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
Saturday, July 11, 2009
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
Wednesday, July 1, 2009
Another question...
Kale just pulled me to the side door which means he wants a popcicle from the freezer in the garage. When we got out there, I asked him, "what color do you want?" He responded with, "Blue!" Ok, that is the third question he has anwered that I have asked him today with clear pronounced words!
Love it!
Sadie
Love it!
Sadie
Dr. Usman visit, 6/29/09 New Protocol
Ok, So as of Monday, June 29th, 2009, we are on to a new protocol to treat Kale and his medical issues and we are excited.
Kale has what's called Clostridia. We are treating this with Vancmycin, an antibiotic that he will take for 10 days to knock out the Clostridia in his gastrointestinal tract.
As of this morning, Wed., July 1st, Kale had had 4 doses of the Vanco. I work him up for summer school and I asked him, "Kale, do you want to go to school?" And my non-verbal son replied, "NO, Mama!"
I screamed for Mikey, and before I could even say, "Mikey, did you hear him?" Mikey said," I heard it!!!!" We were floored.
So, later in the afternoon Kale was eating an apple and I asked him what he was eating and he said, "Apple".
Seriously, two answers to two questions in one day!!! SO, I say, bring on the vancomycin! YIPPEE!!!
We will contine this for 8 more days, and see what happens. He has BIG changes coming to his protocol and I will continue to post our progress..
With Hope,
Sadie
Kale has what's called Clostridia. We are treating this with Vancmycin, an antibiotic that he will take for 10 days to knock out the Clostridia in his gastrointestinal tract.
As of this morning, Wed., July 1st, Kale had had 4 doses of the Vanco. I work him up for summer school and I asked him, "Kale, do you want to go to school?" And my non-verbal son replied, "NO, Mama!"
I screamed for Mikey, and before I could even say, "Mikey, did you hear him?" Mikey said," I heard it!!!!" We were floored.
So, later in the afternoon Kale was eating an apple and I asked him what he was eating and he said, "Apple".
Seriously, two answers to two questions in one day!!! SO, I say, bring on the vancomycin! YIPPEE!!!
We will contine this for 8 more days, and see what happens. He has BIG changes coming to his protocol and I will continue to post our progress..
With Hope,
Sadie
Kale's journey out of Autism
Hi everyone!!! I am excited to do this blog on Kale's recovery out of Autism! We have come a long, long way since diagnosis on January 10th, 2006. I cannot say that was the day that shattered my world, but more of a reaffirmation of what I already knew! The day that shattered my world happened about 5 months before that. Mikey was working midnights and I was forever up at night because I had twins that liked to stay up late like their mommy! I was still working nights at the restaurant and could not turn off that "restaurant" clock on the nights I was home.
As Kale started showing signs of delayed development, I began to ask my mom, my aunts, "do you think Kale is delayed, or is Jaden just really smart?" We went with the answer, "Jaden is just really smart" for two reasons, because he really is and because we didn't want to go there with the other option! Anyways, one late night I was on the computer researching developmental delay and Autism popped up. I clicked on it and began reading. The article and symptoms described Kale to a tee! Speech delay, sensory issues, developmental issues, feeding aversions, etc. Right then, I knew it! It was as if my grama was speaking to me from the heavens and said, Get with it Sadie, it is Autism! You need to realize it so you can fight!
I screamed at the top of my lungs, "NOT my baby!!!!!!!!!!!!!!" "WHY?" "WHY HIM?" "WHY ME?" "WHY US?" Oh, I was hysterical! I called Mikey at work and screamed into the phone, "It's Autism!!! He has Autism!!!"
After that initial night, I began my fight. I researched and I researched! I was online entering words into google left and right, reading everything that I could. Kale began therapy with Early Intervention and we were off...Off on the road to recovery. There was only one problem...Kale still was not speaking! Not any words...what the hell I thought? This Speech therapy was supposed to be working! He was then officialy diagnosed at the age of 2 1/2 with Autism and Speech Apraxia. I will tell you people, the apraxia is worse than his Autism! I can deal with the behaviors, the food aversions, who cares if he never eats anything that is soft or smooth in texture! Not telling me that he loves me, now THAT is a problem!!! So, we added more therapy. Kale has been with Becky his speech path since the beginning! He loves her and vice versa. She has put in endless hours trying to get him on the right path away from speech apraxia! He still spends one hour a week with her now.
