Earth Angels

more fun

2008-05-14T10:48:00.001-07:00

2008-05-14T10:27:00.001-07:00

where does time go?

2008-05-14T09:18:00.001-07:00

It's spring 2008 all ready....since i've fallen off the internet ...off my blog and chat sites with people associated with the trisomy 21 group and the spina bifida moms group...sorry...Ladies...i miss of of you...i just was too busy..my "me" time except for courses was nil...I've become a Brain Gym(R) Consultant/Instructor...travelled out of town to many, many Brain Gym courses..even out of Province with my 2 lil ones and step daughter to Vancouver for a course on Dynamic and Postural Reflexes...with Svetlanna Musgatova ...all very interesting and fantastic for children with special needs, anyone in general actually!!
It's been a busy year!

Connor is doing wonderfully...his therapists...speech , ot and physio...think he's doing amazing...their words "we are blown away " by how well he can do things...at his last appt a couple weeks ..he performed like a star..he showed them all his tricks and bay signs..he even said a few words for them ..like "right there" they were impressed.

Tessa is doing well..busy too..just finished some swimming lessons..then now she's doing horse riding....and with school more swimming and they just finished gymnastics and dance...all of things Tessa loves to do.

All the rest of my gang are fine...the older girls, Sash and Meag are done school for the year and busy with their jobs and bfs. My oldest son is helping build the new hospital(he's a carpenter apprentice)..he's making a place for Meagan to work at when she's done her nursing program. Brit is working at rent a car place getting to drive some nice new cars.

Above are some recent pictures...photobucket was giving me a hard time to upload pics...so I thought ..I'd just start another account...i had too many pic I think in my other to add anymore....

christmas 2007

2008-01-10T15:44:00.001-08:00

the ball tent ...fun

2008-01-10T13:27:00.000-08:00

Catching up...halloweeen etc

2007-12-22T07:52:00.000-08:00

It's been a while...for some reason..i kept getting booted off when trying to load stuff on here...today might be a better day....if u see more it is a better day.....this slide show is Chris's surprize birthday party..it was a halloween dress up party:)

Papa's birthday

2007-09-12T13:44:00.000-07:00

we had a surprize birthday for my dad the same day as the double baptism:)

it was a busy day.....way too much cake!

Connor's birthday

2007-09-12T13:08:00.000-07:00

Connor turned 1 this summer...he had 2 paries with family and friends...lots of fun. For the second party he was sleeping....so uncle dalt stuck his hand in the cake to show he had some fun...anyway...:)

Connor and Maddisyn got Baptised.....

2007-09-12T13:03:00.000-07:00

Hilary Concert....

2007-09-12T12:29:00.000-07:00

Tessa and her friend, Jessica went to the Hilary Duff concert...they had a blast....Connor met the band in the day at the mall with me...so we snagged a picture with them. Tessa was bumming out...
The concert was fun....oh so many loud shrill screams from lil girls...glad we found ear plugss...lol.....it was much better:)

summer fun

2007-07-29T12:50:00.001-07:00

summer 07

2007-07-29T12:25:00.000-07:00

We are having a fun filled busy summer....next event...Connor's 1st birthday

Family outing....

2007-07-29T11:36:00.000-07:00

to "the Simpsons Movie".
P.S....LIsa Stole my laugh

Patricks and Amanda's Wedding

2007-07-26T10:37:00.001-07:00

Dinner out with Mary and Borris

2007-07-26T10:20:00.000-07:00

we went out for Dinner at the Mandarin while were were away....yummy!

Connor in Becky's Beautiful Creations

2007-07-26T09:34:00.000-07:00

http://www.bsbcreations.homestead.com/index.html

Tessa update

2007-07-26T09:31:00.000-07:00

Tessa had her annual clinic in Toronto early July. All went well. Her back is staying nice and straight. No bowel or bladder issues.
She's outgrown and well used her wheelchair over the past 6 years so she's getting to pick a new one..she's thinking getting it in a nice blue color.
She got fitted for new rgos'...she picked orange and yellow for her colors...they should stand out for sure
Her Hilary Duff concert was cancelled for a few months...but she's still looking forward to it in the fall.
She's keeping busy helping with her love, Connor and spending lots of time with her friends. Where is summer going? July is almost gone...I can hardly believe it!!!

Connor Update

2007-07-26T09:26:00.000-07:00

Connor recently had an assessment by a physiotherapist, an occupational therapist and a speech therapist. He is doing great! Needs to practice his crawling...and begin eating foods that crunch...that's hard when we are trying to avoid lactose and gluten because he is susceptible to celiac and diabetes:)
I found some gorilla crunch cereal to eat plain...he likes it. It does have cane sugar but it's gluten free so it's his treat. He handled eating it well!
He's saying mama all the time now...dada has been for quite awhile.
He loves the itsy bitsy spider song and patty cake. He tries to do them....I'll post a couple videos here as well.
He'll be one year old on August 3rd so Tessa and I are busy planning his party these days:)

Connor Sasha etc

2007-06-29T16:09:00.001-07:00

connor playing with his pop up toy

2007-06-29T16:03:00.000-07:00

Misc....Connor getting his naps in anywhere with anyone

2007-06-29T15:43:00.000-07:00

Tessa and swimming

2007-06-29T15:20:00.001-07:00

We recently purchased a pool for the back yard ...as you can see Tessa loves it:)
She's done school for the year and is looking forward to summer. She had a great report card a's and b's...she was quite pleased with herself...she worked really hard this year.

sweet feet

2007-06-26T07:51:00.001-07:00

shelley's grad

2007-06-26T07:48:00.000-07:00

connor and chris

2007-06-26T07:45:00.000-07:00

Cuddle time

2007-05-27T18:38:00.000-07:00

new slideshow....we love to cuddle!!

Bonnie...here;'s Austin

2007-05-27T18:26:00.000-07:00

meeting Barbara Colorosso

2007-05-27T15:20:00.001-07:00

Her books are fantastic...lots of great tips for raising respectful, responsible children

What children with special needs teach a parent....

2007-05-27T14:57:00.000-07:00

i often think about this..but often had a hard time putting into words until last night i read a book...that expressed the things that i think about....people often say ..."oh your children are so lucky to have you".....really it's the other way around..I'm so lucky to have them....they are my biggest blessings in life.

From the book..."I am the child" by C. Freeman...." I am the child....I give you opportunities ..to discover the depth of your character, not mine, the depth of your life, your commitment, your patience , your abilities, the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you would ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers. (It's true ...my children bring these things out in me)
From the child that can not walk..."My gift to you is to make you aware of your own great fortune, your healthy back and legs, your ability to do for yourself"
(true again...although i still wish with all my heart that Tessa could walk....strangely she doesn't says she likes wheelin around...hmmm...optimistic and a good attitude:)

From the child that is intellectually impaired....."If I don't learn easily you judge me by the worlds measuring stick. What I do know is infinite joy in simple things . i am not burdened as you are with the strifes and conflicts of a more complicated world".
Through this comes the gift of learning to enjoy things like a child would...helps keep one young so they say..guess i'm really putting it to the test.

My children teach me ...innocent trust, unconditional love, respect for others and their uniqueness. They teach me about the sanctity of life and how precious it truly is and not to be taken for granted. I treasure each moment with all my children and step-daughters.
They teach me about giving and for going my own needs. They teach me hope and faith.
They teach me to dream.

Catching up on life

2007-05-27T14:50:00.000-07:00

well...here I am so far behind...i think i'm ahead:)
Since, i've last posted I've been to Calgary and back...for a conference on down syndrome. Overall, it was very good..lots of good info to sort through and absorb...good tips. One of the best parts of the trip was meeting other people..in particular....Toryn,Linda and Bill....Sandy, Ed and Adam. We met up with them quite often for lunch, dinner and session and the dance. Nice people!!Adam and Toryn are wonderful, fun loving boys:)

more to follow .....

Connor's 9 months old today

2007-05-03T14:43:00.000-07:00

HAPPY BIRTHDAY CONNOR !!!!! age 9 months today....I took him to get him weighed...he
weighs a whooping 13 pounds 10 ounces....the lady said he should be about 16 pounds to triple his birth weight...which will be August 3rd.....so he has time. He's just a lil boy:)

Tessa got student of the month for April for French....she came home the other day grinning with her certificate and special student of the month book mark.

She's grinning ear to ear today because Hilary Duff is coming to our city for a concert. She loves Hilary Duff:) We'll have to get tickets for sure. I might be standing in line at 5 am...the day the tickets go on sale with baby...lol..I hope not!

here's our newest slideshow....enjoy.

Connor and his accomplishments....

2007-04-28T09:47:00.000-07:00

Connor had a busy week this past week...it started with an assessment by a speech therapist, a physiotherapist and a occupational therapist.....they watched Connor to assesss his progress...he impressed them with all that he can do. They were surprized that he does so much. He is in the range of doing everything than an average 6-9 month old child does....the only two things that he isn't doing yet....because we've focused on the steps before these 2 things are...sitting and crawling...now that he is ready those are our 2 areas of focus now...he prefers to stand and will stiffen like a board when you try to get him to sit....so we have to get his attention with toys so he doesn't realize we are making him sit. Crawling....he prefers to be held but is doing better at going for things that he wants on the blanket when surrounded with toys to entice him.

