Friday, March 15, 2013
A helpful link on going GFCFSF
Going GFCFSF in 10 weeks, a must read for those just starting out with a diet intervention, off the TACA website.
Happenings and a current list of Liam's supplements and protocol
A few tid bits of information, just to catch up:
Turns out Dr. Jill will still be covered through our insurance, which is a huuuuuuuuge relief.
If you have had any personal experience in dealing with Insurance companies and the treatment of Autism, you know it can be extremely difficult to find and obtain services from pediatricians and therapists specializing in bio medical interventions and treatments, that insurance will actually cover. And, even though our insurance covers her general pediatric services, there are many treatments and testing that are important and recommended which will still have to come out of pocket. Insurance either wont cover at all or will only partially cover. Regardless, her presence, guidance, advice and knowledge is GOLDEN and we are blessed to have her.
About a month ago we had a back and forth with Liam's teacher Ms. Jill (Not to be confused with Dr. Jill lol)
We were requesting more days and OT for Liam. She kept pushing back stating he wasnt ready for more days and that he didn't need the OT.
So a meeting was held, to discuss our "concerns", and go over how Liam was doing up to that point. Overall, the meeting went wonderfully.
I went into it, with a Warrior Mama/Battlegrounds mindset and after the first 10 minutes all of that stress melted away.
I went into it, with a Warrior Mama/Battlegrounds mindset and after the first 10 minutes all of that stress melted away.
Jason and I got to meet his Speech Therapist which i had only met very briefly once before, alng with the Occupational Therapist, and their consultant.
In a nutshell, they went over all of Liams strengths and the things he is struggling with now, which is manly stamina. He sort of fizzles out by 1 pm and is pretty much over it which can lead to meltdowns or just a general lack of interest in participating during that last hour. This is why Ms. Jill was saying that he wasnt ready for more days- she basically was saying that they would like him to be able to make use of the majority of the time he spends there and wanted to build up his stamina a bit more before adding any more days, which we understood. That was pretty much the only struggle at this point.
They said he is no longer delayed in his fine motor skills, for what they require of him at school. In fact he is on par and even more advanced that some 3 year old nuerotypical children his age. he is happy and enjoys school unless he gets tired which usually happens around 1 pm and then if he is, then he is done and doesn't want to be bothered.
They said he is no longer delayed in his fine motor skills, for what they require of him at school. In fact he is on par and even more advanced that some 3 year old nuerotypical children his age. he is happy and enjoys school unless he gets tired which usually happens around 1 pm and then if he is, then he is done and doesn't want to be bothered.
They went over a day to day with him and showed me some of the therapies and projects that he is currently doing. I was wonderfully surprised at many of the things they told me he was doing, because at the time- he was not doing those things at home.(such as puzzles, beading, sitting on potty with no issues, drawing circles and tracing straight lines, coloring within lines, turning knobs, playing with all toys appropriately, etc...)
I realized that i was not giving Liam enough credit and that he was and is more capable than i was giving him credit for. The meeting was a bit of an eye opener for me and i am grateful for that.
They said he "LOVES to work" and any project they put in front of him he dives in to. He focuses well and concentrates when he needs to, as long as he is "in it", and not tired (going back to the 1 pm wall he hits).
When it was all said and done, it was decided that he will be given 1 additional day, in the mornings. So he will be attending Tuesdays at 11, Wednesdays at 830, and Thursdays at 11. If he seems to do better in the early morning then we will switch him to all early morning.
Here at home, we will be working on Liam being more independent. Working with him to go on the potty more often, dress himself (buttons and zippers will be an on going "project for a bit" ) , put his shoes on and off. Since the meeting he has shown interest in puzzles and painting with finger paints, is going on the potty more frequently, he is helping to dress himself, brush his own teeth, and the list goes on- all within the month. Goes to show that, regardless of developmental delays or "special needs"..... "Give a man a fish, and you have fed him once. Teach him how to fish and you have fed him for a lifetime."
