Three and a half-months can fly by! I can't believe it's been so long since I posted.
This fall gave us a journey into targeted nutritional supplementation for Ari. That's fancy speak for what vitamins and other nutrients will help Ari be healthier, function better and not get so sick again.
Thanks to a Down syndrome conference at Arkansas Children's Hospital, we found our way to a clinician researcher (Dr. Richard Frye) and basic scientist researcher (Dr. Jill James) at ACH that look at metabolic dysfunction in kids with autism and/or Down syndrome. Autism and Down syndrome have some common biological dysfunctions, and we are in the process of figuring out some of Ari's issues and a treatment plan. We are extremely grateful to have gotten him tested...and we have the results....but we're still waiting for a follow-up appointment to find out how to address his nutritional deficits.....it's no fun waiting.
Just getting the blood and urine test, though, was a learning experience. Because one component of the testing was for a research study, we had to pull Ari off his regular supplement regimen for 2 weeks. The first time we tried this, he made it 10 days and then got slammed with croup, a sinus infection and a yeast infection. Our second attempt was successful but he was borderline ill and we held our breath bringing in every homeopathic, alternative preventative step we could try. As a result, I've developed a nice arsenal of tricks to ward off illness:), and not that I did before, but I REALLY don't doubt the value of his supplements now. Aside from getting sick, his energy and engagement level drops by more than half without his supplements. It's a pretty startling difference.
Meanwhile, though, Dr. Frye put Ari on a 3x/week shot of methylcobalamin, N-acetyl cysteine and folinic acid. It's made a big difference in Ari's energy level and gross motor skills. It addresses the low vitamin B12 (and specifically getting B12 into the nervous system), low glutathione and low folinic acid levels common in Down syndrome. It has been reported to have a huge impact on speech in some kids with autism; for eg, non-verbal kids begin speaking and then continue to build a vocabulary. We did not see a big impact on Ari's speech with the shots - he still has 2 solid words, "ball" and "bye - bye" - but he's more enthusiastic now with everything he does, including speaking and his receptive language skills have definitely improved. It's also important to remember that in Down syndrome, there is also a motor component to speaking that is a challenge for our kids, so even though the cognitive component may be better from the shots, he still has to break through the low muscle tone and motor control.
Ari has his first dental appointment tomorrow...and we have an appointment with his naturopath in a couple weeks....so more news to come soon.
But now on to the good stuff...how is Ari? Well, aside from some chronic respiratory issues from getting off the supplements and a quick round of croup last week, he's doing so well. He's quite mobile, even runs when food, a bath or Mickey Mouse are the carrot. We've held our breath a lot this fall just hoping he would not end up in the hospital and we're grateful we've stayed hospital free. This time of year is not kind to kiddos with Down syndrome.
Here are some pictures from the past few months. I promise to blog more in 2016; I actually wrote several blogs, but then never posted them. I'll work on my follow through this year:)
Thank you all for seeing us through last spring and summer. Your love and prayers make a difference.
Happy New Year!
Ari was his favorite Mickey Mouse for Halloween.
Stylin'
Smilin'
Sibling love
Cookies with Santa
His feet don't reach the pedals, but he sure makes a great photo.
And my personal favorite. Our new house came with a basketball goal and an old net. We got a new net and Ari, lover of all things involving a ball, got to try it out.
Ari plays basketball
Love to all,
Dorothy
This fall gave us a journey into targeted nutritional supplementation for Ari. That's fancy speak for what vitamins and other nutrients will help Ari be healthier, function better and not get so sick again.
Thanks to a Down syndrome conference at Arkansas Children's Hospital, we found our way to a clinician researcher (Dr. Richard Frye) and basic scientist researcher (Dr. Jill James) at ACH that look at metabolic dysfunction in kids with autism and/or Down syndrome. Autism and Down syndrome have some common biological dysfunctions, and we are in the process of figuring out some of Ari's issues and a treatment plan. We are extremely grateful to have gotten him tested...and we have the results....but we're still waiting for a follow-up appointment to find out how to address his nutritional deficits.....it's no fun waiting.
Just getting the blood and urine test, though, was a learning experience. Because one component of the testing was for a research study, we had to pull Ari off his regular supplement regimen for 2 weeks. The first time we tried this, he made it 10 days and then got slammed with croup, a sinus infection and a yeast infection. Our second attempt was successful but he was borderline ill and we held our breath bringing in every homeopathic, alternative preventative step we could try. As a result, I've developed a nice arsenal of tricks to ward off illness:), and not that I did before, but I REALLY don't doubt the value of his supplements now. Aside from getting sick, his energy and engagement level drops by more than half without his supplements. It's a pretty startling difference.
Meanwhile, though, Dr. Frye put Ari on a 3x/week shot of methylcobalamin, N-acetyl cysteine and folinic acid. It's made a big difference in Ari's energy level and gross motor skills. It addresses the low vitamin B12 (and specifically getting B12 into the nervous system), low glutathione and low folinic acid levels common in Down syndrome. It has been reported to have a huge impact on speech in some kids with autism; for eg, non-verbal kids begin speaking and then continue to build a vocabulary. We did not see a big impact on Ari's speech with the shots - he still has 2 solid words, "ball" and "bye - bye" - but he's more enthusiastic now with everything he does, including speaking and his receptive language skills have definitely improved. It's also important to remember that in Down syndrome, there is also a motor component to speaking that is a challenge for our kids, so even though the cognitive component may be better from the shots, he still has to break through the low muscle tone and motor control.
Ari has his first dental appointment tomorrow...and we have an appointment with his naturopath in a couple weeks....so more news to come soon.
But now on to the good stuff...how is Ari? Well, aside from some chronic respiratory issues from getting off the supplements and a quick round of croup last week, he's doing so well. He's quite mobile, even runs when food, a bath or Mickey Mouse are the carrot. We've held our breath a lot this fall just hoping he would not end up in the hospital and we're grateful we've stayed hospital free. This time of year is not kind to kiddos with Down syndrome.
Here are some pictures from the past few months. I promise to blog more in 2016; I actually wrote several blogs, but then never posted them. I'll work on my follow through this year:)
Thank you all for seeing us through last spring and summer. Your love and prayers make a difference.
Happy New Year!
And my personal favorite. Our new house came with a basketball goal and an old net. We got a new net and Ari, lover of all things involving a ball, got to try it out.
Ari plays basketball
Love to all,
Dorothy
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