The speech therapist was happy with his progress to date...she said we are all ready doing the 2 things that she would have suggested for us...and those are the "out of the box reading" program and "signing time"...which for those that do not know is a sign language program...some days my head just rings with the songs from the videos...lol...Chris told me he woke up the other night..it was about 3 am...his head was ringing out the songs too.."it's signing time with alex and leah"...."come lets play"...lol

Tessa loves showing Connor sign language she used to know alot of it from having a good friend that used it.

The therapists were all impressed by his strength. He is very strong for a baby that started out floppy (which is what they were expecting still)...he's doing wonderfully.
They wrote down what he is taking nutritionally for his health which btw is very good....they expected him to be stuffy and mucous filled like many children with down syndrome that they see...they kept commenting on that...he takes lots of things for all different reasons...but it's working.

He likes to put out his bottom lip as you will see in a picture above to give kisses now...it's so cute!!!!

April 25th...he said "ma" in the morning and "da" when he was playing with Chris in the afternoon....he babbles a lots....funny things....lots of yeahs....ahhhs....
He loves to wrestle with tessa. He will hold his small bottles on his own...after reaching out to grab it as soon as he sees it.

He has better balance for sitting ,loves reaching for things with either hand,...small things, big things and will transfer toys from hand to hand. He throws stuff on the floor from his bumbo seat. He will hold out his arms for us to pick him up..when we say "up".

Fav things are jumping in jolly jumper , in peoples arms and swinging in his swing...he loves music, books . he will hold his books and stare at the pictures and the words. For his reading program...he stares at the words, keeps an interest in it as long as he doesn't see my face.

When his signing time video is on he stares at it intensely...as if grasping everything in his mind..the music is catchy.....

He recognizes faces of people in his family.He smiles when he sees them, especially Chris.

He wrestles with Tessa almost every morning to wake her up for school...I take him in her room...he lays on her and squirms all over until she's awake and happy.

Connor is mesmerized by his hands...he loves to look at and explore how they move.

He likes eating...if he sees someone eating food he moves his lips as if he's eating too.....he is eating beginner baby food we are not rushing alot of foods to avoid possible allergies..but we are giving him some stuff to get him used to the mechanisms involved in chewing, swallowing food and mouth movements associated with all that for speech down the road.

We are getting more fresh air these days now that it is warmer....last week we walked to dairy queen..it was hot... by the time I got there after pushing the stroller
(with wheels that work like crap...all over the place..it's awful) and pulling or pushing Tessa's wheelchair at the same time..I was exhausted....the air conditioning wasn't on in there..it was so hot....even the ice cream- a georgia mud fudge blizzard... didn't cool me down nor energize me... so I did what any lazy person would do...lol..i called meag to come get us in the van...lol.
Oh well...maybe next time,we'll make it home too:)

I volunteeered at Tessa's school to help a grade 3 class quilt so yesterday was our second attempt at it(i went the week before)...it's going pretty good considering I didn't really know how to quilt...hahaha...gotta learn something new every day.

well...back to house cleaning..i've procrastinated enough today....have a great day!!!

catch up day

2007-04-28T09:33:00.000-07:00

Today is my chance to catch up on my blog a lil....
Tessa got a student of the month award last month....here's what was said on the award.....The attribute of the month was courage...."Tessa demonstrates courage everyday. She is able to be different and doesn't let her fears get in the way of her dreams. Way to go!!"
I'm so proud of her!!!!!

Tessa loves horse riding.....she especially loves when they get to trot:)

click on the video of tessa riding her horse......

slideshow.......

2007-04-28T09:32:00.000-07:00

check out our newest lil slideshow.....

jumping fun

2007-04-28T09:30:00.001-07:00

connor loves to jump....in his jumper or on his own....check out his laughter....

Connor loves to go in his jolly jumper

2007-04-18T10:57:00.001-07:00

watch the video.....click on it...

and when his done..he's really done...zonked out sleeping:)

IF I HAD MY LIFE TO LIVE OVER - by Erma Bombeck

2007-04-16T09:26:00.001-07:00

IF I HAD MY LIFE TO LIVE OVER - by Erma Bombeck
(written after she found out she was dying from cancer).

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.
I would have burned the pink candle sculpted like a rose before it melted in storage.
I would have talked less and listened more.
I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.
I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.
I would have taken the time to listen to my grandfather ramble about his youth.
I would have shared more of the responsibility carried by my husband.
I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.
I would have sat on the lawn with my grass stains.
I would have cried and laughed less while watching television and more while watching life.
I would never have bought anything just because it was practical, wouldn't show soil, or was guaranteed to last a lifetime.
Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.

When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner."
There would have been more "I love you's" More "I'm sorry's."

But mostly, given another shot at life, I would seize every minute...look at it and really see it . live it and never give it back.
STOP SWEATING THE SMALL STUFF!!!

Don't worry about who doesn't like you, who has more, or who's doing what. Instead, let's cherish the relationships we have with those who do love us. Let's think about what God HAS blessed us with, and what we are doing each day to promote ourselves mentally, physically, emotionally. I hope you have a blessed day.

In honor of Mikey....

2007-04-11T06:23:00.000-07:00

In honor of Mikey.....On February 22nd, a sweet baby boy earned his angel wings. His name was Mikey. I met Mikey's mom through the T21 forum I belong too. I think of Mikey and his mom Danielle and their family all the time. What they went through and what they still go through on a daily basis, knowing sweet Mikey is in Heaven. Another lady, Connie posted this beautiful song and pictures of Mikey on her blog...and I've decided to add it to mine as well...in memory of Mikey and for others to see that life is so precious and each day to be treasured with your own loved ones. Tomorrow is promised to no one...sadly!:(

Dancing with the Angels by Monk & Neagle

Memories surround me
But sadness has found me
I’d do anything for more time
Never before has someone meant more
And I can’t get you out of my mind
There is so much that I don’t understand
But I know

You’re dancing with the angels
Walking in new life
You’re dancing with the angels
Heaven fills your eyes
Now that you’re dancing with the angels

You had love for your family
Love for all people
Love for the Father, and Son
Your heart will be heard
In your unspoken words
Through generations to come
There is so much that I don’t understand
But I know you’re dancing with the angels…

We’re only here for such a short time
So I’m gonna stand up
Shout out And sing Hallelujah
One day I’ll see you again

HAPPY EASTER! HAPPY SPRING! HAPPY EVERYTHING!

2007-04-08T12:01:00.000-07:00

We had a nice family get together for lots of good food on Saturday...there were about 18 of us...nice to see everyone!

The bunny made it here this morning...Connor was pretty non-chalant about it all...Tessa was excited to get a ball glove and ball..guess what she'll want to play alot:)

Lots of chocolate floating around here ...so far I've only eaten a Lisa Simpson chocloate....strange usually chocolate calls my name...it's being quiet so far...maybe that's a good thing:)
Here' some pics..mostly from today and yesterday...enjoy!
HAPPY EASTER!!!!
CLICK ON THE PICTURE BELOW TO SEE THE MONTAGE THAT I CREATED TODAY....

Spring..Easter

trip to toronto

2007-03-31T14:04:00.000-07:00

Tessa had her annual check up with the neurosurgeon this week in toronto...it went well.In fact, she can now wait a few years before going back to him unless she has any problems...so that was nice news.

We made it to our fav restaurant the mandarin....as usual it was yummy...and we filled our faces ....after leaving the restaurant...we were rear ended by another van as we went to go onto a main road...so the fun began...the police do not come to accidents like that so we had to follow the lady that hit us to the police station...luckily she knew where she was going. two hours later papers were filled out and we were on our way...to Grandma Mary's ....that made our visit to Mary's shorter than we planned :(

We got to see Grandpa Borris...he's more mobile then ever ....Connor kept staring at him...and he made strange with Grandma Mary...i think it's grey haired women that he makes the most strange with.

Connor and I both went to the chiropractor yesterday...he's perfect...I likely got whip lash and "could have a long recovery" in the words of my chiropractor....in the words of myself "that sucks".

Check out the 2 sets of photo bucket slide shows below...I just posted them today.

Have a great weekend.... Tessa is on a video clip for the Easter Seals telethon tomorrow. They filmed here last Monday....they filmed her making a salad, getting off the bus, feeding Connor, doing her hair and make up with Meagan, going up and down the ramp, showing how her bathtub lift works and filmed her drawing some fashion pictures of clothing....it was interesting although nerve racking for me...i like to be behind the camera not in front of it..I did most of the talking for it...only on a microphone instead of on camera...wringing my hands as I did at the beginning of the taping...all the liquid from my mouth went to my hands..I hate being on camera ...did I mention that?

Today I decided I'm so far behind on life ...that I just have to get at it and start finishing things that I start...so I'm off of here to finish that bag of chips and dip that I started.....hmmm...did I start a bottle of vodka....maybe I need to finish that too...lol....until i blog again....enjoy life and live it to it's fullest!!!

