SO, life got crazy and I have not been on Kale's blog in a long time......
I am going to make an effort to get on here and update on his progress more frequently.
Well, summer is here and it has been a rough start to our summer. Rainy weather and now cooler temperatures have made it difficult to keep Kale occupied and happy when all he wants to do is swim!
Kale has been fighting a very bad yeast overload in his gut and a BAD bacteria as well. The bacteria is called Clostridia and it's evil! It makes him very aggressive at times, unhappy and very irritable. We treat the Clostridia with Vancomycin- a very potent antibiotic. He just finished a two week round of the Vanco as well as a two month dose of Diflucan for the yeast.
He has had a couple of really good days this week. He finally had some good therapy sessions with Becky this week also!
His verbalizations are increasing daily. He is presenting with echolalia right now, but I will take it. He is repeating much of what I say when I ask him to. He is using his communication device to produce 5 word sentences. This is such a wonderful step for him!
He turned 7 on June 2nd. We celebrated with a party with his friends and family and he had a great time. This birthday was terribly hard for me...mostly because I had certain expectations for Kale...expectations that I had put a timeline on. In my head, I had thought he would be verbal by the time he was 7. So, needless to say, when his birthday came around this year, and the fact that he is still, for the most part, non-verbal, it was a hard realization to face.
I allowed myself some time to get over it and we are moving ahead again at full throttle to get those words out! I know his voice is in there and I am not going to stop until I get to hear it on an everyday basis! :)
We are modifying his diet to help control the yeast and bacteria growth. Wish me luck...it's not going to be an easy change!
Thursday, July 1, 2010
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
Saturday, July 11, 2009
New supplements started
Yesterday we started mitorescue which will address his Mitochondrial issues. We have recently learned that these issues are in direct relation with his Speech Apraxia. SOOOOOO....our fingers are crossed for increased speech of course. But...if I have learned anything over the past 14 months it is that miracles do not happen with one thing or the other. It is definitely a combination of his entire biomedical protocol that is making the difference!! Today, we also started his new AM compound which is a personal made vitamin for his specific needs. In a couple of weeks, we will increase the amount of Methyl B12 in his shots and then on to chelation.
We all swam in the pool for the first time today since it was finally warm enough out! He had a great day! Mikey and I were lying on the rafts and he and Jaden were swimming around. Kale is too funny...one minute he is splashing around and the next he just pops his head under the water! I took tons of pictures so I will upload some! It was a good day for him! I can tell that he is more relaxed because I am home more and not working so much right now.
With hope for a week full of changes!! Wish me luck on potty training!!!
Sadie
We all swam in the pool for the first time today since it was finally warm enough out! He had a great day! Mikey and I were lying on the rafts and he and Jaden were swimming around. Kale is too funny...one minute he is splashing around and the next he just pops his head under the water! I took tons of pictures so I will upload some! It was a good day for him! I can tell that he is more relaxed because I am home more and not working so much right now.
With hope for a week full of changes!! Wish me luck on potty training!!!
Sadie
Wednesday, July 8, 2009
Vacation
Hi everyone,
We took the boys to the Dells over the July 4th weekend to the Kalahari resort. It was amazing!! The boys loved it there and so did Mikey and I and my parents! Kale did great the entire weekend! But hey..water is his thing! We did the best we could to keep him on his meds and on his diet, but the diet was impossible at times. The child got to eat pizza and he was in heaven!!! We saw no real behavior problems from the diet infractions so that is a good sign. That tells us that his body is healthier and able to break down those proteins better. However, it does not mean that he can just eat these foods all the time again. Afraid we are back on the diet as of today!
Also, I found out that he had a good morning at school today also! My friend (who is in his ESY class with another student) told me that she heard him say, "wanna go home!". That is hysterical!! You have to be listening closely to Kale at all times, because there are times that words will just pop out!
He wanted a popcicle again last night and I again asked him what color he wanted and he responded with, "Blue" again so that is great! Sometimes Kale will say a word but you never hear it again. Glad to see that "Blue" seems to be sticking.
He had therapy today. He did great for OT and Ok for Becky with Speech. He was tired. It was a long day for him today! Summer school, then target, then two hours of therapy in Mokena! So, his last day of ESY is tomorrow. I am looking forward to some sleepin in for the remainder of the summer! I think he is as well!!!
Well, back to the norm. The vacation was worth every penny and it was so important for us to take since Mikey will be working so much from now until December!
Onto the potty training.....my next project!! Wish me luck!
Love,
Me
We took the boys to the Dells over the July 4th weekend to the Kalahari resort. It was amazing!! The boys loved it there and so did Mikey and I and my parents! Kale did great the entire weekend! But hey..water is his thing! We did the best we could to keep him on his meds and on his diet, but the diet was impossible at times. The child got to eat pizza and he was in heaven!!! We saw no real behavior problems from the diet infractions so that is a good sign. That tells us that his body is healthier and able to break down those proteins better. However, it does not mean that he can just eat these foods all the time again. Afraid we are back on the diet as of today!
Also, I found out that he had a good morning at school today also! My friend (who is in his ESY class with another student) told me that she heard him say, "wanna go home!". That is hysterical!! You have to be listening closely to Kale at all times, because there are times that words will just pop out!
He wanted a popcicle again last night and I again asked him what color he wanted and he responded with, "Blue" again so that is great! Sometimes Kale will say a word but you never hear it again. Glad to see that "Blue" seems to be sticking.
He had therapy today. He did great for OT and Ok for Becky with Speech. He was tired. It was a long day for him today! Summer school, then target, then two hours of therapy in Mokena! So, his last day of ESY is tomorrow. I am looking forward to some sleepin in for the remainder of the summer! I think he is as well!!!
Well, back to the norm. The vacation was worth every penny and it was so important for us to take since Mikey will be working so much from now until December!
Onto the potty training.....my next project!! Wish me luck!
Love,
Me
Thursday, July 2, 2009
Latest test results...
Kale's latest test results tell us the following:
He has no more yeast overload, but this can come back at any time. He is on a yeast free diet so this will help limit the overload!
He is mercury, lead, aluminum, antimony and cadmium toxic. We will be doing a protocol soon to rid his body of these toxic elements.
His vitamin and mineral levels are all great right now! After 14 months of supplements, we have made great improvements with his zinc/copper ratio, iron levels, vitamins A and D, etc.
His B12 levels are still low, as well as his carnitine and folic acid levels. We will continue with Methyl B12 injections every other day.
Kale also has mitochondrial issues which are attributed to his speech Apraxia. We will treat this with a supplement called mito rescue. It was devised by Dr. Usman. We will start this next week when we get back from the Dells.
So, this week he is on the Vancomycin. Next week we will start the mito rescue and see how it goes. Next month, we will have new ventures.
With hope,
Sadie
He has no more yeast overload, but this can come back at any time. He is on a yeast free diet so this will help limit the overload!
He is mercury, lead, aluminum, antimony and cadmium toxic. We will be doing a protocol soon to rid his body of these toxic elements.
His vitamin and mineral levels are all great right now! After 14 months of supplements, we have made great improvements with his zinc/copper ratio, iron levels, vitamins A and D, etc.
His B12 levels are still low, as well as his carnitine and folic acid levels. We will continue with Methyl B12 injections every other day.
Kale also has mitochondrial issues which are attributed to his speech Apraxia. We will treat this with a supplement called mito rescue. It was devised by Dr. Usman. We will start this next week when we get back from the Dells.
So, this week he is on the Vancomycin. Next week we will start the mito rescue and see how it goes. Next month, we will have new ventures.
With hope,
Sadie
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