They were all extremely informative, helpful and I walked away finally feeling like we were all on board with "Team Liam".
And, while he may not require or qualify for OT at school for THEIR needs, i know he needs it in other aspects, so we will be acquiring it at some point in the every near future, just on our own.
And, while he may not require or qualify for OT at school for THEIR needs, i know he needs it in other aspects, so we will be acquiring it at some point in the every near future, just on our own.
We received his blood work results back and they showed that he had low levels or iron and D. He is also showing higher levels of something (i dont have my notebook in front of me sorry, need to look up the technical jargon) in his bloodstream that is caused by anxiety and stress which is common in people with autism. The unknown is hard for people on the spectrum to deal with and because of difficulties with communication and understanding, it is one of the biggest challenges. Dr Jill recommended Levocarnitine, and an additional iron supplement which he is now taking.
Additionally we introduced a second probiotic, a vegan and generic version of the brand name Florastor (which has dairy so wont work for us), which is called Saccharomyces Boulardii and made by Jarrow Formulas. This particular probiotic helps control the yeast overgrowth in his gut which helps with his leaky gut which in turn helps with behaviors, focus and moods. Only a few days in to taking this additional probiotic he went from going number two up to 5 times a day, to now once or twice a day. Thank God!
A few weeks ago i forwarded a video talking about bio medical interventions and healing for Autism to some family members. In the email i wrote the following:
The first half talks more about recognizing symptoms and the second half goes into testing and bio medical treatment.
We have yet to have his stool and urine tested, which is an important step in knowing his exact deficiencies but unfortunately insurance doesn't cover the testing completely so for the time being it is in hold, but we will be doing this (God willing) sooner than later. Just another step forward to healing our Liam.
I have to say that since starting his dietary intervention (gfcfsf) and along with supplementing the majority of his "stimming", sleep issues and disruptive behaviors have improved dramatically.
This, along with therapies at home and school have also directly attributed to Liam no longer having a fine motor delay. Over the past few months we hanger had numerous "breakthroughs" and these typically occurred shortly after starting a new supplement, pro biotic, or yeast overgrowth treatment. He is improving on a pretty consistent basis these days and i completely believe in the bio medical approach and healing. I am also so grateful to have Dr Jill to help guide and support us. We have a ways to go but have faith and confidence that we are headed in the right direction.
We had a second assessment visit to the Marcus Autism Center this past Monday. The official diagnosis date is April 22. Boy, they sure do make you jump through hoops to get this diagnosis. As I have stated before we need the official diag., in order to apply for the Katie Beckett Waiver/Deeming Waiver. This waiver will make it possible for us to receive the necessary therapies (Speech, OT, Sensory Integration therapy) to be able to give Liam the opportunity to thrive and have the best possible outcomes in life.
I am in the process of registering for the Walk Now for Autism Speaks . It is my hope to be able to raise some money towards this worthy cause. I look forward to participating in the walk and meeting some FELLOW WARRIORS/ families who can relate :)
More on the walk in a later post...
Here is the list of Liam's Supplements and protocol-
A.M. in his Orange Juice:
1 tsp. Nordic Naturals Arctic D Cod Liver Oil
1 tsp. Kirkman Labs Spectrum Complete Multi Vitamin
1 capsule (i open the capsule and pour the powder into his juice) Jarrow Formulas Saccharromyces + MOS
1/2 tsp. Levocarnitine (prescribed by our pediatrician, Dr. Jill)
1/3 tsp. TMG with Folic Acid and B12 powder
First thing in the morning i rub a dab of ASD Kids Magnesium Sulfate cream. I use this cream 4-6 times a day, rubbing a dab on his back and arms or legs.
Lunch time:
1/2 tsp. Levocarnitine
1 capsule Kirkman Labs Iron 5g
1 capsule Kirkman Labs Enzyme Complete DPP-IV (You are supposed to give enzymes with every meal. However, you are not supposed to give enzymes at the same time as probiotics because they will cancel each other out, for lack of a better explanation Since i give him a probiotic in the morning at and night this only leaves me one open window, lunch time. I am still trying to fine tune this, since i would like him to get the full benefits of the enzymes, but there is only so much juice i am willing to give him a day and only so many hours in a day so ....yeah.)