Sheena

trip to toronto :face making fun

2007-03-31T13:59:00.001-07:00

visit to grandma and grandpas

2007-03-31T13:58:00.001-07:00

happy st. patricks day

2007-03-16T13:28:00.000-07:00

Connor, Tessa and Meag

2007-03-09T11:03:00.001-08:00

Connor and Tessa

2007-03-09T10:45:00.001-08:00

Connor waking up...

2007-03-09T10:41:00.000-08:00

This is Connor waking up..it's a lil dark at first but I do get some light in ....listen to what he does...he sucks in the air instead of crying when he wakes up....

Connor reading

2007-03-09T09:16:00.000-08:00

this is Connor doing his reading program....I'm multi tasking here....helping him with the reading program and camcording....
watch how he looks at me often..but still the words catch his interest...he really likes this program.

New pictures...plus the last few are oldies I love:)

2007-03-07T15:35:00.001-08:00

notice Tessa has a tatoo...(fake) on her arm...i never noticed it the day of the photos...she commented oh well it kinda matches Connors shirt

Connor meets his Doctor

2007-03-02T10:42:00.001-08:00

Connor's pediatrician cancelled again from March 5 th to May 31st. So, I decided that was crazy for him to not see a specialist since being diagnosed with trisomy 21 last November... He was born last August and hasn't seen a pediatrician ...I called another pediatrician last week and got him in for yesterday. So Connor finally got a good check up. I am relived and little less stressed knowing he seems to be fine. I got a copy of his his echocardiogram that he had about 1 month ago after my insistance again. I got a copy of his tests at birth...wow do they ever test them for lots these days -over 17 things...not that I understand everything that they test for...but it was interesting...those tests are for any child born here...the trisomy test wasn't done until age 4 months.I also, got a copy of his confirmation of having trisomy 21.

It was a good appt...now I can keep his records in one place to have easy access to any info in the future. They are going to send me his hospital record too.....other than him being born and waking me up every for hours for food and diapers changes it seemed like he didn't exist...on paper any way:)

His eyes/vision- fine. His ears/hearing - good. He weighs a whopping 12 1/2 pounds...25 inches long....the Dr said he was small but in porportion head, length and body were all ok... so that is good. My other kids were small too.

The Dr. and I had discussions about vaccines and reasons why we are not doing them at this time.He tried to gently arm twist me ...and I left agreeing that if I changed my mind he'd take me on a short notice..I said "an hour"...he said "a half hour" and smiled. I'm happy that appointment finally happened... Connor will be 7 months old tommorrow. ...March the 3rd.

Connor gets real food...yummy

2007-02-27T16:22:00.000-08:00

Connor has his first real food last week..he tried organic sweet potatoes ...he seemed to like them.He had them again yesterday. Meagan and Tessa took turns feeding him them......

Hair Brushing....

2007-02-27T16:16:00.000-08:00

Connor attempted to brush his own hair a couple days ago...i just handed him the hair brush...he put it straight to his head...seemed like he was really knowing what he was doing....he got mad though when he hit it on his head too hard...hard brushing lesson 101 was shortened after that:)

Raising Krystal

2007-02-27T16:15:00.000-08:00

A heart warming story....
http://www.dsat.ca/quicklinks/Raising%20Krystal.pdf

reading time

2007-02-26T11:23:00.001-08:00

Connor loves story books.....

2007-02-26T11:21:00.002-08:00

2007-02-26T11:21:00.001-08:00

Connor was a star

2007-02-26T10:01:00.000-08:00

Connor's new infant development worker came by for a visit last week...and Connor was a star. He really performed...he rolled from front to back and back to front,reached out to grab at toys, put his hands on his bottle,grasped his fingers, chewed on his hand, vocalized out loud ...to show off his good singing voice. He showed her how hardly he can laugh and he stood weight bearing on his legs. He even showed her how well he can squirm...lol..he likes to squirm and wiggle around...gotta hold him tight now!:)

He's really enjoying his toys these days...grabbing at them, playing with them.He loves story books and loves to cuddle. Since he started a new nutrition program he's developed more focus and pays more attention to people and what they are doing around him. He gaining more and more strength each day. He is amazing!!!He has the cutest lil smile....

Nutrition and trisomy 21 - article

2007-02-19T10:13:00.000-08:00

People in general need many vitamins, minerals and antioxidants....proper carbs, good fats, good protein sources, fiber and pure water.

So when it comes to our children... I will say I know we can't "cure" them ...but I believe they can with the right stuff,,,they can be the best they can be....and have better immune systems.

Prior to Connor, I have taken 2 courses -to become a CNC and a RHN...plus I have read over 300 books and own them so the value of nutrition is not a question to me...if like long ago our foods contained what they used to it would be ok...but they don't and each year they have less and less nutrients in them.sadly:(

