Thursday, March 31, 2011

Vaccines in the Down Syndrome Population?

Since our children have delicate immune systems and other possible physical problems, the issue of vaccines is huge! Jett got one shot a visit for a total of two a month during his first five months of life. He hasn't had any more vaccines since. My present pediatrician agrees 100% to give no more vaccines even though she recommends them for the majority of her patients. His neurodevelopmentalist seems to think that Jett does show some symptoms of vaccine damage (sensitivity to light, visual stimming, inward turning of one eye). I am looking into ways to treat. If I could go back in time, I would not have given him any shots.

To understand more, I recommend these books, websites and articles:

Recent News Articles/Videos
Laurette Janak shares research about vaccinations and children with Down syndrome
February 17, 2012: http://abcnews.go.com/m/story?id=13073863
Prevenar (prevnar) and ACTHib both halted after four babies die.






Websites to visit

This is the web site of a classic homeopath that runs the vaccine yahoo group list.

Paul Doney has summarized a lot of info on this topic at:

www.childhoodshots.com Mary Tocco gives wonderful resourceful/helpful info. on her DVDs for purchase and more...



Books to read

by Mayer Eisenstein MD JPH MPH.


"Vaccine Epidemic: How Corporate Greed, Biased Science, and Coercive Government
Threaten Our Human Rights, Our Health, and Our Children"

The Vaccine Book by Dr. Sears (I followed his modified vaccine schedule. Now I know that I shouldn't have given any.)

About vaccinations, please read the relevant chapter in Gut & Psychology Syndrome . Babies in GAPS families must not be vaccinated until they have developed strong immune systems and good physical and communication skills: this means no vaccines until the child is 4-5 years of age. Even then, if you have to vaccinate, make sure that your child is absolutely healthy and well at the time of the vaccination. Ask to see the ingredients list of the vaccine and demand that they are explained to you. Try to avoid combined vaccines, look for single alternatives.

DVDs


Forum

The yahoo group is: vaccinations@yahoogroups.com

Related Posts

Promote Walking: Are Treadmills Good?

Question: Jett (DS) just turned 13 months old and is crawling all over, creeping forward 1-2 steps (prefers crawling), pulling himself up to standing and can walk forward if we hold his hands (just did it as an experiment, not that we are encouraging walking). Should I get a treadmill? I read that it's good for DS (In What You CAN Do for DS)... I think it's more important that he crawls and have no fear that he won't walk.... Once he walks on his own should I get one?

Answer: The treadmill research focused more on the parents reaction than the actual neurodevelopmental issues with the child. Many things weren't evaluated but from our experience, it is best to let the child progress at his or her own developmental pace aware of the steps (which I know you are) so that joints, reflex integration, etc. takes place in an orderly manner as the Lord intended.

Kay Ness, Neurodevelopmentalist

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Anemia Causes & Cures

Iron is very important because it is responsible for transporting oxygen to muscles and organs, including your brain. But don't supplement your child with Down syndrome iron unless your child's blood tests show low iron. (And even then, I'd give these strategies a good try before adding an iron supplement.)

Iron and Down Syndrome (from Down Syndrome: What You CAN Do edited by Kim & Qadoshyah Fish)

Iron is a “double-edged” sword. It is very important for life and growth, but it can also cause serious problems in children with DS. Do not give your child additional iron unless s/he has proven iron deficiency anemia. Iron increases the Fenton reaction and thus lipid peroxidation. It also aids in oxidative stress and damage. Oxidative stress is already increased in DS. [More detailed explanation follows in the article below by Ginger Houston-Ludlam.] Additionally, excess iron is often stored in the brain and may contribute to long-term CNS (central nervous system) dysfunction.
So, supplementing with iron just in case is not advised. See Biochemistry 101: Iron by Ginger Houston-Ludlam for more details on iron problems in the DS population. 

What about eating food high in iron? No, with our kid's immature digestive system, that does not guarantee adequate iron absorption.

What can you do to safely increase iron levels?

Rule out/treat
Astro-esophageal reflux, Celiac Disease, hypothyroidism and hypoxia -- all of which has an effect on the body's ability to process iron. (More info below in excerpts from Down Syndrome: What You CAN Do.)
 
