Mary had custody of my camera during the cruise conference, and these are most of the pictures on the camera. So, this is the cruise through Mary’s eyes. The captions are Mary’s. And yes, one is a pic of me. Click to enlarge.
The story is told of two wood-choppers who went to work in the forest. The first worked tirelessly from sunup to sundown, and felled a good number of trees. But throughout the day he grew increasingly irritated with his fellow who left for ten minutes of every hour. Even though the second spent less time swinging his axe, at the end of the day he had chopped more wood than the first.
“How is it that you get more wood chopped when you keep leaving the job?” wondered the first wood-chopper.
The second replied, “I leave to sharpen my axe.”
The recent Mission Possible: Sailing For Solutions cruise conference was an axe sharpening time for me.
There were two take-home messages for me from this conference. No, make that three.
First, Linda Kane (Hope and a Future) used pictures for the first time to speak about the last years of Scott Kane’s life. Scott was about 15 years older than Mary and I had followed his achievements closely. His story was inspirational. He didn’t begin ND until he was 10, and didn’t begin using nutritional intervention until he was 14. Yet, as a young adult his auditory digit span was 7, and he was able to ride his bike to work and do a man’s job as a janitor at an elementary school. Mary was younger, started nutritional and ND intervention earlier, and I wanted at least those achievements for her. Then Scott died in 1996, in his late 20’s.
The day I heard that Scott had died in his sleep, I wrote this.
I keep looking at Mary and thinking, What if….? I don’t know when was the last time I thought about Mary’s mortality. She is just so alive. But, so was Scott. I thought we were over the part where DS just up and kills people. I thought we were looking at 50 years at least for Mary. I’m in emotional shock.
What my mind was shouting but what I couldn’t say to Linda at the time was, WHAT HAPPENED!? And HOW DO I KEEP THAT FROM HAPPENING TO MARY?
I’m so thankful that at the cruise conference Linda risked reopening her grief and told about Scott’s last years. She showed photos of a handsome young man, short and a bit stocky. Then a year later, another photo, a bit more stocky. The next photo would have to be called overweight. And the photos progressed to a clearly overweight man in a wheelchair. Linda described Scott’s fight against weight gain, in spite of an intense regimen of weight loss dieting. She told of his decreasing energy, that he lost his job, and finally was unable to walk. Then it was all over–and he was only in his late 20’s.
Then Linda told of being given the book, Hypothyroidism Type 2, by Mark Starr. When she finally built up the courage to read the book, she realized that it described exactly what had happened to Scott in his last years, and what had finally taken his life.
Why was Linda’s story such an important part of the cruise conference for me? Because, in Linda’s photos of Scott, I saw Mary. Three years ago Mary (4’10”) was a svelte 98 pounds. Today she fights to keep her weight under 125. No matter how hard we try, her weight keeps going up and up. Could it be that Mary’s problem is not calories and eating, but that her mitochondria are not responding to the thyroid hormone that we are giving her? And is there another solution to her trajectory other than nagging her about her eating?
I’ve said in the past that “DS is not a tame disease.” You don’t get a handle on it and then coast through the next years. Nope. Trisomy 21 is constantly on the prowl and as soon as I relax my guard it finds an opening and comes roaring back in. Linda Kane, through sharing Scott’s story, gave me weapons to continue to fight for Mary.
The second take-home from the cruise conference was information gained from a reflex assessment. Three specialists with Masgutova Neurosensorimotor Reflex Integration explained the effect that non-integrated primary reflexes can have on later development. They spent an hour with Mary to assess her primary reflexes. And I learned that Mary has not integrated her Fear Paralysis Reflex. The FPR emerges in the womb and probably helps the mother deal with threats. If baby freezes, mother is not distracted and can focus on the danger. But, the reflex is supposed to integrate before or shortly after birth. If someone has not integrated that reflex, events would trigger irrational fear resulting in the muscles freezing up and the person becoming unresponsive if even for just a few seconds.
Having a non-integrated Fear Paralysis Reflex explains some of the behaviors that we see in Mary. Poor kid! Imagine living your life with events constantly triggering reflexive fear and freezing up! Knowing that it is reflexive is soooo helpful. No more trying to reason with Mary or teach her logical responses to what she perceives as threats. That would be like trying to teach her not to blink when someone throws something at her eyes. Logic isn’t going to solve it. All this would be fairly useless information except that I also came away with exercises to integrate that reflex into her mature nervous system. YAY!
The third take-home was that glutathione (GSH) is a big deal. Yes, I’ve known about glutathione, and have even spoken about it, but this little molecule kept popping up in presentation after presentation on that cruise. Glutathione plays into a good bit of the pathologies associated with DS. So, I need to revisit some recent research about GSH and its relation to DS. This will probably result in changes to Mary’s supplement protocol.
So, I stepped away from my routine for five days to attend the cruise conference. As a result, I may have found the way to step Mary off of a downward health pathway, found an explanation (and solution) for some of her inexplicable behavior, and found research relating to glutathione that can be applied to Mary’s supplements to keep her healthy.
Yes, the axe has been sharpened.
For the last month my household has been saving every piece of campaign literature that came in the mail. So we had quite a stack. Tuesday morning my daughter, Grace, sat down with Mary to read through it and decide who to vote for. Mary wrote out a list of names.
