Thursday, March 31, 2011

Stimulating Growth

Please enjoy this collection of notes on growth in relation to T21 as well as an action plan to help stimulate growth in your child. Hopefully it will at least get you started on figuring out how to get your child to grow at a normal, steady rate.
The DS Growth Chart

Perhaps, according to the special DS growth chart, your child is growing fine, but did you know that, as of December of 2011, the APA (American Pediatric Association) no longer supports the use of the DS growth chart? Imagine if there was a special height/weight chart for people with type II diabetes--what would it look like? If you had diabetes, would you want your doctor to plot you on that chart and say that it's fine to be in the same range as other overweight people with diabetes? I hope you find this idea ridiculous. I feel the same way about the DS growth chart.

If you have not plotted your child's growth on a typical chart, I encourage you to do so.

Typical growth charts:

DS growth charts:

Plot your child's growth here:


A note about endocrinologists... Chances are that they will not help you. Usually they specialize in diabetes for adults. But do continue to look for one who will help you just in case. Don't settle for: "That's normal for DS" or "He's growing -- on his own curve." (I'm collecting contact info of endocrinologists, etc. who properly treats children with DS. Please let me know if you find another one!)

No thanks to the endocrinologists who I've taken Jett to, he is finally growing after only gaining one pound between the ages of 6 months to 18 months -- that's A YEAR. (They said nothing was wrong with his growth because he has Down syndrome. Yes, that's what they said after only gaining one pound in a year! I'll spare you my reaction to that statement.)

Check out the Magic Foundation's guide to Your child's first visit to the Endocrinologist to help you prepare.

My suggestions: be very calm and take deep breaths. Bring the studies I mention and make sure they have a copy of your child's growth chart [double check!]. Keep in mind that, although you want to maximize your time with the endo you have and want to give him or her the full opportunity to help your child, your journey doesn't stop with the first endo you meet.

What does healthy growth look like?

A typical child, during the first year of life should grow 7-10 inches. During the second year growth slows to an average of 5 inches/year. During the third year, growth averages 3 inches/year. From age 4 years until puberty, growth should be at least 2 inches/year. Pubertal changes prompt a growth spurt of 2 ½ -4 ½ inches/year for girls usually starting by 10 years. However, boys experience both puberty and this growth spurt later -- usually starting by 12 years and averaging 3 - 5 inches per year. After pubertal changes are completed and bone ends fuse, no further growth is possible.


For head circumference issues see Cerebral folate deficiency in Down syndrome.

Briefly, here's a plan of action:

I would first get your child's thyroid checked and fixed. See Thyroid & DS Go Hand in Hand. Request a full thyroid panel and don't settle for just testing the TSH. You need more information than just that in order to properly monitor thyroid function (and so would a knowledgeable doctor). If you child's temperature is low, this is an indication that his thyroid is not properly functioning and could be interfering with proper growth. If the temperature fluctuates throughout the day, that could indicate a problem with adrenals as well. Also see below: How could thyroid dysfunction be associated with the pathology of Down’s syndrome?
Next, I would check your child's levels of zinc and iodine and supplement as needed. See Why supplement and monitor zinc? (That post is very long so I have excerpts on growth & zinc below.)
Levels of growth hormone should be checked as well.

Low serotonin, very common in people with T21, could also be the culprit. Low serotonin is related to sleep apnea, another very common condition of those with DS. This can be addressed with l-tryptophan supplementation as well as B6 and niacin. (Supplementation of 5HTP would work faster, but 15% of people with DS have seizures when taking it....) Nutrivene's nighttime formula has tryptophan, B6 and l-ornithine (promotes growth hormone release). Read the book The Mood Cure by Julia Ross for details on how to naturally treat low levels of serotonin as well as natural thyroid treatment.

Supplement with fermented cod liver oil. Cod liver oil, which is high in both vitamins A and D, partially corrected growth delay and weak legs in turkeys fed a deficiency diet, but the combination of cod liver oil and high-Activator X butter was twice as effective. See How Much Vitamin D3? and Fermented Cod Liver Oil

Give bone broth. I incorporate bone broth into as much of Jett's meals as possible. I cook his rice, quinoa and beans in broth. I even give it to him cold to drink. See First Foods: Yogurt & Bone Broth Bone broth is full of nutrients necessary for growth.