The International Journal for Vitamin and Nutrition Research has published multiple studies supporting the supplementation of vitamin C with dietary iron to increase the bioavailability of non-heme iron. The amount of absorption is directly proportionate to the amount of vitamin C taken.

So before you supplement with iron, look to vitamin C to help the body better assimilate the iron that it is getting. Foods rich in vitamin C such as papaya, orange, cantaloupe, broccoli, brussel sprouts, raw green peppers, grapefruit, strawberries, etc. can be as effective as meat meals in improving iron absorption. (Go easy on the broccoli and brussels sprouts because they can mess with thyroid function.) Read: Vitamin C to find out how best to use Vitamin C supplements.

"In one of the earliest human studies, adult subjects maintained on vitamin A deficient diets developed anemia despite adequate iron intake. The anemia responded to vitamin A but not to iron supplementation…..Vitamin A supplementation of deficient children resulted in a significant increase in hemoglobin, hematocrit, and serum iron." http://www.ilsi.org/.../IVACG_vitA_iron_interactions.pdf  A word of caution: kids with DS have difficulty with vitamin A supplementation if they thyroid is not properly supported. Avoid the forms of retinal and beta carotene. Instead, look to getting vitamin A through fish oils.


Folate/folic acid and or B12 deficiency also can be a factor in production and/or function of red blood cells which can lead to anemia. See "Red blood cells and DS" below.

Avoiding phytates and oxalates may help. These can interfere with iron absorption from the gut, but the research is not conclusive on this subject. Phytates are found in bran and whole grains. Oxalates are high in nut and nut butters, beets and beet greens, tea, strawberries, gelatin, rhubarb, spinach, chocolate and wheat bran. Most of these foods are the very substance of a vegetarian diet. (When I added green tea extract to Jett's supplementation, his iron went from 24 to 11. Not sure if there is a direct correlation, but something to consider.)

Avoiding milk could also solve the problem. A diet high in milk or milk products can increase iron deficiency because these are high protein, low iron foods. Soy beverages are high in iron (also iron fortified infant soy formulas) but soy should be avoided for our kids because it interferes with thyroid function. Better alternatives would be flaxseed milk or coconut milk. (Almond milk is high in phytates or oxalates so wouldn't be a good choice either.)

Cook in cast iron pans as that will increase the iron content of your diet. However, this form of iron is not absorbed very well, so I really wouldn't rely on that.

Longvida Curcumin and Green Tea Extract can chelate iron, so consider that when supplementing.
 
 
Symptoms


Weakness, a haggard look, fatigue, lack of energy, tired looking eyes, shortness of breath, dull and poor memory, headache, premature wrinkles and dizziness on exertion are some of the indications of anemia.
Symptoms of iron deficiency anemia include fatigue, pale skin, weakness, shortness of breath, headache, dizziness or lightheadedness, cold hands and feet, irritability, tongue inflammation or soreness, brittle nails, fast heartbeat, and poor appetite

Normal Range

The normal range of ferritin in children increases as they age. In children between the ages of 1 and 5 years, the normal range is 6 to 24 ng/mL. But, 20 is optimal. In children between 5 and 9 years of age, the normal range increases to 10 to 55 ng/mL. These levels continue to increase into adulthood, at which point they can be up to 200 ng/mL.


For iron and iron enhancing products, see the DS Day to Day amazon Store.

Instead of iron supplements, you may want to try these first:

Liquid chlorophyll by World Organics. ($6-7) It does not contain Fe, but because the chlorophyll molecule is similar to hemoglobin, it can quickly, raise the Fe level
(much less than the standard 6 weeks for Fe supplements).

Organic Black Strap Molasses (see below for detailed info)
Organic/Grass Fed Beef Liver


Supplemental Sources of Iron

If your child is iron deficient and your doctor advises supplementation, here's info about the different kinds. 


Important: Iron supplements should not be taken within four hours of thyroid medication or else the thyroid medications will not work properly.

Iron Bisglycinate, is a non constipating iron supplement. Brands include

Solgar Gentle Iron
Solgar Chelated Iron
Now Foods Iron
Floradix 
The absorption rate of Floradix (liquid iron gluconate) is twenty-five per cent compared to solid iron tablets that have an absorption rate of two to ten per cent. Floradix provides maximum absorption by using the most highly absorbable form of iron, iron gluconate. Floradix also contains B vitamins and vitamin C to enhance absorption, herbal extracts to increase digestion, and fruit juices to ensure proper stomach acidity. So it is non-constipating. But it does have high natural sugar content with 5g of sugars per serving.

