Change in meds this month

With Kaden's numbers being a bit high last month, I asked his dietitian and metabolic doctor to go over his charts and see what can be done to try and lower his numbers. I faxed them my perfectly charted MET daily values for the past 3 months, wrote them a book on his diet and formula intake, and reminded them of his medicine doses and when he takes them. Kaden's dietitian is wonderful! She had a meeting with his doctor and got back to me within 24 hours. We are going to increase his betaine medication from 1gm to 2gm a day. This is a really easy change and I'm happy we aren't changing his diet or formula. This is just his powder medication I put in his juice everyday, super easy to add 2 scoop from 1. The only concern is this medication can cause tummy troubles if given in large amounts. So, fingers crossed Kaden can handle all his betaine in one dose. I don't know how I would add another medication dose right now. Currently, he takes 3 cups of formula, 1 cup of betaine in juice and 2 syringes of vitamins a day. Going to be hopeful that he can tolerate the change and try not to worry about it unless I see some tummy issues.

(sorry for such a bad picture, we have a stinky camera)

Bridgett

July numbers

July numbers are in and they are ok, homocystine was 59 and methionine was 107. I'm not happy with these numbers since we have been able to get Kaden's numbers in the 20's and keep them there for a few months. He has NOT been drinking his formula for the past two months so we are going to have to make some changes. I wrote Kaden's dietitian a book last night detailing his food, formula, and vitamin intake for each day. She also need some info on his weight and how varied his methionine intake is from day to day. (He is a typical toddler and has days of eating none stop and days of flat out not eating ANYTHING!)

I'm hoping to hear back from her and his doctor soon about what changes we are going to try to get some lower numbers. I do know they will probably increase his betaine medication. He had a check up in June with his specialist and he was so surprised to find Kaden still taking a pediatric dose of this medication. But, the dose was effect until now.

Kaden has been doing so well lately. He is so stinking smart and is really just a normal kid day to day. I FINALLY found a good travel scale on sale so we have been able to weigh his food while out. This has been wonderful! I no longer have to count everything he is eating or try to estimate how much of something he ate. I can just plop the food on the scale and in two seconds have an accurate weigh. YEAH!

Bridgett

June numbers=good numbers

We got Kaden's June levels back and they were great. His methionine was 40 (normal!!) and his homocystine was 33. I'm so happy that he has been having great numbers with the low amount of medication he is on. At the last doctor appointment, the Dr was so surprised to see that he was still on only 1 scoop of betaine. For his weight and age he should be on a much higher dose, but his body is processing his methionine (protein) so well he isn't needing it.

Kaden hasn't been drinking his formula like he should be. Everyday, he needs to drink 17 oz, but has only been drinking 13 oz. I was putting his betaine in his formula, but since he hasn't been drinking all of it, I'm now putting it in juice. Betaine is a medication that takes homocystine (an amino acid found in protein) and turns it into methionine (an amino acid). Homocystine can be toxic to the body if it gets to high, but methionine can be high and has no effect on the body. I'm hoping by giving the betaine separately from his formula, and making sure he gets the full dose everyday, his homocystine levels can come down even lower. Our new daily routine is 7 oz of formula in the morning, 4 oz of juice with betaine at lunch, 5 oz of formula after afternoon nap and 5 oz formula before bed. We have been doing this routine for the past week and are doing labs on Thursday. Fingers crossed for lower levels with the same dose of meds!! xxxx

Bridgett

Non-Medical Update

I'm just so proud of my boy Kaden. I wanted to post about some fun things he is doing right now for a change. He is currently 19months old and weights 24lbs. He is a very adventurous boy that loves to try anything and loves getting into mischief. I follow him around all day cleaning messes and keeping him out of things he shouldn't be into. He is also a sweet, kind, and flirty boy. He will walk up to a stranger, wave high, and ask for food, high fives, anything they have to offer. He is very smart! He can count to two, and knows a few body parts. Hair, eyes, nose, ears, hands, tummy, and mouth to list them out. He is very talkative and knows so many words I can't list or count them. He newest word is "na nu", love you. He is very polite and says thank you after you give him something and then says two and puts his other hand out.

