We had our consult today with Liliana Sacarin. She adores David. She was really good with him. She had him listen on the headphones and pressed the "sound button" then he got to press the button for her! He really liked that. He also enjoyed the microphone where he could talk and hear himself loud and clear in the headphones!
David will start the Tomatis Listening method on Monday May 21st from 4-6pm.
Dr. Sacarin and I sat down and made goals while David played.
1) Improved Muscle Tone Regulation (fine and gross motor, ability to ride a bike, catching & throwing balls)
2) Improved Eye Contact
3) Improved Ability to listen & follow directions- as opposed to the "immature" way he will repeat the direction he is given to help him process it before he goes and does the task.
4) Decreased sensitivity to foods. His tolerance to try new foods should increase.
5) Pain threshold will DECREASE- may start to complain more when he isn't feeling well or bumps into something. (*** side note: David face planted in the toy room in front of a young man receiving his listening treatment...he said "Wow, you have a strong son, I would have cried so hard")
6) Improved Ability to express emotion (longer sentences & more talking)
7) Communication! An exchange of conversation (I will cry when this happens)
8) Social Interaction (Playing WITH peers, not parallel play)
9) General Maturity will start to occur
I can't express the excitement to get started. I have a wonderful case manager at my insurance company who is helping get things in order to POSSIBLY have insurance play a part in paying for this treatment. That would be such a blessing! Dr. Sacarin allows payment plans which is also a blessing. So we are able to get started in May instead of waiting for July when my health savings starts over.
Will keep you posted on more milestones as they occur...
We have one more week at B12 shots every other day...then we go daily!
I feel in my gut we are on the verge of a beautiful breakthrough. Can't wait for God to continue to glorify himself in the changes in our son!
Thursday, April 19, 2012
Saturday, April 14, 2012
Learning something new...
I started taking David to OT this Friday. I decided to do outside OT because David doesn't get much time with his OT at school and we know he needs more help with motor skills.
Learned about 2 things to help my son.
David responds well to squeezes. Not full body hugs with pillows but firm grips with both hands on his arms and legs.
I never knew.
Now I know and we will do this at home at least 4-5 times a day to help him "load his nervous system".
David likes Theraputty. Hide marbles in it and he gets a fine motor workout digging them out!
Already ordered some on-line.
Can't wait to learn about more ways to help my boy in two weeks.
I just need to know what to do. Show me and I'll do it.
Wednesday, April 11, 2012
Something else...
So...we finally made it in to the doctor on March 29th for David's blood draw and IV glutathione. It was interesting, but we got it done. David was very calm after the glutathione, which I hear is very common.
Then we wait for 1 week for the results.
During that time I went to David's school for a conference with his teacher and OT/Speech Therapists. They have discovered that David is a "sensory seeker". David has not been able to focus, especially during group time, he would tip back and fall over in his chair consistently which would distract the class. He is also not ready for pen/paper work or scissors, he's still too far behind on the much needed fine motor skills to operate these simple items. So, the teachers are working on getting him to focus and strengthening his fine motor skills though games to hold his interest.
The therapists tried a few things and found that if they have David sit on a vibrating chair pad AND wear headphones with an MP3 player playing classical music that David would focus better.
Interesting... one would think that might be more distracting.
Well, one week after the blood draw I went back to visit David's doctor for the results and talk about our battle plan as it continues.
We were focused on that aluminum in his system that was so high (10) before... it was down to 6! The arsenic in his system had stayed the same though and the fractionated urine test showed that it was a HIGH amount (out of range) of inorganic (toxic) arsenic. Where is this arsenic coming from? More than likely, fruit juice and organic apples...I'm sad to say. I'm going to have to start juicing from scratch with dark berries to provide the "base" we use for giving David all his supplements during the day...and no more juice box in his school lunch.
If it's not one thing...it's another, right?
Ok- so we put David on glutathione suppositories every night since we found out two months ago about that high amount of aluminum. We also sent in that urine test because we wanted to know more about the arsenic. We have had David on B12 shots every 3rd day for quite awhile...with small changes but nothing truly significant.
Well... the test that we took recently showed an elevated MCV, which the doctor says can show up when the body is lacking B12 and Methyl folate... so we needed to do more.
