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.
Saturday, September 19, 2009
Sunday, September 13, 2009
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....
Thursday, September 3, 2009
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.
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.
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