Kale entered early childhood and had a wonderful teacher and speech path. They also worked really hard to get him to talk. They got him to use a communication device that allowed him to share his feelings and to make known his wants and needs.
Over the Christmas season of 2007, I had a bad, bad time. April, 2008 hit and I said, THAT's IT!! We needed to do more for him......therapy alone wasn't doing it! He was still nonverbal and it was driving me crazy! I was not getting him better. I attended conferences, I read books and articles, I talked to other parents, I even started a support group.......why couldn't I get him better?
So, that April, I called the Pfeiffer Treatment Center. There was a DR. Allen Lewis there that had a son with Autism of his own and he specialized in biomedically treating kids on the Autism Spectrum. He was who I needed to see!! So, we did. We did a WHOLE bunch of initial tests and found out a lot about Kale's body and what was good and what was wrong.
(I will post test results at a later date)
Anyways, we then removed Gluten from his diet and wow! He started being more "with us" than "with Autism". It was a remarkable change! He was also on vitamins and nutrients that were specifically designated for what is body needed. He was more alert and aware of the environment around him. He realized that playing with Jaden could be fun for him. The interaction between them increased and was an unbelievable joy to watch. Jaden had been stripped of that bond that twins are supposed to have, but it was slowly emerging for him and Jaden was so happy!!!
We started Methyl B2 injections (yes, shots) and this was the miracle I was hoping would bring the words out for Kale. They are subcutaneous needles and they do not hurt! He gets a shot every other night and I was praying.....please let this work! Well, they did work but not to the extent I was hoping....miraculous! Again, he had more awareness, more attention, slept better at night (which believe me, was a miracle in itself!!! ), but no increase in speech. So, I hit a deep depression in September of 2008 that lasted till right before December. Thank God for Christmas, it pulled me back to reality.
So, April 2009 was the one year marker of doing Biomedical treatments with Kale and they have all made a difference. He is a different kid...he was successfuly included for half of his day during Kindergarten and was with typical learning kids as well as his Autism best friends!
This past year, I have developed three VERY special relationships with whom I call, "my Autism friends". I have leaned on these three girls so much over the past year and vise versa. Without them, I could not get through these days. I think of the relationships our children have come to develop and I am grateful. For they will never, ever be alone...Kale, Justin, Lily and Brody will always have one another and that is more than I could ask for right now. Also, their typical siblings will have one another to talk to about what it's like to have a sibling with Autism, and Jaden can get answers to his questions like, "mommy, why couldn't we just leave Autism at the store? Why does brother have to have this anyways? Why can't he talk to me like my friends can?" Heartbreaking I know, but that is my sons reality.
As we enter this second year of Biomedical treatments and never ending journey of recovering Kale from Autism, I am thankful for my husband! My Mikey is so supportive and loving and forgiving and understanding of Autism. He has a special bond with Kale that I cannot put into words. He lets me scream and cry at him and do the research on what we need to do...and he never tells me NO! Never!!! He is on board and for that I am grateful!
I am also grateful for my parents and my friends! My entire network goes above and beyond their duties as a mom, a dad, brothers and sisters, aunts, uncles, cousins and friends to help me get through this. I know that they are always there for me, and for that I am grateful! I love you all more than I could ever put into words. My children are so grateful to have all of you in their lives and I make sure they know that everyday!!!!!!!!!!!!!!!!!
As Kale started showing signs of delayed development, I began to ask my mom, my aunts, "do you think Kale is delayed, or is Jaden just really smart?" We went with the answer, "Jaden is just really smart" for two reasons, because he really is and because we didn't want to go there with the other option! Anyways, one late night I was on the computer researching developmental delay and Autism popped up. I clicked on it and began reading. The article and symptoms described Kale to a tee! Speech delay, sensory issues, developmental issues, feeding aversions, etc. Right then, I knew it! It was as if my grama was speaking to me from the heavens and said, Get with it Sadie, it is Autism! You need to realize it so you can fight!
I screamed at the top of my lungs, "NOT my baby!!!!!!!!!!!!!!" "WHY?" "WHY HIM?" "WHY ME?" "WHY US?" Oh, I was hysterical! I called Mikey at work and screamed into the phone, "It's Autism!!! He has Autism!!!"
