored with baby food (he will be 10 months in 4 days) the real fun of being a crafty cook is going to begin! I'm fortune to be a stay at home mom so I can devote a lot of time to researching foods methionine/protein values and work on my cooking skills. I have found a few moms online who have helped me tremendously with low protein recipes. Unfortunately, most of there kids are older or they are overseas so I can't get the same ingredients or cook those recipes for Kaden, just yet. So far Kaden is a good eater but he is only 10 months old so certain textures he is just not ready for even with 7 teeth. So, with that said, this is Kaden's journey with HCU!

Total Homocystine Values and MET values

We started doing monthly blood draws when Kaden was about 3 months old. He has been on hominex-1 formula since 8 weeks old as well as vitamin B6 and a compound of folic acid and B12. The saftey zone is under 60 for total homocystine and under 1,000 for MET.

These have been his values:
July 22,2009
111.7 Homocystine
257 MET

June 8, 2009
55.9 H
68.8 MET

May 3, 2009
32 H
11 MET

As you can see we were doing great until July! That month, I stopped breastfeeding and introduced similac. We also increased his protein intake since his numbers had been so good. We added more hominex to his diet, and deceased his similac and protein intake to try to get his numbers back down. We will be getting August values soon, so fingers crossed they are good!!