Spatone
Spatone costs $19.95
for a 28-sachet box. If your total order exceeds $50, there is free shipping and handling. If your total order is less than $50, there will be a $7.95 charge added.

Unfortunately, iron supplements such as Spatone often cause constipation. To offset that side effect, take a look at the post: http://dsdaytoday.blogspot.com/2011/10/constipation-causes-and-cures.html and drink plenty of water.


Increasing Iron Through Diet

From HealthCastle.com


Absorption of iron from food is influenced by multiple factors. One important factor being the form of the iron. Heme Iron, found in animal sources, is highly available for absorption. Non-heme iron on the other hand, found in vegetable sources, is less available. Iron rich foods of an iron rich diet are listed below:
Iron Rich Foods containing Heme Iron

Excellent Sources:

  • Clams
  • Pork Liver
  • Oysters
  • Chicken Liver
  • Mussels
  • Beef Liver
Good Sources:
  • Beef
  • Shrimp
  • Sardines
  • Turkey

Iron Rich Foods containing Non-Heme Iron

Excellent Sources:

  • Enriched breakfast cereals (to be avoided because of added synthetic folic acid)
  • Cooked beans and lentils (make sure they are soaked before cooking)
  • Pumpkin seeds
  • Black strap Molasses

Good Sources:

  • Canned beans (avoid canned goods because of aluminum, if you must, only use cans from Eden organic, they use BPA free lining)
  • Baked potato with skin
  • Enriched pasta
  • Canned asparagus
The absorption of Non-heme iron can be improved when a source of heme iron is consumed in the same meal. In addition, the iron absorption-enhancing foods can also increase the absorption of non-heme iron. While some food items can enhance iron absorption, some can inhibit or interfere iron absorption. Avoid pairing these iron-inhibiting foods when you're eating the iron-rich foods in the same meal.

Red blood cells and DS

from The Guide to Good Health for Teens and Adults with Down Syndrome by Brian Chicoine M.D. & Dennis McGuire Ph.D:

"Abnormal lab Results- MCV One lab test in which results are commonly elevated in people with DS is the MCV....if red blood cells are released from the bone marrow before they mature, the cells will be larger and the MCV will be elevated.

It is thought that red blood cells are often released early from the bone marrow of people with DS. One theory is that rbcs die more quickly in people with DS so less mature cells are released in order to replace them. Another theory is that there is an abnormality in folic acid metabolism in people with DS that may lead to larger rbcs.

An elevated MCV is generally not considered an abnormality that requires additional assessment in a person with DS so long as he has a normal blood count (hemoglobin and hematocrit) (that is, he is not anemic)......"
------

Anemia Home Remedies: Best Natural Cures


If anemia is diagnosed and no other disease is associated with it, then the following home remedies for anemia may be useful:

Figs
Eat four dried figs daily for a month and continue thereafter for another month if results are to your satisfaction.


Citrus Fruit
Due to high Vitamin C content, eat one orange or tangerine daily.


Beets
Beets are very a potent treatment for anemia. Beet juice is full of natural minerals like potassium, phosphorus, calcium, sulfur, iodine, iron and copper. It also contains vitamins B1, B2, B6, niacin, and vitamin P. Beets are very helpful in curing anemia. Beet juice contains potassium, phosphorus, calcium, sulphur, iodine, iron, copper, carbohydrates, protein, fat, vitamins B1, B2, B6, niacin, and vitamin P. With their high iron content, beets help in the formation of red blood cells.

Cabbage
Drink 1/2 glass of white cabbage juice on an empty stomach twice daily.

Lettuce
Eat 100 gm lettuce twice daily, chew well.

Spinach
Eat various preparations made of spinach daily or extract 1/2 cup of spinach juice for daily consumption.