P.M.:
1 capsule Kirkman Labs Pro Bio Gold (Its my understanding this particular probiotic works best given at night, and all by itself.)
We continue to soar!
Additionally we introduced a second probiotic, a vegan and generic version of the brand name Florastor (which has dairy so wont work for us), which is called Saccharomyces Boulardii and made by Jarrow Formulas. This particular probiotic helps control the yeast overgrowth in his gut which helps with his leaky gut which in turn helps with behaviors, focus and moods. Only a few days in to taking this additional probiotic he went from going number two up to 5 times a day, to now once or twice a day. Thank God!
A few weeks ago i forwarded a video talking about bio medical interventions and healing for Autism to some family members. In the email i wrote the following:
The first half talks more about recognizing symptoms and the second half goes into testing and bio medical treatment.
We have yet to have his stool and urine tested, which is an important step in knowing his exact deficiencies but unfortunately insurance doesn't cover the testing completely so for the time being it is in hold, but we will be doing this (God willing) sooner than later. Just another step forward to healing our Liam.
I have to say that since starting his dietary intervention (gfcfsf) and along with supplementing the majority of his "stimming", sleep issues and disruptive behaviors have improved dramatically.
This, along with therapies at home and school have also directly attributed to Liam no longer having a fine motor delay. Over the past few months we hanger had numerous "breakthroughs" and these typically occurred shortly after starting a new supplement, pro biotic, or yeast overgrowth treatment. He is improving on a pretty consistent basis these days and i completely believe in the bio medical approach and healing. I am also so grateful to have Dr Jill to help guide and support us. We have a ways to go but have faith and confidence that we are headed in the right direction.
We had a second assessment visit to the Marcus Autism Center this past Monday. The official diagnosis date is April 22. Boy, they sure do make you jump through hoops to get this diagnosis. As I have stated before we need the official diag., in order to apply for the Katie Beckett Waiver/Deeming Waiver. This waiver will make it possible for us to receive the necessary therapies (Speech, OT, Sensory Integration therapy) to be able to give Liam the opportunity to thrive and have the best possible outcomes in life.
I am in the process of registering for the Walk Now for Autism Speaks . It is my hope to be able to raise some money towards this worthy cause. I look forward to participating in the walk and meeting some FELLOW WARRIORS/ families who can relate :)
More on the walk in a later post...
Here is the list of Liam's Supplements and protocol-
A.M. in his Orange Juice:
1 tsp. Nordic Naturals Arctic D Cod Liver Oil
1 tsp. Kirkman Labs Spectrum Complete Multi Vitamin
1 capsule (i open the capsule and pour the powder into his juice) Jarrow Formulas Saccharromyces + MOS
1/2 tsp. Levocarnitine (prescribed by our pediatrician, Dr. Jill)
1/3 tsp. TMG with Folic Acid and B12 powder
First thing in the morning i rub a dab of ASD Kids Magnesium Sulfate cream. I use this cream 4-6 times a day, rubbing a dab on his back and arms or legs.
Lunch time:
1/2 tsp. Levocarnitine
1 capsule Kirkman Labs Iron 5g
1 capsule Kirkman Labs Enzyme Complete DPP-IV (You are supposed to give enzymes with every meal. However, you are not supposed to give enzymes at the same time as probiotics because they will cancel each other out, for lack of a better explanation Since i give him a probiotic in the morning at and night this only leaves me one open window, lunch time. I am still trying to fine tune this, since i would like him to get the full benefits of the enzymes, but there is only so much juice i am willing to give him a day and only so many hours in a day so ....yeah.)
P.M.:
1 capsule Kirkman Labs Pro Bio Gold (Its my understanding this particular probiotic works best given at night, and all by itself.)
We continue to soar!
Love and light,
A
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