He is a little boy that keeps me on my toes and drives me crazy some days, but can melt my heart with his smile and laugh. He is a cuddle bug at the end of the day and gives me kisses to "apologize" for all the rules he broke. I love being a mom to boys, there is nothing better!!

down and out

Been feeling a bit down and out lately. Nothing has changed recently, but I'm just feeling out of control. (FYI, I love to control all when it involves my family!!) I'm still struggling with the idea that my son has a disorder that he can't be cured of. I'm still crying over it when I'm alone and start thinking about it. I just feel so responsible, and I'm the only one dealing/treating my son.

I take on everything to control Kaden's HCU so no one else has to deal with it or even think about it, even my husband. I have all Kaden's foods in a special sections around the house with all the protein values written in charts, I order all medications, I take Kaden for all his blood draws and doctor appointments, I fill in all the daily food logs and calculate values. For me, If I need a protein value, I have to google and do a bit of research. For my husband and everyone else, I'm the walking methionine/protein value calculator and I HAVE to know off the top of my head if Kaden can eat any food that is put in front of him and how much. If I don't know, then Kaden could be missing out on a mealtime, and that makes me feel guilty. I feel like I HAVE to know how to make an alternative yet similar meal for Kaden at every mealtime. I want this for my son so he never feels left out but I'm beginning to think this is an unrealistic goal. I want to say I can cook for him everyday but I just can't. Plus, I have this whole worry of how is he going to fit in once he is eating "out of the house" on his own. When he sits down to eat with school friends, he will HAVE to eat differently. Am I setting him up for failure but protecting him and feeding him what always looks similar to what the family is eating? Should I make him eat different foods or deny him something while the rest of the family eats it? Isn't that mean?? Its that preparing him for the world? I don't know!!!......

I know these up and downs are just a part of motherhood but with Kaden I feel so much more responsible. I'm the one that is responsible for keeping his health perfect so he can go to do great things. If I slack, then in the long run, he could ultimately pay for it with his health. This is the burden I carry everyday and I know I need to let some of it go but I can't. If I let it go, who will pick it up? He is my little angel and I'm so scared of letting him down.

Bridgett

May numbers are in....

We got Kaden's levels back from 5-6-10 and his homocystine was 60. This is an OK number but a bit high for Kaden. When we got home from drawing his levels I noticed Kaden didn't get his full dose of betaine the day before! SH**! After this discovery, I knew his levels would be a bit high. Oh well, its done. His dietitian and doctor were happy with the levels so I'll try to be happy as well. Hoping for better levels next month :)

We did an extra test last month to check protein and it came back good. Now we know he is getting enough "good" protein from his diet to grow perfectly. Just what I needed to hear.

Bridgett

Finally!

Our low protein food order from Cambrooke took 3 weeks to get shipped. So, here we are a month later and finally have some food. With low protein food, it's hit or miss with the taste. It's either delicious and tastes just like the regular food or it is so nasty I wouldn't feed it to our dog. We got...

Wheat Starch-great flour replacer!! I love this stuff and well worth every penny

Tweeks-chicken flavored nuggets. These are very tasty! They are a breaded mushroom mixture. Takes a while to bake, but very convenient.

Cheese Pizza-Pretty good but don't think I would order this again due to the cost. They were $21 for 3 mini pizzas. They were really good but I could make pizza dough for a fraction of the cost and just order low protein cheese.

Hot Dogs-I'm going to be nice and say these are disgusting. (they are that bad!!) They are mashed yucca root in a casing. Enough said...

So, that is my review on our order. Not extremely satisfied with the wait or the cost of these few items, but its what I have to get use to. Cambrooke is an awesome company and does make some excellent low protein foods, you just have to find the items that work for you.

Bridgett