Since having Connor I have buried my brain into books and websites on nutrition with regards to things our children with trisomy 21 are very susceptible to ....this following article is one of the best, easiest to understand articles with references that i found.....so after reading it and many other things....i went through what other supplements have in them ...what our kids seem to need and whats in the Nutrivene d....products...seems like a great match for me...for Connor....I started him on them last week and all ready notice a difference with regards to his attention and focus so I'm happy so far. I also, took him to a naturalpath before starting him on the supplements to test via a computer system (therefore pain free) all areas of his body...thyroid, endocrine, allergies, food sensitivities, etc, etc...heart even..not to my surprize he was all ready showing weaknesses in all the areas our kids seem to be susceptible in...so now I'll keep him on these products and a few other things ...then test him again in a few months and see ....I'm confident knowing what i know that this will be of benefit to him.
~~~~~~~~~~~~~~~~~~~~~~~~
Here's an article I found....about nutrition...
Down's Syndrome: Inevitable mental disorder or treatable metabolic disorder?

Down syndrome is the commonest cause of mental retardation and it affects many families. I am sure that most people will know someone with Down syndrome. For many years it has been regarded as a syndrome in which mental retardation and poor health is inevitable. However, this need not necessarily be so I would like to present two cases to illustrate .
Danny
My first case concerns a young man called Danny. He is a 28 year old man who presented moderately retarded,
with limited speech and single word- or two-word sentences. He did not use any prepositions. He lived in a sheltered home facilities and worked in a sheltered workshop. We deal with a lot of behavioural and learning difficulties in our clinic, and it was on this basis that he was brought in to see me. He was very agitated and was inclined to be violent; he would kick and bite. He was also very aggressive and confrontational and he had crying fits and would sob. He had been on traditional medications such as Melleril, a henothiazine used in psychotic disorders and a very sedative drug, and on Valium another tranquilliser. He did not appear to have much benefit from these drugs.
He also suffered from sleep disturbances. He had to perform night-time rituals and they had to be done in the right order. Unless these were done, he would not go to bed. Consequently, he did not get to bed until at least 11:30 pm and sometimes 3:30 am. Thus he had variable waking times in the morning. He had also self-comforting rituals, often observed among disturbed children, such as rocking behaviours or swinging from side to side. He simply could not sit still.

Jo
The other case was a young man called Jo. He was a 25 year old and was born looking apparently normal. However, he had
gradually developed widely spaced teeth, flat feet, a small head and he vomited a lot as a baby. No doubt this was due to food sensitivities. He became developmentally delayed and later was profoundly mentally-retarded with a low IQ. He had uncontrollable tempers, he was hyperkinetic, restless, over-active and he too rocked a lot as self-comforting behaviour. He had occasional seizures. He was found to have an abnormal EEG (electroencephalogram) and other neurological
abnormalities.

Danny’s treatment
I treated Danny as I tend to treat many behaviourally disordered patients, given that we were dealing with a 28 year old man, who went out and was uncontrollable in terms of diet and nutrition when out. As far as possible we eliminated sugars,
preservatives and colours from his foods. We steered him onto whole foods, again as far as possible. There
are certain nutrients that are indicated in children with behaviour disorders. It would be difficult to mention them all as these apply to individuals with what Roger Williams would call “biochemical individuality”. Among these are vitamin B6 (pyridoxine), magnesium, zinc, and certain amino acids, particularly phenylalanine, glutamine and adenosine. I also use tissue salts and homoeopathic remedies (Bach flowers and strammonium & veratrum), aroma therapy oils, such as lavender oil, and herbs passion flower, hops and valerian to sleep. We also introduced, wherever possible, behavioural interventions in the
home situation. Over a 12 months period he gradually improved, although I did not then see him for a space
of 8 months. He re-appeared, this time with his mother and carer, in my surgery. She told me that he had now
no agitation, he was now calm and controlled. There was no shouting, fighting, or violence. He had ceased to be aggressive or
confrontational. There were no crying fits and other symptoms of what we call being ‘emotionally labile’.
His sleeping pattern improved. The next bit of information surprised me. Danny was seeing his older brother, whom he had not seen for some 18 months, and after a while his brother said to his mother: “Mum, what have you done? He is
different.” In addition, his vocabulary had increased and he had begun using prepositions So here we have a
man who had been operating at an intellectual level far below his potential for many years, who now had
learned to speak. Yet, he had not received remedial teaching. He was using prepositions that he had never
used before. He was communicating better and his function in his workplace improved and he was moved to a new position. I had not expected this to happen. I was rather excited to see the effects of a change in nutrition. Unfortunately, I
had not done a earlier EEG to compare the results, but I was convinced that his learning and brain functions
had improved.
Danny was a typical Down’s Syndrome case. Jo was a slightly different case. Jo’s treatment was a very
simple nutritional intervention, removing a single amino acid from his diet; phenylalanine. Jo was what
is called a phenylketonuric. A Guthrie test 1 at birth now detects phenylketonuria (PKU). This is
an inborn metabolic disorder caused by the absence or a deficiency of the enzyme, phenylalanine hydroxylase,
responsible for the conversion of phenylalanine (an amino acid) into tyrosine 2 . It is an autosomal genetic disorder. People can be carriers and only partially be affected. The incidence is 1 in 10-20,000 and fortunately is rarely seen in adults now. Accumulation of phenylalanine is toxic to the brain tissue. If undetected at birth the patient may among other
symptoms become mentally retarded. Treatment consists of a diet low in phenylalanine. It is important to
realise that PKU inhibits pathways of an important neurotransmitter, serotonin, and this affects behaviour and moods. It also interferes with the Gamma-aminobutyric acid (GABA) pathway. This amino acid has a neurotransmitter-like activity, is found in the brain (and other organs) and keeps a person calm. It is an inhibitory chemical substance which, if it is disturbed, will result in problems with aggression. It is important that phenylketonuria be detected at or near birth, for if left untreated loss of 5 IQ points for every 10 weeks delay in diagnosis will result in mental retardation. Little benefits from treatment may be expected after 3 years of age.
Phenylketonuria and Down’s syndrome therefore have similarity in that nutritional intervention can influence brain function.
Down’s syndrome Down’s syndrome is the commonest single cause of mental retardation, and is caused by complete or partial excess of chromosome 21 (trisomy 21). In 89-90 per cent of cases this is caused by nondysjunction, where chromosomes don’t separate properly during cell division. One cell line has 47 chromosomes (instead of
46), and this line replicates; the other, 45 chromosomes, and this cell line dies.
Rarely, Down’s syndrome may be inherited (6%) or resulting from nondysjunction later in cell division (Mosaicism - about 2%). There are quite a few predisposing factors for this to occur.
The incidence of Down’s syndrome increases with maternal age; that is the older the woman giving birth the greater the incidence. One in 600 births give rise to Down’s syndrome in women below the age of 30. The incidence increases to one in 40 births by women above 45 years of age. Recent research suggests that this is possibly due to oxidant damage to the ovaries, causing nondysjunction. Studies show that mothers who are 35 years old or younger at the time when they give birth to a Down syndrome child have five times the risk of developing dementia themselves. This indicates
increased oxidative damage in the body, as the link between oxidative damage and dementia is becoming increasingly apparent. It is interesting to note that antioxidant treatment has a well-established role in the prevention of dementia. Other risk factors include;
• infection prior to conception
• abdominal X-rays prior to conception
• OC (contraceptive pill) use within three months of conception
• coeliac disease in either parent
• diabetes; thyroid disease; Chronic fatigue syndrome;SLE in either parent
Many of these risk factors could also be operating via oxidative damage to the ovaries.

Genetic defects
A chromosome is a package of a multiple genes.
Chromosome 21 provides a genetic blueprint for various proteins, enzymes and other metabolic substances. Therefore, a duplication of this chromosome as in Down syndrome will result in the disturbance of numerous metabolic pathways, and an excess of some gene products.

In phenylketonuria, in comparison, there is a lack of a single enzyme which results in the disturbance in one pathway in particular, and so a single corrective factor is adequate.

Superoxide dismutase enzyme (SOD)

Chromosome 21 encodes for several enzymes as now known. Perhaps the most important of these is the copper-zinc dependent enzyme Superoxide Dismutase enzyme (SOD).
This enzyme functions in the body to protect cells from harmful singlet oxygen and hydroxyl radicals 3, which are produced during normal cellular metabolism. Under the influence of the enzyme, the hydroxyl radicals and singlet oxygen 4 are converted to hydrogen peroxide, a very reactive chemical. Under normal circumstances, the selenium-dependent enzyme, glutathione peroxidase, neutralises the hydrogen peroxide. However, in Down syndrome, there is an excess of SOD production and
thus an excess production of hydrogen peroxide and a deficiency of zinc.
The body tries to compensate for this by increasing the production of glutathione peoxidase with resultant deficiencies of glutathione and selenium. This imbalance in hydrogen peroxide, glutathione, selenium and zinc, may well be the
mechanism behind the oxidative damage and early aging and increased presenile dementia seen in Down’s syndrome.

Purine metabolism
Also encoded for on chromosome 21 are enzymes necessary for correct function of the purine metabolismpathway. Purines 5 are the nitrogenous end products in the digestion of certain proteins. An inability to metabolize and excrete purines may develop into gout. There is evidence that among Down’s syndrome patients there is an increased incidence of gout, which can then be treated by avoiding foods containing high levels of purines and encouraging a purine-free diet, and increasing levels of folic acid to inhibit excess synthesis of uric acid.

