Playing Miracle League baseball this past spring! Or more like sitting on the field!
Monday, August 17, 2009
Supplement Protocol
Kale did start mitorescue but reacted negatively to it so we stopped it for now. He is currently on the Biofilm protocol which includes:
EDTA
SPS 30
Diflucan and Vancomycin
He is also on a probiotic, GABA, L-carnitine and digestive enzymes.
He also gets his Methyl B12 shots every other night. I love shot night!!! He always sleeps better on shot night! He does so well with the shots! Doesn't mind them at all.
In two weeks, we will slowly start to add mitorescue back into his protocol and monitor his reactions. After (if) that is successful, we will add in his AM compound(nutritional supplement that is a prescription of different vitamins and minerals that are specifically compounded for what his body needs).
Kale just had blood work done to check functions of his liver and kidneys. Diflucan is an antibiotic taken to fight yeast overgrowth. This antibiotic is processed through the liver so when the kids are on it for long periods of time you have to check their liver functioning to make sure it is not being affected. We will get the results this week on that blood work.
He also just had a swab test done on his nose for a reoccuring staph. Unfortunately, because Kale has a deficient immune system he cannot fight off the staph he has come into contact with. It sometimes comes out in a boyle like form, but we treat it immediately with a topical antibiotic ointment and it goes away. We are swabbing his nose to see if he is the carrier so we can treat (fight) it once and for all. If he is not the carrier, then we will all be tested to see if we are.
That's the supplement update for now!!
EDTA
SPS 30
Diflucan and Vancomycin
He is also on a probiotic, GABA, L-carnitine and digestive enzymes.
He also gets his Methyl B12 shots every other night. I love shot night!!! He always sleeps better on shot night! He does so well with the shots! Doesn't mind them at all.
In two weeks, we will slowly start to add mitorescue back into his protocol and monitor his reactions. After (if) that is successful, we will add in his AM compound(nutritional supplement that is a prescription of different vitamins and minerals that are specifically compounded for what his body needs).
Kale just had blood work done to check functions of his liver and kidneys. Diflucan is an antibiotic taken to fight yeast overgrowth. This antibiotic is processed through the liver so when the kids are on it for long periods of time you have to check their liver functioning to make sure it is not being affected. We will get the results this week on that blood work.
He also just had a swab test done on his nose for a reoccuring staph. Unfortunately, because Kale has a deficient immune system he cannot fight off the staph he has come into contact with. It sometimes comes out in a boyle like form, but we treat it immediately with a topical antibiotic ointment and it goes away. We are swabbing his nose to see if he is the carrier so we can treat (fight) it once and for all. If he is not the carrier, then we will all be tested to see if we are.
That's the supplement update for now!!
SUMMER
Wow, it has been over a month since I have posted! Needless to say, it has been a busy summer!! I had two summer classes that kept me extremely busy and we did a lot of day trips when we could fit them in! We also spent a lot of time in our pool because it is Kale's absolute favorite!! He and Jaden have definitely improved on their swimming skills since July! They are both swimming underwater and that's exciting!
So, let's backtrack to July. We went to the Kalahari in the Dells over the 4th and had an amazing time! However, Kale was pretty off for several weeks after that. He had been on Vancomycin and Diflucan for 10 days and when those meds ended, he became very aggressive. He started pulling my hair and hitting himself much more than normal. He also started covering his ears which was something totally new. I called Usman's office and we recently put him back on the vanco and diflucan. He also started the new Methyl B12 shots with the increased dosage. He was also not sleeping much!
I took him to the zoo and he did great, lasted 5 hours! We have gone to the beach a couple of times and he also loves that! This was his first time swimming in a lake and let me tell you, he swims for 4 hours straight except for the 15 minute breaks!
I also took him to the Wiggles concert this past weekend. He has had some play dates with Lily and Justin this summer and that was fun for him as well.
We are definitely looking forward to school starting next week. Although I am going to miss my boys soooo much during the day, it is time for a schedule!!! The potty training is not going as fast as I had hoped and I am looking forward to some help with that too at school. He will have to get used to it eventually!!
So, all in all, we have had a lot of memorable days this summer. BUT, I have had an emotionally draining summer also. His lack of sleep is sometimes really hard to deal with. I run on empty a lot of the time and then all of a sudden it catches up to me when I least expect it. I was again hoping for some real improvements over the summer with his language but we really have had none. It is time to really focus on an AAC device for him at school and also push him to use it at home. I NEED to give him an outlet to communicate with us. His lack of communication is his biggest hurdle as well as his (and mine) biggest frustration.
My plan is to get this house really organized when they are in school, create a therapy center for him, add ABA therapy in our home for him a couple of hours a week, hang up visual schedules all over our house and really push him. It's time! I have always tried to let him be himself at home because he is pushed all day at school and then at private therapy too, but Kale needs to be pushed. He made great improvements last year during the school year and we need to build on that!
The good news is that I have recently cut down on my hours at work and I will be student teaching soon! So, I am home more with the boys at night and that will help with the scheduling!!
Will post soon.....Happy back to school everyone!
Sadie
So, let's backtrack to July. We went to the Kalahari in the Dells over the 4th and had an amazing time! However, Kale was pretty off for several weeks after that. He had been on Vancomycin and Diflucan for 10 days and when those meds ended, he became very aggressive. He started pulling my hair and hitting himself much more than normal. He also started covering his ears which was something totally new. I called Usman's office and we recently put him back on the vanco and diflucan. He also started the new Methyl B12 shots with the increased dosage. He was also not sleeping much!
I took him to the zoo and he did great, lasted 5 hours! We have gone to the beach a couple of times and he also loves that! This was his first time swimming in a lake and let me tell you, he swims for 4 hours straight except for the 15 minute breaks!
I also took him to the Wiggles concert this past weekend. He has had some play dates with Lily and Justin this summer and that was fun for him as well.
We are definitely looking forward to school starting next week. Although I am going to miss my boys soooo much during the day, it is time for a schedule!!! The potty training is not going as fast as I had hoped and I am looking forward to some help with that too at school. He will have to get used to it eventually!!
So, all in all, we have had a lot of memorable days this summer. BUT, I have had an emotionally draining summer also. His lack of sleep is sometimes really hard to deal with. I run on empty a lot of the time and then all of a sudden it catches up to me when I least expect it. I was again hoping for some real improvements over the summer with his language but we really have had none. It is time to really focus on an AAC device for him at school and also push him to use it at home. I NEED to give him an outlet to communicate with us. His lack of communication is his biggest hurdle as well as his (and mine) biggest frustration.
My plan is to get this house really organized when they are in school, create a therapy center for him, add ABA therapy in our home for him a couple of hours a week, hang up visual schedules all over our house and really push him. It's time! I have always tried to let him be himself at home because he is pushed all day at school and then at private therapy too, but Kale needs to be pushed. He made great improvements last year during the school year and we need to build on that!
The good news is that I have recently cut down on my hours at work and I will be student teaching soon! So, I am home more with the boys at night and that will help with the scheduling!!
Will post soon.....Happy back to school everyone!
Sadie
Subscribe to:
Comments (Atom)
