Comments for Einstein Syndrome: Down Syndrome with a Positive Attitude

Comment on Sharpened by akismet-63e2ca2a673fb10452d4cbe2d006c9dfC

akismet-63e2ca2a673fb10452d4cbe2d006c9dfC — Tue, 26 Mar 2013 13:24:01 +0000

Miriam, thank you, thank you, thank you! I’ve followed you and Mary for years now- Bethany is 12- and hoped for the same successes! You’ve been such an inspiration- Einstein Syndrome, your blog, your research- thank you again for sharing such valuable info- I do tend to “coast” I don’t want to think about the future- In fact, I can’t believe Bethany is going to be 13 this July. I need a break to sharpen my axe! Thank you!

Comment on Sharpened by Nina Fuller

Nina Fuller — Wed, 20 Mar 2013 13:45:09 +0000

Thank you, Miriam, for your keen insight and writing, and for always sharing what you are learning.

Comment on Mary, the voter by Cindy Barclay

Cindy Barclay — Mon, 12 Nov 2012 03:17:08 +0000

Thank you Miriam for sharing! Bethany is only 12 and I’ve read about Mary for 12 years now! She (and you) have always pressed ahead as pioneers- forging the way and showing us it can be done! You help us reach for the stars! Love ya!

Comment on Constipation in Down syndrome by sally

sally — Sat, 22 Sep 2012 10:00:21 +0000

Jimmy is 16 yrs old (ds and autism) he has always had bowel issues. Since we started using P.E.G. polyethylineglycol he has had normal bowel movements. it’s available at your local pharmacy over the counter. Dr. says it does not get absorbed by the body . just passes through and takes the bm with it. I find it does soften the stool too, We’ve been using peg for 4 years now with good results.

Comment on Sound Therapy by KarenB

KarenB — Sat, 21 Jul 2012 00:03:35 +0000

Our son (age 8) has Down Syndrome and has developed autistic like tendencies (lots and lots of stimming, meltdowns, severe regression in language — currently speaking only about 5 words) since having lots of seizures. The sounds that seem to get him are women laughing, clapping (like in a large auditorium at church), people talking or singing into a microphone, the whistle at PE class… Sometimes he will cry, other times put his hands over his ears, and sometimes he will just get hyperstimulated. But he also likes making loud noises — like banging his cup on the table. His O.T. recommended sound therapy (not sure which one) but insisted that to engage in it, he had to wear ear phones. Well, he doesn’t like anything on his head — we tried at school and home, and he just rips them off. I aked the OT if we can just play the CDs without the ear phones — say, in an enclosed environment, like the car or a small room, but she insists that it must be done with the ear phones on. So…for now, we’re just playing lots of classical music, gregorian chants, and just regular kids songs — just playing music all day long, and that does seem to be helping. He can go to church now without having a meltdown.

Comment on 4. Research the Vaccine Controversy for Yourself by Renate

Renate — Thu, 19 Jul 2012 19:21:11 +0000

Yes, research BEFORE you decide.
I have two children with Down syndrome, 8 and 6 years old. They are sisters and both born with Duodenal artresia, surgically corrected days after birth. The eldest received all vaccinations, I was afraid she would ‘catch’ a disease. She developed quite nicely untill appr. 18 months. Then she started regressing. She is severely autistic.
We stopped all vaccinations immediately with her younger sister once I suspected a connection between the vaccinations and the regression. . Her younger sister speaks, reads, writes and is not autistic.

Comment on Long term negative outcomes of vitamin therapy by KarenB

KarenB — Wed, 18 Jul 2012 14:35:40 +0000

We credit Nutrivene for the health benefits alone. Recently, I got copies of my two older “normal” kids’ pediatric records (when I found out that they were about to be shredded because they were now adults. Thumbing through them, I noted the number of times they were hauled to the pediatrician for ear infections and other common childhood illnesses causing high fevers and such. Probably 4 or 5 “sick” visits to the doctor each year up through age 4 or 5. On the other hand, our youngest child, who started Nutrivene as an infant, only aaveraged about one (sometimes none) “sick” visit a year to the doctor in his first 5 years of life. He never had ONE ear infection during that entire time. Never had a stomach flu during that time. A couple mild colds, from which he recovered in about 3 days.

Comment on 2. Beware of Creeping Low Expectations by KarenB

KarenB — Wed, 18 Jul 2012 14:25:53 +0000

I have to consistently fight…not my own low expectations…but the low expectations of my child’s IEP team. 90% of the goals they suggested were skills he had already accomplished. It seemed they didn’t think he could progress any further!

Comment on Iron Depletion Warnings by Renate

Renate — Fri, 29 Jun 2012 16:32:27 +0000

Before supplementing iron, please check this info (from GAPS site) as supplementing with iron could make things worse:

The majority of children and adults with neurological and psychiatric conditions look pale and pasty. When tested they show various stages of anaemia, which is not surprising. To have a healthy blood we require many different nutrients: vitamins (B1, B2, B3, B6, B12, K, A, D, etc), minerals (Fe, Ca, Mg, Zn, Co, Se, boron, etc.), essential amino-acids and fats. These patients not only cannot absorb these nutrients from food, but their own production of many of them in the body is damaged. On top of that people with damaged gut flora often have particular groups of pathogenic bacteria growing in their gut, which are iron-loving bacteria (Actinomyces spp., Mycobacterium spp., pathogenic strains of E.Coli, Corynebacterium spp. and many others). They consume whatever iron the person gets from the diet, leaving that person deficient in iron. Unfortunately, supplementing iron only makes these bacteria grow stronger and does not remedy anaemia. To treat anaemia the person requires all the nutrients we have mentioned, many of which healthy gut flora supplies

Comment on Anderson Woods Camp by yuthanamuntzer@yahoo.com

yuthanamuntzer@yahoo.com — Thu, 07 Jun 2012 21:16:47 +0000

Miriam we are so excited about Rahmel attending this summer, he is already telling us “no mom no dad , just Rahmel going to camp” he is so happy to be going