Kids with autism are kind of like onions... there are all these layers...and those layers are revealed by doing testing (blood draws, consults with PT/OT/Speech/Sensory etc) only then can we truly start to understand what is going on in our child's bodies... because autism is different in every child.
So- we will do B12 shots every other night for 2 weeks and then move to every night until further notice. We are also increasing the Methyl Folate (5-MTHF) from 1 mg to 2mg. I'm excited to see changes... we are moving in the right direction, I know we are.
I was so sad to hear that David is the kid who needs the most attention in his class from the teachers/para-educators... how hard is that to hear as a parent? But then...a glimmer of hope... because I strongly believe that God has a major hand in my child's life and with me and Troy being his parents.
I told David's doctor about the findings at David's school with his teachers and she immediately recommended the Tomatis method, low and behold one of 8 specialists happens to be right up the road from our doctors office.
I am still learning about this method, but I am also fascinated and can not wait to report on the changes we will see in David.
Basically, they're 2 hour "listening" sessions that retrain the brain to sift through unnecessary stimuli. Some of our kids are overwhelmed because of the barrage of stimuli...right? This helps them learn more effectively and sort thru items that would normally distract them so they can focus better. Listening effectively, whodathunk?
Check out: www.sacarin.com there is also a link at the bottom (for some light reading) on the research conducted with the Tomatis method in children with developmental delay and autism.
Stay tuned...
Then we wait for 1 week for the results.
During that time I went to David's school for a conference with his teacher and OT/Speech Therapists. They have discovered that David is a "sensory seeker". David has not been able to focus, especially during group time, he would tip back and fall over in his chair consistently which would distract the class. He is also not ready for pen/paper work or scissors, he's still too far behind on the much needed fine motor skills to operate these simple items. So, the teachers are working on getting him to focus and strengthening his fine motor skills though games to hold his interest.
The therapists tried a few things and found that if they have David sit on a vibrating chair pad AND wear headphones with an MP3 player playing classical music that David would focus better.
Interesting... one would think that might be more distracting.
Well, one week after the blood draw I went back to visit David's doctor for the results and talk about our battle plan as it continues.
We were focused on that aluminum in his system that was so high (10) before... it was down to 6! The arsenic in his system had stayed the same though and the fractionated urine test showed that it was a HIGH amount (out of range) of inorganic (toxic) arsenic. Where is this arsenic coming from? More than likely, fruit juice and organic apples...I'm sad to say. I'm going to have to start juicing from scratch with dark berries to provide the "base" we use for giving David all his supplements during the day...and no more juice box in his school lunch.
If it's not one thing...it's another, right?
Ok- so we put David on glutathione suppositories every night since we found out two months ago about that high amount of aluminum. We also sent in that urine test because we wanted to know more about the arsenic. We have had David on B12 shots every 3rd day for quite awhile...with small changes but nothing truly significant.
Well... the test that we took recently showed an elevated MCV, which the doctor says can show up when the body is lacking B12 and Methyl folate... so we needed to do more.
Kids with autism are kind of like onions... there are all these layers...and those layers are revealed by doing testing (blood draws, consults with PT/OT/Speech/Sensory etc) only then can we truly start to understand what is going on in our child's bodies... because autism is different in every child.
So- we will do B12 shots every other night for 2 weeks and then move to every night until further notice. We are also increasing the Methyl Folate (5-MTHF) from 1 mg to 2mg. I'm excited to see changes... we are moving in the right direction, I know we are.
I was so sad to hear that David is the kid who needs the most attention in his class from the teachers/para-educators... how hard is that to hear as a parent? But then...a glimmer of hope... because I strongly believe that God has a major hand in my child's life and with me and Troy being his parents.
I told David's doctor about the findings at David's school with his teachers and she immediately recommended the Tomatis method, low and behold one of 8 specialists happens to be right up the road from our doctors office.
I am still learning about this method, but I am also fascinated and can not wait to report on the changes we will see in David.
Basically, they're 2 hour "listening" sessions that retrain the brain to sift through unnecessary stimuli. Some of our kids are overwhelmed because of the barrage of stimuli...right? This helps them learn more effectively and sort thru items that would normally distract them so they can focus better. Listening effectively, whodathunk?
Check out: www.sacarin.com there is also a link at the bottom (for some light reading) on the research conducted with the Tomatis method in children with developmental delay and autism.
Stay tuned...
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