Thursday, March 14, 2013

Mission Possible

We returned from a WONDERFUL cruise a few weeks ago.

 It was the Mission Possible Down syndrome Conference, and it just happened to be on a cruise ship! J It was a little hectic at times with the girls, but it was a great experience and we all had a good time. We got so much information that we had never even heard of and are still in the process of sifting through it. Most of the information was about the CMF Protocol and Neurodevelopment.

The CMF Protocol is a list of vitamins and medicines that have been studied and analyzed and used to help children with Down syndrome. Here is the link to the Protocol: 

Brandon and I were a little shocked that we hadn’t heard of ANY of this from our friends or from anyone in the Down syndrome Association of Northern Virginia. We haven’t really sat down and discussed what we want to try, if anything, but Brandon did speak to our pediatrician yesterday when he took the girls and he gave us his opinion on all of them. Most of the vitamins he said would be no problem to try. As far the Prozac, he says we need to talk to Dr. Anderson at the Down syndrome clinic to get her opinion and thoughts about the process. Also, the Focalin XR would only be used if Lorelei were diagnosed with ADHD.  The use of these vitamins and medicines are said to increase the neural connections in the brain. In other words, it helps children to remember what they have learned and continue to use it and increase the complexity of the skill as they practice.

The Prozac seemed to be the most controversial. There has only been 3 studies done with the Prozac and they were all done on mice. They were all successful studies, but they were mice… Here are some links to the articles of the studies that have been done:

I found this reaction to the CMF Protocol while conducting some research:

Brandon and I kind of fall between the let’s try it and why do we need to? We understand that people want their children to be “normal,” but shouldn’t society learn to accept everyone for the differences? Why do we need to make our children “fit” in with everyone else? I think this was the only issue Brandon and I really had with the conference. It seemed that a lot of the families are out to make their children “normal,” to fit in with everyone around them. Yes, we all want our children to be successful, but there is nowhere that says they have to be the same as everyone else. Some of the speakers referred to “our children with Down syndrome need…” Yes, they all have Down syndrome, but just like typical children, they are all DIFFERENT. My child may not need the same thing your child does.

It seemed from talking and reading other’s blogs when we returned from the trip, that a lot of these families did not have good experiences with Early Intervention. We have had a GREAT experience and Lorelei has excelled so much because of this. Due to the bad experiences, many families turned to Neurodevelopment. Here is a website that discusses the background and gist of neurodevelopment:

For the most part, it is being said that physical therapy and occupational therapy is not done correctly for children with Down syndrome. With the low muscle tone, these children are to do things a little differently in order to develop the muscles correctly. Read the website above for full information about the process! It’s rather interesting, but we aren’t sure if we agree with all of it.  Here are some other resources:

As of right now, we are sticking with our Early Intervention team. Lorelei is doing fantastic! We hope to start speech therapy soon and get that going. J

We would love to hear your feedback on these new pieces of information that we learned. We will continue talking and working with our doctors to get their input and thoughts.

On a side note: Lorelei does NOT have a food allergy!! J Her cheeks are just extremely dry and we have to constantly put Vaseline on them to help.

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