Supplement with choline. Choline protects against poor growth since the release of growth hormone is affected by acetylcholine. Body Bio PC is good although it is expensive and does have soy. Check my store for other alternatives. Supplementary inositol may also be needed. See Pregnant & Nursing Moms need Choline. Also see

Give goji berries. Goji berries are known to contain a unique polysaccharide that stimulates the pituitary gland in the anterior of the brain to produce more Human Growth Hormone (HGH). These polysaccharides, which have been demonstrated to strongly fortify the immune system, have been found to be a secretagogue -- a substance that stimulates the secretion in the pituitary gland of HGH, a powerful innate anti-aging hormone. See for more info on goji berries. I give Jett goji berry juice an hour before bed with some of the supplements mentioned (tryptophan, B6 and l-ornithine).

Massage stimulates growth hormone release. See Massage Your Baby.

Play Mozart for your child. A 2007 study reveals that children showed a 50 percent jump in pituitary growth hormone while listening to such classical music. Here is the article for details:

Rub frankincense oil on his big toes, middle of the eyebrows, roof of the mouth, the crown and back of the head.
(These spots to put the oil targets the pituitary gland and hypothalamus.) Researchers have discovered that frankincense is high in sesquiterpenes, which helps stimulate the limbic system of the brain (the center of emotions) as well as the hypothalamus, pineal and pituitary glands. The hypothalamus is the master gland of the human body, controlling the release of many hormones including thyroid and growth hormone. Frankincense is now being researched and used therapeutically in European hospitals and is being investigated for its ability to improve human growth hormone production. I put this on Jett's feet before his nap and twice before bed time. I like: 

Get a sleep study to see what could be interfering with sleep and thus the release/production of growth hormone during sleep. See Sleep Study: The Results

Look into supplementing with astragalus. See Astragalus Promotes Growth Hormone Release. At 25 months/21 pounds, I give Jett 400 mg a day that I break up into three doses.

Try nutritional strategies. 
Mom, Rosa Reyes, found this list of foods that stimulate growth hormone naturally. She shares her Growth Smoothie

There are many foods on the list that my son cannot eat due to food sensitivity. We are giving him a smoothie of pineapple, banana, flaxseed, coconut milk and a teaspoon of coconut oil mixed with hypoallergenic multivitamins. I give the smoothie as a dessert after dinner. I created this recipe as a way to help my son take his ASD multivitamins because he doesn't like the flavor. I realized later this recipe was ideal for stimulating growth hormone!

Rosa compiled the following information from the book,
Autism: Have We Done Everything We Can for This Child? Effective Biomedical Treatments by Jon Pangborn and Sidney MacDonald:

Here is how to calculate the amount of protein and calories for your child:

  • Children need roughly 1,000 calories per day plus 100 calories for each year of age. Example: A four year old in good nutrition status needs about 1,400 calories per day.
  • Preschool-age kids who need to "catch-up" in growth and gain weight require 150-250 kcal/kg (70-125 kcal/pound) of body weight per day. Extra calories should be mostly fat and carbohydrates, as these spare the protein to fuel growth. The extra fat can be a combination of olive, flax, and fish oils.
  • One to three year olds in good nutritional status typically need 100 kcal/kg (45 kg/pound) of body weight per day.
  • Four to six year olds in good nutrition status typically need 90 kcal/kg (40 kcal/pound) of body weight per day.
  • Protein requirements, minimally, are 1.2 grams/kg (55 grams/pound) of the body weight per day for one-to-three-year-olds, or at least 16 grams/day; 1.1 grams/kg (50 grams/pound) of body weight per day for four-to-six-year-olds, or at least 24 grams per day. More is fine, but this is a bare minimum.
  • During catch-up growth, protein requirements go up to 3.2 grams/kg (1.5 grams per pound) of body weight per day for preschool kids, or as much as 40-50 grams per day.
  • Fat is usually unrestricted in kids who are not overweight. Many parents think they should not allow fats, but clinical signs of fatty acid deficiency are common in children on low-fat diets....
Palate Expanders have been helpful in getting children to have a substantial growth spurt.

Natural GH stimulant blends. I haven't tried this yet, but it looks interesting:

If none of the above works, look into the growth hormone stimulant called sermorelin. See a non DS related study on growth delayed children and their success with sermorelin: I do know of one infant with DS who is on sermorelin and has grown on it and has suffered no ill effects. As soon as we get the money, we will probably put Jett on it as well. Here is an overview of sermorelin: A "sports medicine" doctor would know about this treatment if your pediatrician does not.

If that doesn't work, look into growth hormone treatments. The medical industry used to think there was a link between leukemia and growth hormone replacement, but new studies show this is not true. See below under "Growth Hormone & DS" for links to growth hormone info as well as excerpts from studies. In order for your insurance to pay for Hgh treatment, your child will have to do a bone age test, various blood work and a sleep simulation testing gh levels. Here's more information about Hgh treatments from the Magic Foundation: Growth Hormone Therapy - Questions
How can I tell if this action plan is working?