Interferon
Chromosome 21 also encodes for the alpha/betainterferon receptor.
Interferon is a natural cellular protein formed when cells are exposed to a virus. It induces the production of ‘translation inhibitory protein’ (TIP) in noninfected cells. TIP blocks translation of viral RNA, thus giving other cells protection against both the original and other viruses. Interferon is species specific meaning that interferon produced in one species of animals cannot
be used by others. It has been trialled in the treatment of such diseases as hepatitis and also in cancer. Interferon is an important component of the immune system. The genetic blueprint in Chromosome 21 for the receptor is found to be disturbed in cases of Down syndrome.
Receptor sites for interferon on leucocytes may interfere with maturation and lead to failure in immunological development. Down’s syndrome is recognised as having chronic and recurrent illness, and having 10 times the occurrence of leukaemia compared to the general population.

Amino acid metabolism
Another important enzyme which it has been discovered is encoded for in chromosome 21 is an enzyme involved in amino acid metabolism. Amino acids are the building blocks of proteins and hence affect the manufacture of various enzymes. The particular enzyme is Cystathionine beta synthetase(CBS), responsible for the production of
cysteine as follows:
(Homocysteine + Serine) —> Cystathionine
—>[CBS]—> Cysteine
+ alpha-
ketobutyrate
Cysteine is a nonessential amino acid, but nutritionally important since it spares the essential amino acid methionine

Cysteine is also important in that it is the precursor of taurine in the formation of coenzyme A from the vitamin pantothenic acid (B5). The result of this disturbance in CBS is that there is an increase in certain amino acids and a decrease in others. This has been confirmed in studies with Down’s syndrome, in which it has been found, that there are deficiencies in serine, methionine and taurine.

Physical characteristics of Down’s Syndrome
Characteristics are not always shown at birth as maternal metabolism tends to compensate. Typically they have slow growth, they are short with a small head and have dry skin. They show an abnormal face, with a flat back of the head (flat
occiput) and usually they have slit eyes (epicanthic folds), pinpoint, white or light yellow spots on the iris of the eye (Brushfields spots). They may show middle ear abnormalities and abnormal skin formation around the fingers often indicative of chromosomal anomalies (abnormal dermatoglyphics). They may also display abnormal dental growth.

Patterns of dysfunction Down syndrome patients are typically retarded with an average IQ of about 55 untreated.
Fortunately, this can be improved upon through nutrition and intensive learning and socialisation programmes.
Thyroid dysfunction is quite common among Down syndrome patients. There is a marked dysfunction of the immune system, and so they suffer recurrent illnesses. As mentioned, studies show that individuals with Down’s syndrome have ten times
the incidence of leukaemia.

Significantly, they have severe gut dysfunction, marked by frequent constipation.
They often lack the necessary digestive enzymes to absorb their food. They invariable have a lactose intolerance. They are typically emotionally labile, meaning they suffer from mood swings from extreme joy to friendliness, stubbornness
and aggression.

They have an increased incidence of diabetes. Down’s syndrome patients usually show signs of presenile dementia or Alzheimer’s disease, typically in their 40’s. Other signs of a metabolic disorders are increased incidence of gout
and hyperuricaemia or presence of high levels of uric acid in blood.

Other biochemical disturbances currently known As pointed out chromosome 21 encodes for various enzymes and amino acids, many of which are defective in Down syndrome. • The same chromosome 21 controls the behaviour of various amino acids, the building blocks of protein. Often we find a disturbance in the glutamine/glutamate pathways. Although these amino acids are normally produced in the body, in Down’s
syndrome patients they may be dysfunctional. Glutamate and glutamine are intimately involved in brain processes by converting toxic ammonia into harmless substances via the urea cycle to be excreted in the urine. By supplementing Down syndrome patients with glutamine or glutamic acid we may be able to supply the brain with energy and improve intellectual capacity.
• Similarly, a disturbance in the tryptophan metabolism may cause a decrease in available serotonin, an important neurotrans mitter affecting a person’s emotions.
• It is known that Down’s syndrome patients are low in insulin growth factor no 1 (IGF1). It is responsible for making growth hormones. During baby-hood the equivalent is insulin growth factor 2 (IGF2) which should become IGF1 in adulthood. The enzymes involved are zinc dependent and zinc supplementation has been shown in studies to normalise IGF1.
• Disturbance in the carbohydrate metabolism contributes to an increased incidence of diabetes among persons with Down’s syndrome.
• Closely related to this is a reduced levels of pyridoxine (B6) which affect protein, carbohydrate metabolism and production of serotonin from tryptophan.
• Vitamin B12 is found to be generally deficient, which may be due to problems of absorption involving absence of the intrinsic factor from the stomach, pH levels in the gut, or interference by other medical drugs.
Vitamin B12 and folic acid are essential in heme production, which form part of red blood cells. B12 is essential in the correct production of DNA, without which cells cannot mature.
• Digestive enzyme deficiencies are common among Down syndrome patients and this results in general malabsorption of nutrients. Of particular importance is lactose intolerance so milk products should be avoided. Antibodies have been
found to bile ducts (75%), parietal cells (62%), and smooth muscles.
• It is common to find thyroid dysfunction among Down syndrome patients. They usually have a small thyroid gland. Again auto antibodies are found to the thyroid. The consequence is that they under-produce thyroxine (T4), an important hor-
mone involved with the rate of metabolism, that will affect many bodily parameters such as temperature, metabolic rate, growth hormones, skeletal maturation, regulation of fat, protein and carbohydrate metabolism, synthesis of enzymes,
muscle tone. This explains why the skin tends to be dry, why they have a lot of constipation and problems with weight. It is interesting to note that among others thyroxine also stimulates the conversion of beta-carotene to vitamin A in the liver.
11 Zinc has been shown to normalise thyroid stimulating hormone (TSH) and T3 levels of thyroid function. • Vitamin B1 thiamine has been found to be particularly low. This vitamin is necessary for correct carbohydrate metabolism and for
nerve function.

Interhemispheric communication in the brain
Studies show that Down’s syndrome patients have a disturbance in their brain function, particularly in communication between one side of the brain and the other. This is something that is treatable. Patients seem to have a particular sensitivity to a drug called atropine (used for relaxing smooth muscles in the intestines and
other organs). This drug has the effect of blocking receptor sites for acetylcholine,a neurotransmitter mediating synaptic activity of the nervous system and muscles .
This disturbance of acetylcholine in the brain is of great interest.
As indicated earlier Down’s syndrome patients are prone to develop dementia. It has been found that they have difficulties binding aluminium, which has been implicated in the development of dementia. A study has shown a defective
gallium-transferrin binding in the brains of Down syndrome patients with Alzheimer’s disease. In Alzheimer’s patients this mechanism is thought to be involved in the accumulation of aluminium.

Management
It is important to realize that treating a Down syndrome child is treating a whole person, and not simply “pill taking”. We have to look at the social side of the illness, family support and behavioural management. There is a need for boundaries
of acceptable behaviour and discipline.
Specific features which need to be attended to are:
• Eyes/vision problems should be looked at by a developmental optometrist. 50 per- cent of Down’s syndrome children have eye and vision problems in the form of refractive errors, cataracts, keratoconus (noninflammatory protrusion of the
central part of the cornea), amblyopia (defective vision, approaching blindness, usually as a result of strabismus or the inability of both eyes to focus on the same object). They may need spectacles or to do eye exercises.
• Heart condition, which are usually picked up at birth. 30-60 percent of Down’s syndrome children have some form of cardiac condition.
• Together with structural abnormalities in the face, ears and hearing impairment is common. 65 percent of Down syndrome children have conductive hearing loss. It is important to correct hearing losses if we are dealing with learning disabilities and/or speech impediments.
• Orthopaedic problems are very common because of lax ligaments and poor muscle
tone. 10-20 percent of Down’s syndrome children have what is called an atlanto-axial instability, involving the atlas and axis of the vertebral column, and affecting the whole spinal part of the body, and related to this
• a lot can be done by regular exercise regimes promoting coordination, muscle tone and stimulation.

Nutrition
It goes without saying that we have to provide nutritional support to various parts of the body, to the thyroid gland, the digestive system, carbohydrate metabolism and so on. The earlier this regime is started the more beneficial it will be to
the child. If the condition is diagnosed early enough, the child does not need to develop Down’s syndrome, or does not have to develop mental retardation and an abnormal face. Treatment should include:
• Exclusion diets: diets should exclude food sensitivities which could be detected by a cytotoxic food testing, diets should exclude gluten in the case of coeliac disease, or milk products to avoid lactose intolerance, and
sugar, artificial colourings, flavours and preservatives.
• avoid aluminium cooking utensils
• Add green leafy vegetables, olive cooking oil, flaxseed oil on salad and vegetables, ginger, onion and garlic.
• Vitamin/mineral support is essential to maintain a proper carbohydrate metabolism. The B-complex vitamins and the minerals magnesium and chromium are an integral part of treatment.
Specific vitamins and minerals include:
1) Pyridoxine (B6) involved in protein metabolism and tryptophan conversion to serotonin,
2) folic acid for its methylation action together with vitamin B12, necessary for DNA synthesis,
3) zinc, a co-enzyme in many enzymatic processes in the body, important to the immune system, and to correct insulin factor-1 (IGF-1) abnormality.
• Thyroid support includes the checking of function ofthe thyroid gland at 6 monthly intervals. The diet should be supplemented with kelp, for its iodine source, and tyrosine and where necessary thyroxine. Adequate zinc levels are necessary.