After that initial night, I began my fight. I researched and I researched! I was online entering words into google left and right, reading everything that I could. Kale began therapy with Early Intervention and we were off...Off on the road to recovery. There was only one problem...Kale still was not speaking! Not any words...what the hell I thought? This Speech therapy was supposed to be working! He was then officialy diagnosed at the age of 2 1/2 with Autism and Speech Apraxia. I will tell you people, the apraxia is worse than his Autism! I can deal with the behaviors, the food aversions, who cares if he never eats anything that is soft or smooth in texture! Not telling me that he loves me, now THAT is a problem!!! So, we added more therapy. Kale has been with Becky his speech path since the beginning! He loves her and vice versa. She has put in endless hours trying to get him on the right path away from speech apraxia! He still spends one hour a week with her now.
Kale entered early childhood and had a wonderful teacher and speech path. They also worked really hard to get him to talk. They got him to use a communication device that allowed him to share his feelings and to make known his wants and needs.
Over the Christmas season of 2007, I had a bad, bad time. April, 2008 hit and I said, THAT's IT!! We needed to do more for him......therapy alone wasn't doing it! He was still nonverbal and it was driving me crazy! I was not getting him better. I attended conferences, I read books and articles, I talked to other parents, I even started a support group.......why couldn't I get him better?
So, that April, I called the Pfeiffer Treatment Center. There was a DR. Allen Lewis there that had a son with Autism of his own and he specialized in biomedically treating kids on the Autism Spectrum. He was who I needed to see!! So, we did. We did a WHOLE bunch of initial tests and found out a lot about Kale's body and what was good and what was wrong.
(I will post test results at a later date)
Anyways, we then removed Gluten from his diet and wow! He started being more "with us" than "with Autism". It was a remarkable change! He was also on vitamins and nutrients that were specifically designated for what is body needed. He was more alert and aware of the environment around him. He realized that playing with Jaden could be fun for him. The interaction between them increased and was an unbelievable joy to watch. Jaden had been stripped of that bond that twins are supposed to have, but it was slowly emerging for him and Jaden was so happy!!!
We started Methyl B2 injections (yes, shots) and this was the miracle I was hoping would bring the words out for Kale. They are subcutaneous needles and they do not hurt! He gets a shot every other night and I was praying.....please let this work! Well, they did work but not to the extent I was hoping....miraculous! Again, he had more awareness, more attention, slept better at night (which believe me, was a miracle in itself!!! ), but no increase in speech. So, I hit a deep depression in September of 2008 that lasted till right before December. Thank God for Christmas, it pulled me back to reality.
So, April 2009 was the one year marker of doing Biomedical treatments with Kale and they have all made a difference. He is a different kid...he was successfuly included for half of his day during Kindergarten and was with typical learning kids as well as his Autism best friends!
This past year, I have developed three VERY special relationships with whom I call, "my Autism friends". I have leaned on these three girls so much over the past year and vise versa. Without them, I could not get through these days. I think of the relationships our children have come to develop and I am grateful. For they will never, ever be alone...Kale, Justin, Lily and Brody will always have one another and that is more than I could ask for right now. Also, their typical siblings will have one another to talk to about what it's like to have a sibling with Autism, and Jaden can get answers to his questions like, "mommy, why couldn't we just leave Autism at the store? Why does brother have to have this anyways? Why can't he talk to me like my friends can?" Heartbreaking I know, but that is my sons reality.
As we enter this second year of Biomedical treatments and never ending journey of recovering Kale from Autism, I am thankful for my husband! My Mikey is so supportive and loving and forgiving and understanding of Autism. He has a special bond with Kale that I cannot put into words. He lets me scream and cry at him and do the research on what we need to do...and he never tells me NO! Never!!! He is on board and for that I am grateful!
I am also grateful for my parents and my friends! My entire network goes above and beyond their duties as a mom, a dad, brothers and sisters, aunts, uncles, cousins and friends to help me get through this. I know that they are always there for me, and for that I am grateful! I love you all more than I could ever put into words. My children are so grateful to have all of you in their lives and I make sure they know that everyday!!!!!!!!!!!!!!!!!
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