 
Astro-esophageal reflux and Anemia 
 from the book, Down Syndrome, What You CAN Do:
This occurs when food that had already passed into the stomach and beyond comes back up into the Esophagus and may be vomited up. Most healthy people experience this from time to time. It is more common in babies because their food is liquid and therefore more easily brought back they spend less of their time upright the muscle at the top of the stomach that should prevent this is not yet well established. Some also have a hiatus hernia where the top part of the stomach is pushed just above the diaphragm into the chest. Babies with Down syndrome are more likely to have reflux, probably because the muscles of the stomach and esophagus that work to push food along seem to work less effectively. Symptoms may be very mild and merely a nuisance. Simple measures mentioned above may help. However, vomiting may be considerable and the child may not gain weight. In addition, the acid contents of the stomach irritate the lower esophagus causing discomfort, and sometimes bleeding from the esophageal wall. This can cause anemia. In these cases, medical treatment is necessary. Several different kinds of medicine are used, often in combination. They work in a number of ways - by preventing the stomach contents flowing back, by neutralizing the stomach acid and by improving the gastrointestinal motility. Very occasionally, these measures won't be sufficient and an operation to tighten up the junction between the esophagus and stomach will be necessary.
--------

Celiac Disease
 
from Down Syndrome, What You CAN Do
This is a condition in which the bowels are unable to absorb particular nutrients from food. This can cause the body to run short of some nutrients, and the stools to be abnormal. Possible malabsorption of a number of different vitamins and minerals has been described in Down syndrome from time to time. However, the evidence for this is inconsistent and whether the malabsorption leads to any health problems is uncertain.

There is, however, one important type of malabsorption that is more common in Down syndrome called Celiac Disease. In this, the body develops an allergy to part of a protein called gluten, which is found in wheat and some other cereal grains. Symptoms include poor growth, abnormal stools (diarrhea, frothy, foul smelling or bulky stools are typical), swollen stomach, tiredness and irritability. Anemia may also result. Special blood tests are available which may help with diagnosis, but a jejunal biopsy may be necessary. In this test a small tube is swallowed, and a sample of the wall of the jejunum is removed for examination under a microscope. Treatment is by special diet excluding gluten. This should he supervised by a dietitian....

Thyroid & Anemia

from Down Syndrome, What You CAN Do
The adverse effects of abnormal thyroid function are well-known. An under active thyroid gland leads to cognitive impairment, increased risk of coronary artery heart disease from hypercholesterolemia (14), dry skin, constipation, and anemia.

Folic Acid

from Down Syndrome, What You CAN Do
Folic Acid is particularly important in the population of people with Down syndrome. It is needed for the synthesis of DNA and RNA, which are the building blocks of cells. Folic Acid also helps prevent changes to the DNA that could lead to cancer. It is also needed in both children and adults to be able to make normal red blood cells and prevent anemia. Read about the best types of folic acid for the DS population:  Why B12 & Folinic Acid

Piracetam and Hypoxia
from Down Syndrome, What You CAN Do
Hypoxia is a condition of low oxygen levels in the tissues. Hypoxia can be caused by lack of oxygen in the air (hypobaric or high-altitude conditions), decreased oxygen carrying capacity of the blood (anemia or carbon monoxide toxicity), by impaired circulation (ischemia, heart attacks, blood clots, etc.), or other causes.

For decades piracetam has been studied as an anti-hypoxia agent. This may have special application to DS due to developmental delays in the closing of the heart muscle wall between the right and left sides of the heart. This results in the mixing of blood from the right side of the heart (which pumps oxygen-depleted blood to the lungs) with blood on the left (which pumps oxygenated blood to the rest of the body). This effectively diminishes oxygen delivery capacity and exposes affected individuals to some degree of chronic hypoxia.

Hypoxia has an adverse effect on cognitive functioning, which piracetam effectively prevents [see SDN v1n10].
Hypoxia is also associated with increased lipid peroxidation, which is inhibited by piracetam and antioxidants [Nagornev et al., 1996]. This effectively increases human resistance to high altitude. In aged patients with ischemic heart disease, the combination of piracetam and tocopherol acetate (vitamin E) provides better control of angina pain, increases exercise tolerance, and positively influences hemodynamic measurements [Pimenov et al., 1997]. These observations confirmed earlier work [Pimenov et al., 1992].

Hypobaric hypoxia of pregnant rats causes memory impairment and learning delays (in both passive and active tasks) in newborn pups. Postnatal piracetam (200mg/kg/day) in the second and third weeks of life partially corrected behavioral disturbances and physical development, but not adaptive behavior, caused by this prenatal hypoxia [Trufimov et al., 1993].