• Amino acid correction can be implemented after a urinary amino acid profile.
The important amino acids supplements should include serine, methionine, glutamine/glutamate, tryptophan, taurine, tyrosine and others as indicated.

Studies have shown that a serotonin enhancing diet can decrease aggression by 95 per- cent.

Recent studies have shown that supplementation with L-carnitine produced significant improvement in mental status in Down syndrome patients, but not other categories of mental patients. 12
• Phosphatidyl- choline plus vitamin B5 will help the interspheric imbalance in the brain and promote neural transmission.
Lecithin is rich in choline and so is choline bitartrate obtainable in health food stores. Additionally, choline supplementation will improve sleeping abnormalities.
• Supplementation of antioxidantssuch as vitamins A, C, E, Beta-carotene and including minerals zinc, copper, manganese, selenium, glutathione (essential in the superoxide dismutase). This is to protect against the oxidant damage and im-
balance caused by the excess SOD enzyme and consequent deficiencies of zinc, selenium and glutathione.

Conclusion
A Californian paediatrician, Dr Jack Warner, has treated over 700 Down syndrome children in “the Warner House” following the principles outlined in this article.
They employed a team of experts in their fields such as a physical therapist, developmental optometrist and behavioural therapist and with their combined approach were able to produce Down syndrome children, able to attend normal schools.
This, of course, depended on the age at which children commenced treatment. Early treatment resulted in Down syndrome children having growth rates equivalent to normal, with an IQ in the normal range, general reduction in chronic illnesses and significantly, normalisation of facial features. There is a record of one child, age 5, obtaining an IQ score of 140!
Down syndrome stems from chromosomal defects resulting in abnormal cellular biochemistry. Some of these effects, at least, are reversible, others are preventable and others can be moderated.
Therefore, Down syndrome does not mean inevitable mental retardation: it is a metabolic disorder that can be treated to an extent that patients can function normally in society.

Clinical nutrition provides, indeed, a ray of hope!
Footnotes
1) In a Guthrie test a small amount of blood is obtained and placed in a medium with a strain of Bacillus subtilis, a bacterium that cannot grow without phenylalanine. It is a screening test for phenylketonuria used to detect the abnormal presence of phenylalanine metabolites in the blood.
2) Tyrosine is a forerunner of thyroxine, a hormone excreted by the thyroid gland which among other controls the metabolic rate.
3) Hydroxyl radicals - a particular reactive, damaging type of free radical, formed when superoxide radicals react with hydrogen peroxide. They are thought to be the damaging agent to joint membranes in arthritis.
4) Singlet oxygen is an activated energetic reactive form of oxygen which can damage important macromolecules such as DNA
5) Purines are also present in many medications and other substances such as caffeine, theophylline (an
alkaloid found in tea and related to caffeine, also used in some bronchodilators), diuretics and muscle relaxants. Foods high in purines are anchovies and sardines, sweetbread, liver, kidneys and other organ meats, legumes and poulrtry. Foods lowest in purine includes eggs, fruits, cheese, nuts, sugar, gelatin and vegetable other than legumes.

6) Formed from methionine, cysteine is easily transformed into usable cystine, together with methionine are major sulphur containing amino acids. It is a component of the glucose tolerance factor (with glycine, glutamic acid, niacin and chromium).
Cystine or cysteine are essential for utilization of B6.
Production of cysteine from methionine is prevented in chronic disease. Protects against effects of alcohol and smoking. Involved in hair strength. Involved in insulin production. Flexibility of skin through attack on free radicals.
7) Stryer,L(1988), Biochemistry,WH Freeman & Co NY,page 584

8) Methionine: An essential amino acid which among others control the overload of fat in your liver. Methionine’s sulphur content helps the liver to manufacture lecithin, a valuable fat-fighting substance. Methionine acts as an antioxidant, deactivating free radicals. It also ‘chelate’ or grab hold of metallic substances and heavy metals (lead, mercury & cadmium) that might otherwise cause toxicity. It is a methyl donator in B12 metabolism. Gives rise to taurine and cysteine and cystine. Detoxifies excess histamine (important in histadelic schizophrenia). Essential for selenium
bioavailability, an essential co-enzyme in glutathione peroxidase, which attacks free radicals.
9) Synthesised from methionine (or cysteine in liver), taurine helps to nourish brain cells. It works with choline to maintain neurotransmitters that promote thinking. It is often used as an addition in the treatment of epilepsy. Inhibited by estriadol. Helps overcome obstruction in the flow of bile (cholestasis). Taurine in serum rises with low zinc serum , and
results in low taurine levels in the brain,thereby increasing the chances of ‘fits’.

10) Serine - A nonessential amino acid (meaning the body can synthesise it) found in many proteins in the
body. It is also the precursor of glycine, which in turn is involved with porphyrins and heme proteins.

11) Nutrition Search Inc (1979), Nutrition almanac, 14

12) Carnitine is synthesised in the liver from lysine and methionine, vitamin C being essential for its conversion. Has a major role in transferring fatty acids into cells where they are used as energy sources.

By Dr Robyn Cosford The Hypoglycemic Health Association vol 12 number sept 1996

THE HYPOGLYCEMIC HEALTH ASSOCIATION, P.O. BOX 8,
SYLVANIA SOUTHGATE, N.S.W. 2224

Page 7
The Hypoglycemic Health Newsletter
- 7 -
September, 1996 Vol. 12, No. 3

Further reading on Down’s Syndrome by Dr R Cosford:
1) Abalan F et al., A study of digestive absorption in four cases of Down’s syndrome, Med Hypothesis (UK)
31(1): 35-38, 1990
2) Airaksinen EM, Tryptophan treatment of infants with Down’s syndrome, Ann Clin Res 6(1); 33-9; Feb 1994
3) Anneren G et al., Growth retardation in Down’s syndrome in relation to insulin-like growth factors
and growth hormone, Am J Med Genet (suppl): 59-62, 1990
4) Antila E et al., Selenium therapy in Down’s syndroem (DS): a theory and a clinical trial, Adv Exp
Med Biol, 264: 183-6, 1990
5) Bennett FC et al., Vitamin and mineral supplementation in Down’s syndrome, Paediatrics 72(5),
707-13, Nov 1983
6) Bidder RT et al., The effects of multivitamins and minerals on children with Down’s syndrome, Dev Med
Child Neurol 31(4): 532- 7, Aug 1989
7) Brugge KL et al., The role of alterations in free radical metabolism in mediating cognitive impairment
in Down’s syndrome, EXS: 1992;62: 190-8
8) Cantor DS et al., A report on phosphatidylcholine therapy in a Down’s Syndrome child, Psychol Rep 58(1): 207- 17, Feb 1986
9) Chiricob M et al., Enhanced DNA repair in lymphocytes of Down’s Syndrome patients: the influence
of zinc nutritional supplementation, Mutant Res On aging Genet Instab Aging (Netherlands) 295(3):
105-111, 1993
10) Coleman M et al., A double blind study of vitamin B6 in Down’s Syndrome infants, Part 1(197) Clinical
and biochemical results, J Ment Defic Res 29(Pt3): 233-40, Sep 1985
11) Editorial: Tryptophan and serotonin in Down’s Syndrome, Lancet 2(7896): 1554, 28 Dec 1974
12) Farrar et al., Defective gallium - transferrin binding in Alzheimer’s disease and Down’s syndrome:
possible mechanism for accumulation of aluminium in brain, Lancet 1990: Mar 31; 335(8692): 747-50
13) Gedye A, Serotonergic treatment for aggression in a Down’s syndrome adult showing signs of Alzheimer’s
disease, J Ment Defic Res 1991: June: 35(Pt3): 247-58
14) Grener Y et al., Molecular structure and expression of the gene locus on chromosome 21 encoding the Cu/Zn superoxide dismutase and its relevance to Down’s Syndrome, Ann NY Acad Sci 450: 133-56, 1985
15) Hestnes A et al., Cystathionuria in Down’s Syndrome, J Ment Defic Res 33(Pt 3); 261- 5, June 1989
16) Justice PM et al., Micronutrients status of children with Down’s Syndrome: A comparative study of the effects of megadoses of vitamins with minerals or placebo, Nutr Res (USA) 8(11): 1251-58, 1988
17) Kleijnen J et al., Niacin and vitamin B6 in mental functioning: A review of controlled trials in humans, Biolog Psychiatry (USA) 29(9): 931-41, 1991
18) La Perchia P, Behavioural disorders, learning disabilities and megavitamin therapy, Adolescence Fall
22 (87): 729-38, 1987
19) Lejeune J, Pathogenesis of metal impairment in trisomy 21, Ann Gent 1991; 34(2): 55-64
20) Lejeune J et al., Homocysteine and methotrexate toxicity in trisomy 21, Cancer -
Chemotherapy - Pharmacology 1991; 27(4): 331-2
21) Lejeune, J et al., Amino acids and trisomy 21, Ann Genet 1992: 35(1): 8-13
22) Licastro F, Zinc affects the metabolism of thyroid hormones in children with Down’s syndrome:
normalisation of thyroid stimulating hormone and reversal of tri-iodothyronine plasmic levels by
dietary zinc, Int J Neurose, 1992 Jul-Aug; 65(1-4): 259-68
23) Lockitch G et al., Infection and immunity in Down’s Syndrome: a trial of long term low oral doses
of zinc, J Paediatr 114(5): 781-7, May 1981, Comment in: J Paediatr 116(3): 487-8; Nov 1990
24) Menolascino FJ et al., Vitamin supplements and purported learning enhancement in mentally retarded
children, J Nutr Sci Vitaminol (Tokyo) 35(3): 181-92, June 1989
25) Napolitano G et al., Growth delay in Down’s Syndrome and zinc sulphate supplementation, Ann J Med
Genet 7 (Suppl): 63-5, 1990
26) Napolitano G et al., Is zinc deficiency a cause of subclinical hypothyroidism in Down’s Syndrome?, Ann
Genet (France) 33(1): 9-15, 1990
27) Neve J et al., Selenium and glutathione peroxidase in plasma and erythrocytes of Down’s Syndrome (trisomy 21) patients, J Ment Defic Res (England) 28(4): 261-268, 1984
28) Palmer S, Influence of vitamin A nutriture on the triamine response: findings in children with Down’s
Syndrome,
29) Peeters MA et al., Excessive glutamine sensitivity in Alzheimer’s disease and Down’s syndrome
lymphocytes, J Neur Sci 1995 Nov: 133(1-2): 31-41
30) Peeters MA et al., In vivo folic acid supplementation partially corrects in vitro methotrexate toxicity in patients with Down’s syndrome, Br J Haematol 1995, Mar; 89(3):678-80
31) Peeters MA et al., Metabolic anomalies in trisomy 21: a method for analysing lymphocyte cultures, Bull Acad Natl Med 1994 Nov; 178(8); 1521-32
32) Peeters, MA et al., Differences in purine metabolism in patients with Down’s syndrome, J Intell Disab Res 1993 Dec; 37(Pt 6): 491-505
33) Pueschel SM et al., 5-hydroxy tryptophan and pyridoxine, their effects in young children with
Down’s Syndrome, Ann J Dis Child 134(9): 838-44, Sep 1980

If you got all the way through this copy , paste and print it out...compare it to what you are currently giving your child...see if he/she is getting all that is suggested as being beneficial if not essential.
I hope this helps you with your search for answers...Good Luck...what a challenge...so I'm finding. Good thing I like a good challenge.

