The testing at the motor cognition lab went well. CB was easily redirected and tried to a certain degree on all the activities/tasks requested of him. I got the chance to observe the testing and was impressed with CB’s skills on the verbal component of the testing, his tossing skills, and with some of the comparison components of the non-verbal portion. Prior to the moment of testing, we were unaware that administration of an intelligence test was planned. Many times intelligence tests may not accurately reflect your child’s mental capabilities when they have verbal difficulties and/or motor-planning issues. Since CB is younger than most of the kiddos they test, there were only 2 tests they administer that applied to CB. One was an intelligence test, Kaufman Brief Intelligence Test, 2nd ed. (KBIT-2), and the other was the standard test provided for evaluating motor skills for a child suspected of DCD (Developmental Coordination Disorder), Movement Assessment Battery for Children, 2nd ed. (MABC-2). We also completed a parent response test related to his sensory needs. Some positive findings were that the intelligence tests prove that CB’s motor skills are not due to a lack of intelligence and that the researcher was impressed with the progress CB has made since we last talked. We knew that CB is an intelligent boy and that his motor-planning issues are not related to a mental deficit. It is nice to see that reflected in the testing, as well. The results of the motor test still conveyed a severe issue with motor skills, but the researcher felt very optimistic about his suspected prognosis. She wants to test him again around his 6th birthday and she thinks the gap between his skills and a typically developing child’s skills will more closely align. She also thinks CB will eventually be mostly indistinguishable from his typically developing peers. This is all fantastic news! It doesn’t mean we are able to lay off any of his therapies or diet restrictions but what it does mean is that the therapies and diet ARE HELPING!
NUTRITION UPDATE: I also thought this would be a good time to post some updates about CB’s supplements and progress. About a month ago, we started CB on GSE and updated his probiotics due to the results of the OAT test that reflected his yeast/fungi levels were quite high. A couple of weeks ago, we added oil of oregano, as well. L-carnitine, 250mg dosage, was added 3 days ago, as well, due to other issues posted within the OAT test. We are trying to stagger most of the changes to make it easier to pinpoint the culprit if any issues arise. A rash on CB’s bottom appeared last Sunday. This is the day CB started L-carnitine. He also was playing outside naked, so we thought it could be irritation from something outside. The rash was still present as of last night. We plan to stop giving him GSE and oil of oregano for a little while. We noticed many parents only supplement these for short periods of time. We also want to see if this will result in any changes with the rash. If not, then we will cut out the L-carnitine and see if that is the culprit. CB’s appetite has definitely increased since starting L-carnitine. He can use the extra pounds though :). We are also lowering CB’s oxalate intake. This will be a gradual process since there is quite a bit to learn about oxalates and it is recommended to reduce oxalate intake slowly to help the body adjust easier. We also have incorporated some reflex exercises into our routine so I included those. Starting tomorrow, his supplement intake and exercise routine will be as follows:
Morning
- D3 – 1 drop in water or diluted juice
- L- Carnitine – 1/2 capsule in water or diluted juice (Now 500 mg) – plan to increase to 500 mg within the week
- Multivitamins – 2 pills (Vitamin Code Kids: Chewable Whole Food Multivitamin for Kids)
- Fish Oil – 2 teaspoons (Complete Omega liquid)
- During storytime
-
- Spinal Perez
- Body Brushing – only moving down at this time b/c he is too tactile sensitive to move in both directions
- Hand Awareness Exercise – move fingers across the top, bottom, and each side of the palm & hold pressure with one thumb on the babkin pressure point in the palm and with the other hand use 2 fingers to extend and apply pressure to each finger individually and starting with the thumb with extra movements along 2 places at the bottom of the palm to complete the circle
Daytime
- Body Brushing – when I remember (this one gets forgotten more often)
- Carry backpack to/from places to provide extra input into his body and provide extra “hard work”
Night
- Probiotics – 1 capsule (Ultimate Flora: 30 billion – 10 Probiotic Strains)
- During storytime
- Spinal Perez
- Body Brushing – only moving down at this time b/c he is too tactile sensitive to move in both directions
- Hand Awareness Exercise – move fingers across the top, bottom, and each side of the palm & hold pressure with one thumb on the babkin pressure point in the palm and with the other hand use 2 fingers to extend and apply pressure to each finger individually and starting with the thumb with extra movements along 2 places at the bottom of the palm to complete the circle
A few final notes are that daily has been introduced off and on for the past several months. We thought we didn’t see any noticeable signs. For the past 2 times CB has had dairy, he had pee accidents during the day. This may be coincidental, but we are going to monitor it. Otherwise, has made huge strides in the potty-training arena. He now has accidents maybe 1-2x a week and sometimes less often. At night, he still fills his diaper. He rarely has a pee accident during naps too. His stool issues have not resurfaced, which is awesome. However, HB is now having issues off and on so we are moving forward with getting bloodwork on him to see if he has any of the issues CB has/had.
The last note is that the bloodwork required for the Whole Exome Sequencing (WES) was donated today by CB, Olem, and myself. We will meet with the geneticist in March to discuss the results.