The first sign Jett showed was an increase in appetite -- I should say, he actually got an appetite! I found myself having to make double the food, then triple, then just tons. At this point, I make what I think will be the amount he will eat for the whole day and then a lot of back up foods like avocado and bowls of pink rice cooked in broth. My rule is to feed him until he refuses, but lately, that's been taking over an hour! But if that's what I have to do, that's what I have to do.

Also, right before he has a big growth spurt, he takes an extra nap or sleeps longer for a couple of days.

Neighbors and friends will probably notice before you, since you see him everyday. I heard a lot of: "He looks different--he looks like he's grown!" which prompts me to measure him.

Jett gains weight and his feet usually get a little bigger before he has a growth spurt. So his clothes will be a little tight and then soon his feet are sticking out of his pant legs and the waist fits again.

How can I measure a squirming baby/toddler?

I took an old towel and marked out measurements with a permanent marker. I take a washable marker and, with my husband's help, we lay him down on the towel with towel edge lined up against a box. My husband is at the head end and puts his head against the box. Then I straighten his leg out and mark where his heel hits the towel with the marker. Then I let him go. It doesn't take long at all. It doesn't really matter how you do it just so that you do it the same way each time.

If your child can stand up, by all means, measure him against the wall. But for some reason, Jett has a HUGE aversion to standing against the wall.

For head circumference, I take a string and while my husband is holding him and possibly reading with him, I quickly put it around his head (making sure I hit the middle of his forehead) and mark the spot with my finger. Then I take a pen and mark the spot and measure it against the tape measure. You can use a flexible tape measure if you'd like, but Jett is obsessed with it so he just goes crazy trying to grab it. The skinny little string is far less stimulating to him.

For weight, I weigh myself then I weigh him with me and subtract.

Good luck and I hope you'll be shopping for new clothes soon!

If/when your child grows, I'd love to hear the details of your success.

Research notes

Stats on Poor Growth in T21 individuals

Birth weight, length, and head circumference are less in DS compared with typical infants. Newborns with DS weigh approximately 0.18 to 0.37 kg less than their siblings [34]. Mean length at birth is approximately 0.5 standard deviations less than control newborns [35]. In a study of 105 children with Down syndrome, length, weight, and head circumference were below those of normal healthy children at birth; remained lower until puberty, with the growth spurt being earlier (age 11 in boys and 9.5 in girls); and were blunted compared with controls [36].
Short stature — Growth rate is reduced in DS compared to typical children, especially in infancy and adolescence. Growth is most reduced in children with severe congenital heart disease [35,37]. In adults with DS, the average height in males and females is 61.7 and 57 inches (157 and 144 cm), respectively, and the average weight is 157 and 140 lb (71 and 64 kg) in males and females [38]. Growth charts for children with DS have been published in populations in the United States [37,39], Italy [40], the Netherlands [41], and Sweden [42].
The cause of DS-associated growth retardation remains unknown; low circulating levels of IGF-1 and diminished provoked and spontaneous secretion of GH have been reported in some patients [43,44]. Serum GH levels are not low in children with DS [45,46], but suboptimal endogenous GH production as a result of hypothalamic dysfunction has been demonstrated [47]. Selective deficiency of IGF-1, but not IGF-II, has been seen in Down syndrome patients who are older than two years [48,49]. IGF-1 receptors are present in brain cells from fetuses with trisomy 21 [49].
Children with Down syndrome may have a shortage of growth hormone (hGH) which is produced in the pituitary gland. hGH replacement is fairly controversial, but a child with reduced levels of hGH may be a candidate for hGH replacement therapy. It is quite common for children with genetic disorders such as Down syndrome to be short in stature and special growth charts have been developed for children with Down syndrome. However, some doctors have come to believe that children with Down syndrome should be charted on the normal growth charts. If a child fails to grow on these charts, it may be a sign that there is an endocrine problem such as hypothyroidism or hypopituitarism. Or some form of sleeping disorder that prevents proper hGH release. A sleep study may be advisable.

Ginkgo & REM

Ginkgo is found to help those with DS sleep much more soundly with better REM sleep. More sound sleep can mean better sleep which may aid in growth hormone release.