she said ...i said

2007-02-09T10:57:00.000-08:00

This is the conversation that I had with Tessa a lil while ago..she's home again...still fevered...and vomiting

i said to her "i gotta get some sit ups in today.
she said "how many? "
i said "10 or 20"
she said "you'll be lucky if u get 1 in"
i said "why"
she said ..."because i'll be barfing"...
then she says "you thought i was going to say because you're too weak eh?"
lol brat! good thing i love her so much!!!

Why God made moms

2007-02-08T09:48:00.000-08:00

Why God made Moms - BRILLIANT answers given by 2nd grade school children
to the following questions. I don't know who put this together but My friend "Marko" sent it to me...I think Tessa told him all the answers...lmao

Why did God make mothers?
1. She's the only one who knows where the scotch tape is.
2. Mostly to clean the house.
3. To help us out of there when we were getting born.

How did God make mothers?
1. He used dirt, just like for the rest of us.
2. Magic plus super powers and a lot of stirring
3. God made my Mom just the same like he made me. He Just used bigger parts.

What ingredients are mothers made of?
1.God makes mothers out of clouds and angel hair and everything nice in the world and one dab of mean.
2. They had to get their start from men's bones. Then they mostly use string, I think.

Why did God give you Your mother & not some other mom?
1. We're related
2. God knew she likes me a lot more than other people's moms like me.

What kind of little girl was your mom?
1. My mom has always been my mom and none of that other stuff.
2. I don't know because I wasn't there, but my guess would be pretty bossy.
3. They say she used to be nice.

What did mom need to know about dad before she married him?
1. His last name.
2. She had to know his background. Like is he a crook? Does he get drunk on beer?
3. Does he make at least $800 a year? Did he say NO to drugs and YES to chores?

Why did your mom marry your dad?
1. My dad makes the best spaghetti in the world. And my Mom eats a lot.
2. She got too old to do anything else with him.
3. My grandma says that Mom didn't have her thinking cap on.

Who's the boss at your house?
1. Mom doesn't want to be boss, but she has to because dad's such a goof ball.
2. Mom. You can tell by room inspection. She sees the stuff under the bed.
3. I guess Mom is, but only because she has a lot more to do than dad.

What's the difference between moms & dads?
1. Moms work at work and work at home & dads just go to work at work.
2. Moms know how to talk to teachers without scaring them.
3. Dads are taller & stronger, but moms have all the real power 'cause that's who you got to ask if you want to sleep over at your friend's.
4. Moms have magic, they make you feel better without medicine.

What does your mom do in her spare time?
1. Mothers don't do spare time..
2. To hear her tell it, she pays bills all day long.

What would it take to make your mom perfect?
1. On the inside she's already perfect. Outside, I think some kind of plastic surgery.
2. Diet. You know, her hair. I'd diet, maybe blue.

If you could change one thing about your Mom, what would it be?
1. She has this weird thing about me keeping my room clean. I'd get rid of that.
2. I'd make my Mom smarter. Then she would know it was my sister who did it and not me.
3. I would like for her to get rid of those invisible eyes on the back of her head.

funny eh? lol

Have a great day...Tessa is home sick today...I should just home school her the way this year has been going!

sheena

What I've learned....medically wise about trisomy 21

2007-02-07T09:46:00.000-08:00

Since I'm being proactive with Connors health as I am with Tessa's ..I've been doing tons of reading and searching for information that pertains to his health and wellness. I found a great web site that suggests time lines for particular examinations and check ups for eyes, ears, heart, thyroid , etc... as well as tips. I'm going to put the key things in point form for those interested and for others who want more info....I'll put the web site url.....
This pertains to children with trisomy 21/down syndrome
Firstly, I've learned ..it's called down syndrome not downs syndrome...discovered by John Down.

Cardiac
-it's essential to establish cardic status of every child by age of 6 weeks
-a clinical exam is NOT enough to detect all of the most serious abnormalities
-newborns should have a clinical exam plus a echocardiogram or clinical, plus echo and xray....then again at 6 weeks.
(note: makes me mad Connor didn't get properly checked until my insistance....and awareness of necessity until almost age 6 months...grr)
-even if early check ups prove "normal" regular check ups shoulds take place because some "structural probs may not have been evident at an earlier age"
-minor heart defects may be missed in those who didn't have an echo cardiogram
-"parents of children with heart lesions should be given verbal and written information about infectivecarditis preventative measures" That site has a sample document available
-a "normal echo" at birth does not mean that he/she won't develop heart disease at a later stage
-peridontal (dental) care is essential and very important with regards to heart health issues
-echo results should be read by a person trained in pediatric heart health

Ophthalmic -eye health
-all newborns should be examined for congenital cataracts and other eye probs by a trained specialist
-the test should be repeated at 6 weeks (grr again ...Next thing to get on someone about...other than a quick clinical ...Connor has not been looked at by a specialist)
-bewtween 18 and 24 months ..all should have a formal vision assessment....(but tips on the trisomy list..it seems for sure if you notice anything get your child in sooner....squinting, abnormal gaze,etc)
-after age 4...be sure to get eye exams every 2 years...lol...i think i broke or lost my glasses as child....every year so it may be sooner for your child if they are like i was :)
-common to have nasocrimal duct obstruction.... and up to 30% may have blepharitis (inflammation of the eye lids)

Growth
-chart growth patterns for at least the first 2 years charts
-there are a number of conditions that may lead to poor growth....congenital heart disease, sleep related obstructive airway, celiac, inadequate nutrients...likely from malabsorption...thyroid problems.
-thyroid should be checked when theres weight gain
head circumference should be measured at birth...and 6 weeks and charted

Cervical Spine abnormality
-"small risk for acute or chronic neurological problems caused by cervical spinal instability"
-cervical spinal xrays can not predict....dislocation/sublaxation at the atlantoaxial joint
- sport participation is ok
- if ever in a road accident...medics should be alerted to the possibility of cervical spine instability" and the care for it
*For that reason when I get Connors Medic alert bracelet I will put that info on it. Even though we are with Tessa all the time or someone else is...I got Tessa bracelet because if we are ever knocked unconscious in an accident I wanted her info known..the same for connor now too.
-if pain comes on behind the ear or neck, a change in walking, bowel or bladder skills after established ...keep in mind possible spine problem....get it checked asap by a neurologist or spinal orthopedic surgeon

Thyroid
-all babies with trisomy should be checked for hypothyroidism...I do not know if Connor was tested...guess I'll have to find that out.
A guthrie test is the finger prick for blood test...not all test this way..(I hope they do here for Connor...he hates blood tests ...dont we all)
-changes in energy, cognition, growth or weight...check thyroid
-even when on meds it should be checked regularly
-from my own experience, i can say that a thyroid dores not always initially show on tests ...it took 2 years of testing before mine showed...as hypo..actually hashimotos...which means it's inactive
-tests every 2 years from age 1 throughout life ..test T4, TSH and thyroid antibiodies
-the possibility of hyperthyroidism should be kept in mind too

Hearing
-with over 50 % hearing impairment may be mild, moderate, severe or profound
-do not let it go undetected or unchecked see a specialist in audiology asap
-information given to the parent should be supported with written information
-even if the baby passed at birth he/she should be checked again bewteen 6 and 10 months..."measure auditory thresholds, impedience testing and otoscopy"
-by age 10 months it should be known if there is permanent hearing loss...and then a plan put in effect for care and management
-18 months...same tests and again yearly until age 5..and every 2 years after unless probs
-our children are predisposed to ear wax build up due to narrow ear canals...this may affect hearing tests. Connor was tested ...he failed in one ear...but another test showed he failed because of ear wax build up..and that the middle ear ewas ok..no loss so far at age 4 or 5 months...we'll get him tested again soon....where's my calender...?

so that's my notes in a quick blurb...check out the site that I've got most of this info from....for further info, resources and references....I printed everything out...for my Connor binder....and highlighted the things to keep in mind for quick reference.
The Down Syndrome Medical Interest Group www.dsmig.org.uk/
Of course I've learned so much more about other things but that's a tale for another day........hope that this helps anyone interested.

snow day

2007-02-07T08:03:00.000-08:00

we got a snow day today...buses aren't running but school is open for those who have a way there...my van is in getting repairs so Tessa had no way to go to school...she's not complaining a bit.

hugs before school...

2007-02-06T08:21:00.001-08:00

Tessa's fav way to start the day...

the rollover

2007-02-06T07:08:00.000-08:00

Good morning! Connor started his day is his usual cheery way...with a smile and some sucks in the air -indicating that he was hungry. I fed, changed and played with him -we did some stretches, read stories together and sang some songs. Good thing he doesn't mind my voice...Tessa used to cry when I'd sing her lullabies ..I never knew if it was because the song was sad or my voice was that bad. likely the latter...lol.

I put him on his mat to play....he did his first rollover from tummy to back.....yay!!!
He's been doing it from back to tummy since before Christmas..but this was the first tummy to back...of course I didn't have the camera on...so I'll be watching for the next big roll over:) After his hard work ...he decided time to nap and off to sleep he went.

2007-02-04T15:07:00.001-08:00

Tessa's urology appt

2007-02-03T12:43:00.000-08:00

We're bacckkk...Tessa's appointment was a long drive as usual for a quick appointment. Results from her urodynamics in November were good...no reflex.That's good thing! They suggested as we were expecting that we consider the bladder augumentation surgery...and explained the procedure to us briefly..not explaining all the cons that I already about with it. I told them we weren't ready for that...and that we are hoping to do nerve regenation instead when it comes to Canada. Surprizingly...they thought that was okay for us to wait longer ...because there isn't a dire need for the surgery at this point and they agree that it should be up to Tessa and that she should be older. So now she's happy knowing that if she drinks more water, takes her medicine..it's fine to go without the surgery. She'll get a check up in 9 months to see if there are any changes.Yay!! I was so happy they didn't put their usual guilt trip about surgery on me.