Sometimes, it is rather confusing. The farmer-guy running for county council says he knows the county best, but the other guy goes to the YMCA at the same time as daddy, so there is that personal connection. Both ladies running for county Treasurer say that they are competent and experienced, though one did accidentally leave her wallet at the McDonald’s where Mary works (!) so that is a data point to factor in. FWIW, Mary did not decide on a straight party vote, but split her vote based on some info from a pro-life voter guide.
No one in America enjoys voting as much as Mary. She hums and giggles during the entire wait in line. For the second time in her life she used her official state-issued ID card (the other time was voting in the primary) and proudly signed her name. The lady who checked her in is one of the employees at Curves, so she knows Mary and made it like a visit with friends.
The ballot was 7 electronic pages, with no opportunity to practice the turning of pages. But Mary went up with her hand written list and the poll-worker got her started then backed off. Everything went well for the first 5 pages, then page six had some races that were not on Mary’s list! Apparently no one running for school board thought it was worth while to send us campaign literature, maybe because all three were unopposed.. And there was an unopposed race for judge; that guy hadn’t sent any literature. So, Mary stood there stuck, not knowing what to do next.
So the poll lady asked if she needed help. At this point my eagle eyes and ears zeroed in! Don’t influence her vote!! The lady walked Mary though her list, and checked each page to see that Mary had correctly marked the names on her list. (She had.) Then on page 6, the lady told confirmed that none of those names were on Mary’s list and clicked to page 7. That is ok with me, because nothing Mary would have voted would have changed those races. Then, Mary confidently handled page 7, clicked FINISH, and walked away grinning and giggling.
And, finally, I threw away that stack of campaign literature.
Paul Doney has compiled a fascinating bit of research and anecdotal evidence about the role of Ginkgo Biloba in normalizing pain responses in Down syndrome.
Normal pain response is a gift. Pain tells us to remove our hand from a hot surface. It convinces us to stay off a damaged ankle so it can heal. And it alerts us to sickness so we can take corrective action. As much as we hate pain, we must realize that the absence of a normal pain response is dangerous.
Therefore, this is good news:
The main conclusion that I would TENTATIVELY draw from all of the following is that Targeted Nutritional Intervention, and in particular the supplementation with Ginkgo Biloba, MAY normalize or improve the pain tolerance of a child as well as “wake them up” from a more sedated state.
Paul details his research and evidence at Super Down Syndrome.
My friend S– posted a warning to the ES list about low iron/ferritin levels in kids who have had duodenal atresia or stenosis surgery, or Celiac and Crohn’s. I’m going to reproduce here some of that discussion for you.
I wanted to pass on some news about J– as you have been kind enough to listen to me whine about her health problems all these years. After her most recent hospitalization for severe anemia she was treated by a hematologist as well as a gastroenterologist. They put their collective “ologies” together and came up with the plan to treat the iron depletion first.
Had any doctor ever suggested treatment of iron depletion? Read on.
No one ever suggested this before….low iron, and other nutrients were considered a result of GI disease. I’ve learned the hard way how extremely important iron stores are to the well-being of the brain and the heart and general health.
And for J– treating iron depletion had dramatic results:
She had 8 IV infusions of iron over a period of 9 weeks. Her most recent labs show her hemoglobin and iron numbers to be in the normal range. She is no longer yellow (this was attributed to my feeding her too much carotene, and low iron to my not giving her enough meat). She’s no longer pasty and pale and cold. And I almost want to say she is no longer “retarded” but of course that’s not quite the case. We’ve had a pretty intense Verbal Behavior program going for the past couple of months and she is talking so much more and willing to vocalize and learning so much more quickly.
… I did some checking and apparently one of the 4 reasons given for an inability to absorb iron can be small intestinal surgery, in particular the duodenum..which results in a much smaller area of absorbable intestine. This is where most iron is absorbed. So while I’m ready to go kick some more doctor butt because absolutely noone in all these years has put this together I did want to get the word out there to any of you who’s children have had duodenal atresia or stenosis surgery as babies to be vigilant about iron levels [emphasis added].
This information that some of our kids are at particular risk for low iron is important.
I, like many of you, was volitionally brainwashed into the idea that extra iron for our kids was a bad bad thing.
S- was referring to this article on the danger of excess iron in Down syndrome.
I’m hoping you will help get the word out that low levels of iron can be equally if not more dangerous, particularly in kids who’ve had these duodenal surgeries. (Also kids with Celiac and Crohn’s).
According to Paul at Super Down Syndrome (one of my new favorite sites), the blood test to get is a ferritin reading.
Both a paediatric sleep paediatrician and a paediatric gastroenterologist that we consult with strongly recommend supplementing with iron for sleep disturbances in children IF A FERRITIN LEVEL LESS THAN 50mcg/L IS SHOWN. Note that the “normal” range is 20 – 200 mcg/L. Ferritin is the iron storage molecule of the body. In children with DS iron supplementation should only be undertaken if low iron levels are proven and they should be monitored regularly during supplementation so that the supplement can be stopped ASAP.
There is much, much more at Super Down Syndrome, including the relationship between iron deficiency and sleep disturbances.
Sara Rosenfeld-Johnson has recorded her presentation Early Intervention: Oral Placement Therapy for Children with Down Syndrome. Click the photo to begin streaming the video.
If you have a young child with DS, then do yourself and your child a favor and become familiar with SRJ’s work before you child has all the wrong habits.