Growth Delay & Zinc

“Growth retardation is a cardinal characteristic of Down syndrome” (Annerén et al, 1990). It
is not known what the underlying mechanism is responsible for the retardation of growth. DS
children have normal levels of human growth hormone (hGH) and low levels of
somatomedin C — also called insulin-like growth factor (IGF-1). IGF-1 is regulated by hGH
postnatally, and it appears that in DS there is a delayed, possibly incomplete, transfer from
foetal IGF-1 to the hGH regulated IGF-1 (Annerén et al, 1990). Growth is mainly restricted
between the ages of 6 months (when hGH starts to regulate growth) and 3 years. Some, but
not all, researchers have found that growth after this age is near to normal, just starting from a smaller stature (Annerén et al, 1993). Napolitano et al (1990) found that the level of IGF-1
rose after zinc supplementation, especially in children over 7. Zinc levels diminish with age
in DS people, as with normal people, though this happens earlier in DS, so it is conceivable
that the results were more pronounced with older children as they had a greater need for extra zinc.

The effect of zinc supplementation
Strangely, despite the well documented link between zinc deficiency and growth delay
(Passwater and Cranton, 1983), this author found only one paper investigating the effects of
zinc supplementation on growth in DS children. Napolitano et al studied 22 DS children
whose growth velocity was calculated for the six months before the period of
supplementation and during the six months of therapy. They were supplemented by os, and
their rate of growth compared with special growth charts for DS children (Cronk et al, 1988).
It was found that 15 of the subjects moved into a higher centile in their growth charts and,
interestingly, that the children older than 7 years showed a greater differential in growth
velocities before and during supplementation than the children aged 4-7 years. This
particularly noteworthy when compared to the finding that suppressed growth occurs earlier.
Unfortunately, no children under 3.8 years were included. The results for children under 4
years, and over 10 years (girls) or12 years (boys) were considered separately to avoid
interference by first childhood and pubertal growth spurts.
This author considers that there could be huge potential for zinc therapy to minimize growth retardation. Zinc is essential for DNA and RNA polymerase and thus for cell proliferation; it is necessary for protein metabolism; and as it is essential for the functioning of hormone receptors (such as protein kinase C) zinc is possibly required for hGH and/or any of the hGH regulated growth factors to function efficiently. The results of Napolitano et al’s work are encouraging, but need to be repeated with measurements of the foetal variant form of IGF-1, and assays into numbers and activity of hGH binding sites in DS would be useful.  Further research using younger children would be extremely valuable in illuminating the role of zinc in hGH functioning, transfer to hGH regulated IGF-1, and growth delay. Napolitano et al suggest the possibility that thymus hormones may have a role in regulating the secretion of hGH in DS children. Considering the importance of the thymus and thymic factors already discussed, this link raises many more possibilities.

The significance of the thymus
“The majority of immune alterations observed in DS subjects seem to depend on defective
thymic function.” (Fabris et al, 1993). This would include low levels of thymulin; a reduction
in and/or disruption to the subset division of, T-lymphocytes; a reduction in B-lymphocytes
(the proliferation of which is controlled by the T helper cells) and diminished delayed
hypersensitivity — all part of what is known as the adaptive immune system. Napolitano et al (1990) claim that low zinc levels are responsible for the early atrophy of the thymus. One
obvious link between the thymus and low zinc status is that zinc is required to transport
vitamin A from the liver, and vitamin A is necessary for the growth hormone which
maintains the thymus (Meek, 1996).

How could thyroid dysfunction be associated with the pathology of Down’s syndrome?
The thyroid hormones, along with insulin and human growth hormone, are responsible for
accelerating body growth. It has been found that low rT3 levels could impair growth hormone stimulation (Lejeune), and that all DS children with elevated TSH exhibit more severe growth delay (Bucci et al). Increased weight gain often becomes apparent in many individuals with DS (Pueschel), a common symptom of hypothyroidism as the thyroid controls basal metabolic weight. Indeed Pueschel states that one cause of weight gain in DS is a decreased intracellular metabolic rate. Thyroid dysfunction interferes with the hypothalamic-pituitary- thyroid axis which modulates thymic activity, thus affecting immunity (Napolitano et al) and DS subjects are characterised by an unbalanced immune control including poor performance by the thymus (Serra and Neri, 1990). Both thyroid hormone deficiency (Barnes and Galton) and DS (Lejeune) are associated with mental retardation. Lejeune discusses the role of the thyroid in directing tubulin organisation, and points out that only three conditions exhibit neurofibrillary tangles: Alzheimer’s disease, hypothyroidism, and DS. It is interesting that many of the physical characteristics of cretinism (extreme thyroid deficiency during foetal or early life) correspond with those of DS such as enlarged tongue, open mouth, broad face and flat nose.