Next for Tessa...March Spina bifida clinic....and neurosurgeon check up.

Next for Connor finding an optometrist...or at least getting him an appointment for getting his eyes checked. He has bllod work and a complete check up with a p3ediatrician in march...hopefully that appointment won't change!!
Happy Birthday...to Connor age 6 months today!!! He smiled wheni sang to him and told him about his birthday party when he's one year old..i think he's looking forward to that chocolate cake....better be good gluten free:)

2007-01-28T17:40:00.001-08:00

Next on the agenda...Tessa

2007-01-27T08:34:00.000-08:00

Tessa has an upcoming urology appt in Toronto at Sick kids...it's to review the results of her urodynamic tests from November. We are not looking forward to hearing their results because they are going to suggest surgery (again)...which we do not want to do and Tessa is terrified of. You can not even discuss this with her or she'll get upset. Her bladder is not getting as big as it should be by her age so they will suggest this.....
bladder augmentation using intestinal segments ileum, colon, and stomach to increase the size of her bladder. Sounds gross ...plus the side effects are not wonderful....first the surgery and recovery, the problems associated with bladder aug..include: mucous build up in the bladder...which can lead to more frequent urinary tract infections (currently she rarely gets any ...maybe 1 a year if that), metabolic growth problems, tumors (seem to occur about 10 years after), due to lack of bladder sensation the bladder can rupture or over stretch causing major problems...and if that isn't enough cancer is possible too.....I wonder why they are having a hard time convincing us to do this ...let alone Tessa thinking that she'd like to do for self esteem reasons.

I know until we are okay with it she'll never be...these decisions we want her to be old enough to decide and old enough to understand the pros and cons...she's not. they have been pushing for over 4 years for us to do this and 2 other major surgeries at the same time..they figure once they are in there they might as well do it all at once.

I have many friends whose children have done this surgery and they are ok with it..and feel it worked out good for them...We're just not there yet nor is Tessa....

Recently we heard about a newer procedure still in experimental stages...some friends are checking into it in the U.S. for their child...sounds more of a route that I would go if any.
it involves nerve regeneration....if you have had an aug done you are ineligible for this procedure...So my hopes are to hold off until we can see what happens more with this procedure....makes more sense to me.

Details about the study...
http://www.clinicaltrials.gov/ct/show/NCT00378664?order1

We took her to Chicago a couple years ago for the bladder stimulation program....and they told us that the way she was then she didn't need that surgery...and bladder wise things really haven't changed but I know they will still push the surgery....the Dr. hinted that way in November.

That's all on my mind today...lol....back to housework, laundry and dishes and kids

echo results

2007-01-26T09:04:00.001-08:00

Connors test went well..everything is perfect!!!! Yay! I can breathe!!!!
He is such an angel!! babbling in his crib right now telling stories......

When babies look beyond you and giggle, maybe they're seeing angels. ~Quoted in The Angels' Little Instruction Book by Eileen Elias Freeman, 1994

I think he was talking to someone last night..he sure was laughing looking beyond me...??

“When angels visit us, we do not hear the rustle of wings, nor feel the feathery touch of the breast of a dove; but we know their presence by the love they create in our hearts.”

echo results

2007-01-26T09:04:00.000-08:00

Connors test went well..everything is perfect!!!! Yay! I can breathe!!!!
He is such an angel!! babbling in his crib right now telling stories......

“When angels visit us, we do not hear the rustle of wings, nor feel the feathery touch of the breast of a dove; but we know their presence by the love they create in our hearts.”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
When babies look beyond you and giggle, maybe they're seeing angels. ~Quoted in The Angels' Little Instruction Book by Eileen Elias Freeman, 1994

I think he was talking to someone last night..he sure was laughing looking beyond me...??

Connor's echo test friday

2007-01-25T07:04:00.000-08:00

Connor has his echocardiogram tomorrow at 10:30..for those who pray please put my lil sweetie in your prayers... "think healthy and well" Thanks...means the world to me!

The value of friendship

2007-01-25T07:00:00.000-08:00

My friend Kim...sent me this this morning...
"Sheena

Your blog was absolutely wonderful. I cried all the way through Over the Rainbow...the front of my bathrobe is wet and my coffee is cold. I was just glued to the photos of your two Earth Angels. You are truly blessed by the Creator.

I wanted to put this comment on your site but I am totally out to lunch when it comes to computers...duh.

Our friendship has been long and strong since our first meeting at Sault College in September 1979. Several years may pass without seeing each other but you are always in my thoughts and prayers. When we do get together and look into each others face it is like only a day has passed. True friendship is hard to find and I know that ours is one that will live on forever.

If there is someway you would like to put my comments on your blog please feel free.

Hugs and Love. Kim"

Then after her email..I had this email from the site sparkpeople.com
We all have a handful of acquaintances--those people with whom we work or see at the store and casually say hello to and move on. But a friend is someone you confide in, bring over for an afternoon cup of coffee, invite to your wedding, or cry with when a loved one passes away. You just feel a sense of safety with a friend. Don't wait until a rainy day to express how much a good friend means to you. Often we are unaware of how much we mean to others until they speak up, and likewise we never know how much another person might truly need to hear such affirmations. An approving, cheerful word of encouragement can thrill a heart. Be sure to always say kind words before you part, show sympathy during hard times and affection during wonderful ones. Life would not be the same without positive friendships. Express your gratitude to someone today who has made a difference in your world!
If you have one true friend you have more than your share. - Thomas Fuller, English clergyman & historian
I consider myself very rich....because I have many true friends.

Gifts

2007-01-24T14:00:00.000-08:00

This is a fabulous book...A new friend online sent it to me...I read to page 194 the first night that I got it. It was a gift that I needed! It helped me realize I'm not the first nor the last to have a child with trisomy 21. Surprizingly so many are born to mothers under age 35....over 80 %.
Check out this link and listen to the song..I think it speaks for all children...life is a miracle!!
http://giftsds.segullah.org/photo_montage.htm

A friend once told me ...her mother said "all children should be welcomed into the world"!
Wise mama!
If you have children..go hug them ...no matter how old they are ....let your eyes light up when they enter the room...let them know how much you love them. All of my children mean the world to me....they are my world!!

2007-01-23T11:39:00.001-08:00

Click on the picture to see a montage
Tessa picked the songs...by her fav
Connor and Tessa

I like to travel...what can I say

2007-01-23T09:58:00.000-08:00

No matter what I face I'll adapt to the situation because adventure is my reality. I love to travel ...I like camping too..I like to pack what I need though instead of roughing it. That's where family, friends and good support lists come in handy.

Whether I choose a the shortest route or the off beaten path...I know life will be good...for anyone that has never read this poem..it is one of the best poems ever written, in my opinion....

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

http://www.our-kids.org/Archives/Holland.html

squeaky wheel gets the grease:)

2007-01-23T08:05:00.000-08:00

Connor's health center called today. He has an echo on Friday...yay! finally someone listening..guess the Doctors from yesterday were able to convince him to get moving with the test. I feel better about that. Now back to my 101 other things to do ...you know that never ending list.

a long day

2007-01-22T16:49:00.000-08:00

I had a long day today....I'm really starting to lose sleep over Connor being age 5 1/2 months with no echo or other health tests other than hearing..so I used today with Connor having a nasty viral cold to get him checked by anyone...a ped in particular.

Of course his ped Dr. that is a cardio specialist ped..was away again.. he's cancelled Connor's appts since Nov..we are now up to march for a first appt with him ...so i went to emerg..we were there from 11 am until 6:30 tonight...he has a virus like i knew..both ears are blocked with wax..i knew one was.

He got a chest xray..that was fine..puts me more at ease...no pneumonia...and the Dr who saw him said for me not to listen to the Dr that told me to stay off the internet..lol..like i was going to listen any way....

The Dr we saw in emergency set us up with a ped.The ped. came in and checked Connor all over and took his history.And he said that we can at least call him for the next 3 days if we need him and he is going to talk to Connor's Dr about speeding up the echo..he said he may not be able to convince him because other than Connor's hands turning blue the past says there aren't any signs showing the need????
Heart sounded good...no murmur:)

The first Dr. today was very sad for Connor and i that are needs are not being met..it was nice to have a little understanding in our frustration.

Connor's o 2 levels were 91, 91 and 92 today.

The Dr. said next time that i notice that his hands are blue to check his inside of his mouth ..to see if tongue or gums are blue.Indicate possible heart problem.

that's all I can remember about today...chips and coffee were my great lunch while cuddling Connor

Sheena

Blogspot 101

2007-01-20T12:45:00.000-08:00

here's my first posting...I created this site to put updates, links and info about my 2 littlest earth angels: Connor and Tessa.

Tessa was born with a birth defect called spina bifida and Connor was born with condition called T21....aka trisomy 21. Tessa is 9 years old and Connor is 5 1/2 months.

I have 2 other children-ages 20 and 19...And 2 step-daughters ages 21 and 18...all are great kids ...I would need another site to tell you about them..so this sites main focus will be blurbs and blogs on the 2 youngest.