The adverse role that oxidative stress can play in cognitive functioning can also be blocked by piracetam. Craniocerebral trauma in rabbits causes 1) increased free radical activity, 2) decreased antioxidant function, and 3) increased lipid peroxidation throughout the brain. These effects are prevented by piracetam or amphetamine (which are stimulants), but not by phenobarbitol (a CNS depressant) [Promyslov and Demchuk, 1995]. The lack of any direct antioxidant effect of piracetam or amphetamine in an in vitro model suggests that the antioxidant effect is entirely mediated by secondary metabolic effects of these compounds.

Helpful Website

If your child has anemia this is a great web page: https://sites.google.com/site/superdownsyndrome/sleep/iron


Sources

http://www.livestrong.com/article/195055-does-vitamin-c-increase-iron-absorption/#ixzz29ff0A5NK

http://www.livestrong.com/article/207206-normal-ferritin-levels-for-children/#ixzz1JWkDsED8

Down Syndrome: What You CAN Do edited by Kim & Qadoshyah Fish

The Guide to Good Health for Teens and Adults with Down Syndrome by Brian Chicoine M.D. & Dennis McGuire Ph.D 

HealthCastle.com 

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It's Potty Time!

Can our babies and young children be potty trained? 

Of course! Jett was only 10 months old the last time he went #2 in his diaper. #1 took longer, but he has it down. :) As for wiping his bottom on his own (well), he was 5 years old.

Young babies

Teach your baby to be diaper free right away.
  Notes at 13 months old: 
Jett hasn't gone #2 a diaper in many months and he's only 13 months old now! He whines until we put him on his potty then he goes every time! He went in a public bathroom at 12 months old. And we brought the potty with to visit my sister this weekend and he went at her house as well. If your child never gets used to wearing a soiled diaper, he'll be much more likely to communicate to you when he needs to go.

When I did have him go diaper-less, he was communicating that he needed to pee by the end of the day. But then winter came so I had to but clothes back on him! This is much easier to do than you'd think.

I highly recommend reading Diaper Free by Ingrid Bauer for details.


Babies or children with a digit span of 2 or 2.5

You'll need to watch for signs to tell you when your child is ready. At 22 months old, Jett had been waiting until I checked his diapers, which were dry and THEN peeing on the changing table. So, it was easy for me to transition him from peeing on the table to peeing in the potty (which he has been doing for a long time, just not consistently.) So it just hasn't been a struggle.

While I'm taking off his diaper, I sing whatever nursery rhyme comes into my head at that moment like: "Let's pee pee in the potty, the potty, the potty, Let's pee pee in the potty & see where it will go!" Or "this is the way we pee in the potty, pee in the potty, pee in the potty, etc." He gets excited and says "pee" and "potty" and then does it. Of course, this is one of many strategies I've been using, but he seems to WANT to hold it and we've had a lot of dry diapers this way. (I only had one wet diaper yesterday and it was my fault!!) Now if I could just get him to TELL me when he needs to pee... that would be great! (He's refuses to poop in diapers, so that was an easy one.)


Teach your child to feel what it means to be "wet" vs. "dry"


Potty training would be very difficult if your child can't tell the different between wet and dry. (When I moved from Florida, I had difficulty telling the difference between wet and cold!) Here is a great video by Anat Baniel, creator of ABM (Anat Baniel Method) that shows how to help with potty training: https://www.youtube.com/watch?v=JqIbVv7gslU

Videos on Potty Training

Jett and Oliver (2.5) respond really well to shows about potty training. Daniel Tiger's Neighborhood has several really good ones particularly about not holding it even though you are playing. Elmo has a potty one and so does Bear in the Big Blue House Potty Time (there's like 3 potty episodes on one DVD). All three of those are very gentle with cute little songs and such... At least that would get your child into the mindset and teach some cute key phrases and nice habits. Other parents have recommended the Potty Time DVD from Signing Time founder, Rachel Coleman.



Potty Training and Infection

Can an infection cause potty training issues? Yes! Kids with PANDAS or PANS can lose the ability to control their urine. In such a case, if the PANS/PANDAS is properly addressed, potty training should resume. See the book America is Infected. Jett has been treated for PANS, but when he is sick, he may wet the bed.

