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