Jacob, a child with Down Syndrome, enjoying a family holiday and browsing in shops, like any other 5 year old child wouldJacob looking at books and watching TV at age 6 years - Down Syndrome doesn't stop normal development, but social attitudes do. - Jacob, a baby with Down Syndrome - Jacob at one year of age

Growth Hormones are a growth stimulant for kids and younger teenagers with Down Syndrome

We looked at using growth hormones with Jacob, a child with Down Syndrome, but decided the disadvantages outweighed the good.

The use of growth hormones as a growth stimulant in kids and younger teenagers with Down Syndrome has been going on for some decades. You start kids with Down Syndrome on growth hormones before they are eight years old. You then continue on with the daily growth hormone injections until they are around 16 years old. If the cost is not covered by someone else, the cost of treating your kid with Down Syndrome with the growth hormones runs about $1000 Australian, or $700 US, per month. With the use of growth hormones, you can expect your kid with Down Syndrome to grow about an extra 4 centimetres, around 2 inches, over that eight year period.

DOWN SYNDROME, GROWTH HORMONES AND RISKS / CONTRAINDICATIONS

Growth hormones / stimulants, however, appear contraindicated in those with Down Syndrome. The Australian government has ruled that growth hormones are potentially dangerous for those with Down Syndrome and has refused to support the use of growth hormones in general for those with Down Syndrome.

kids with Down Syndrome generally have normal levels of growth hormones, so when we give them the daily injections, for the vast majority, we are actually overdosing them with the growth hormone. The stunted height of a Down Syndrome individual is normally not related to their growth hormone level.

By overdosing kids with Down Syndrome with growth hormones, all sorts of nasty health side effects can happen, the most notable being an increased risk of cancer. Cancers of all sorts.

For examples, the risk of leukemia, which kids with Down Syndrome have an increased risk of anyway, is thought to be further increased. Even 20 or 30 years after the their last growth hormone injection, kids given growth hormones – who are now in their thirties and fourties, are coming down with an increased incidence of bowel cancer.

Other risks with growth hormone usage include:

Benign Intracranial Hypertension – Pressure inside the brain increases causing headache, loss of vision and nausea, but the blood pressure quickly reverts to normal in the brain when the growth hormone therapy is stopped.

Scoliosis – curvature of the spine – can become worse if the condition pre-exists. [ From what I can gather, it appears that any skeletal problem may be at risk of worsening should growth hormones be introduced – but this bit is based on my limited knowledge. ]

Another condition, called Slipped Capital Femoral Epiphysis, which is where the growing part of the thigh bone slips out of alignment, can occur in kids having a growth spurt ro who are growing quickly.

Diabetes type two – if the kid is already inclined to this condition for what ever reason, the use of growth hormones may promote it’s development.

WHAT DO GROWTH HORMONES DO FOR kids WITH DOWN SYNDROME?

Growth hormones appear to increase the eventual height of kids with Down Syndrome.

Growth hormones DO NOT increase the head circumference of those with Down Syndrome – which was once thought to be the case.

Growth hormones DO NOT increase cognitive abilities in those with Down Syndrome.

Growth hormones DO NOT improve gross motor development of kids with Down Syndrome.

If growth hormone treatment is stopped before full growth has occured, growth rate declines.

The information on Down Syndrome on this web page is based on a consultation with a paediatric endocrinologist (growth specialist), also on several articles: Mosby, 1993, Anneren et al., 1999, Kodish et al., 1996, APEG council, 2003.

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