Bed Wetting

Nighttime wetness can be from adrenal issues or sleep apnea. (More info to come.) Jett stopped wetting the bed at night when I started the QRI Home Laser Program. 

Teach a child with DS how to use the toilet (in four days)

http://tinyurl.com/43rrl4w
I didn't use this method, but it has worked for many families.


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Massage Your Baby

I recommend massaging your baby everyday with an oil you would ingest yourself (organic olive oil or coconut oil work great). Jett's dry skin was so bad that I had to slather on olive or coconut oil several times a day. Massaging stimulates growth hormone release, feel good hormones, bonding hormones, promotes sensory awareness (both tactile and olfactory, if your oil is naturally, not chemically scented) and better muscle tone.

You can start massaging your baby more or less from day one. To help prevent colic, you may want to start when your baby is around one month old.

However, if you didn't, it is never too late, although it is kind of hard to massage a baby that crawls away... Although Jett will hold still for one--at least when he's sleepy.

What Kind of Oil?

Choose a good organic oil for the baby massage. And choose one that doesn't have a strong smell.

Linda Sherman has a child with DS and owns Heritage Essential Oils. She has an information page devoted to DS & oils here http://heritageessentialoils.com/downsyndrome.php. Oils was the first thing I used with Jett when he was born because it could be absorbed through the skin and I had to massage him so many times a day.

I've also heard of Young Living products, which is set up sort of like Amway, but these folks swear by the oils. Based on Biblical premise of healing with oils. http://www.youngliving.com/en_US/index.html

Of course you can buy the oils at Whole Foods or any local health food store as well.

Use only a few drops at the time. Rub the oil in the palm of your hands to make it warm before massaging.

Attend a class

Infant massage is not difficult! But it may be bit tricky the first time. Attending a baby massage training is a perfect way to learn how to do it. And it's fun! But if you can't find a course that works for you, you can buy a book or a DVD or check one out from the library.

If your baby has some tummy pain (Jett had it every night it seemed), massage is a very good idea!

Check the video below to get an idea of how to do it.


Warm room temperature
Since babies easily get cold, it is very important to carry out the massage in a warm room.

Really young babies may very well start crying when undressed even if the air temperature is as high as 80F (27 C).

A tip is to choose the smallest room you have, shut the door and put in an extra radiator for a while to get the room temperature up.

A small bathroom or a walk-in closet works well as long as you have enough space on the floor to do the massage.

The older your baby gets, the less sensitive he will be to the temperature.

Not drafty

Even if the room temperature is alright, if it is drafty, your baby might not like the situation anyway. Close the window!

Undressing the baby

If you want to give baby massage to an infant younger than 2 months, it might be a good idea to not undress the baby completely from the start.

Many newborn babies seem to feel insecure or cold when naked and just cry until dressed again.

Not too hard, not too gently

I think it is really easy to be too gentle when massaging a tiny little baby. Of course you can't be heavy-handed, but a too gentle touch will only tickle the baby. Be a little bit firm.

If you watch your baby carefully you will soon notice what he prefers.


Choosing the time of the day

If you attend class, try choosing a time if the day when your baby is likely to be awake.

If you have no routines yet, choose a time that you find convenient.

At home, it may be wise to do the massage in the evening. This can help your baby navigating in the 24 hours of the day - "now it is evening and I will soon go to sleep".

It can also prevent tummy pain at night.

Source

http://www.easybabylife.com/baby-massage.html

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Teach Your Baby Math

Very important and easy to do! Jett started this at 13 months and he loved it (at first)! Make sure you only do a couple a day because Jett got really sick of them quickly.
Read How to teach your child through the dot method from childandme.com.

Also, there's a free e-book about it on brillbaby.com. 

Making your own dot cards

You can make your own power point presentation and show the slide show or print them out. I just painted the dots with non toxic tempera paint on paper by "swirling" the brush into a circle. You can use a small "spouncer" (round sponge on a stick from a craft store) or dot stickers as well. He loves having the papers in front of him, plus, you want to avoid exposure to computers/electronics as much as possible. It's a good idea to keep some plants by your computer and printer at all times (away from baby!) to absorb the toxins they emit.

Free printable dot flash cards 

Reviews of Math Programs

BrillKids Math Program a computer based program

Numicon Math a hands on kit


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