Tryptophan & Growth Hormone
Tryptophan helps control hyperactivity in children, relieves stress, and enhances the release of growth hormones necessary for the production of vitamin B6 (pyridoxine).  Source:

Arginine & ornithine

Arginine and ornithine are used clinically to increase the release of growth hormone. Typically, relatively large doses are required to produce this effect. However, there might be some degree of growth-hormone effect from smaller doses in children who are slower growing and/or metabolically challenged in varying ways. More research will be needed to determine whether this effect is significant in Down’s syndrome. Source:

Growth Hormone & DS

Linley, a fellow researching mom, shared this information as well as her experience with GH:

The GH/IGF-1 axis has known problems in DS and so this issue seemed almost inevitable. But, honestly, if you don't go to a doctor who has a history of prescribing growth hormone to children with DS, you may be in for a struggle.

The first tests the doctor would run is a IGF-1 and IGF-2 assay, as well as their binding proteins. [Andi: my step son also got a bone-age test.] And then the a growth hormone stimulation test.  This may be necessary to try and get your insurance on board.  If you could show low levels of HGH then you stand a better chance of coverage.  Unfortunately, the actual pool of growth hormone is not usually the problem in DS.  One of the problems seems to be in the growth hormone releasing hormone, not in the actual production of growth hormone.  So, if we artificially stimulated its release, then indeed your child may show normal levels. However, if growth isn't happening, clearly your child's not releasing HGH on his own if his IGF-1 levels low.

One way to go is give IGF-1 injections, because tests may show this deficiency, thus insurance may cover this treatment. [Jett's IGF is low but I still can't find a doc here to help--they don't understand why help him grow normal--sorry, but they act as if his life isn't valuable, therefore something "little" like growth is unnecessary for a child "like him"] This is the route my friend went, but it was not having the desired effect on his growth.  IGF-1 works in a negative feedback loop with HGH.  In other words, it helps to regulate the amount of HGH the body produces.  if there is enough or especially too much then the body slows down on HGH production. 

So, she and her doc decided as a "team" to try HGH, even though she knew her insurance would deny coverage.  They went with a drug company called Norditropin.  They do what is called their "jump start" program where they provide the HGH for free and monitor the results.  With this information you then make a appeal to your insurance to show that indeed the drug is effective and necessary. [This is very common and it's the same things that my step son's doctor did.]  If the insurance company again denies, you then submit your financial records to the drug company and they work out a plan to provide the HGH at is discounted rate according to need. 

And it's working great for Linley. Her son has grown at not only a normal rate, but actually an accelerated or "catch up" rate.  And she has not seen any noticeable bad side effects from the drug. 

One thing to look out for, she said, is that the growth hormone treatment may suppress the thyroid during the first 6 months of treatment.

Another friend of mine has a child Jett's age (24-25 months) and is on HGH and is growing well too with no side effects.

Meanwhile, with this new information that Linley has shared, I'm looking into more way to stimulate the hypothalamus (responsible for HGH release) rather than the pituitary gland (responsible for production)...

Excepts from studies:
"...GH treatment results in normal growth velocity in Down’s syndrome."

"Excluding data on patients with known risk factors for leukemia provides a more accurate estimate of the risks in GH-treated patients. The incidence of leukemia in these patients is comparable to that in the general population of age-matched children." 
Watanabe S, Tsunematsu Y, Komiyama A, Fujimoto J. 1988 Leukemia in patients treated with growth hormone [Letter]. Lancet. 1:1159–1160.[Medline] 

Other studies on GH & DS:
Arnell H, Gustaffson J, Ivarsson SA, Anneren G. (1996) Growth and pubertal development
in Down’s syndrome
. Acta Paediatr. 65:1102-6.
Allen DB, Frasier SD, Foley TP Jr, Pescovitz OH (1993); Growth hormone for children with
Down’s syndrome
(editorial). J of Pediatrics, 123:742-3.
Anneren G, Gustafsson J, Sara VR, Tuvemo T. (1993); Normalised growth velocity in
children with Down’s syndrome during growth hormone therapy
. J of Intell Disability Res
37(4): 381-7.
Torrado C, Bastion W, Wisniewski KE, Castells S (1991). Treatment of children with
Down’s syndrome and growth retardation with recombinant human growth hormone
Pediatr 119 (3):478-83 

Anneren G, Tuvemo T, Carlson-Skwirut C, Lonnerhom T et al. (1999) Growth hormone
treatment in young children with Down’s syndrome: effects on growth and psychomotor
Arch Dis Child, 80:334-338.

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